Losing A Best Friend

photoThe beginning of 2010 has been an emotional one, especially with the loss of one of my closest and dearest friends, Jana. Jana Kelly Sheets passed away on January 6th 2010 at the young age of 35. Jana and I had met three years ago at the Center for Living (CFL) after my second lung transplant at Duke. She was the first person to come to me and invite me into the “group”, at the time there were four other girls’ pre-and-post transplant at the rehabilitation center all around the same age. I noticed that Jana was still on oxygen but I knew she had already had her transplant. Was her surgery unsuccessful? Was she stuck to this breathing machine for the rest of her life? Jayna (as she often liked to change the spelling of her name so people would say it correctly) suffered from a rare orphan disease called Lymphangiomatosis (LYMPH), in lemans terms, a lymphatic disease that affects multiple organs and tissues of the body, including and not limited to the lungs, bones, heart, stomach, connective tissue, and bones. Non-cancerous tumors grow in the lymphatic system and lymph fluid can build in the abdominal cavity, causing pain and difficulty breathing. Diagnosis is often difficult and can be confused with many other diseases. There are very few cases reported in the U.S. Jana was the first as far as medical records show to have a lung transplant that added an additional 5+ years to her life.

Jana was a very devoted wife, step-mother, daughter, sister, and friend. She dedicated her time to the LGDA Alliance, her family, her own health, and the joy of helping others. She loved her two cats dearly (Techno & Roxy), enjoyed cooking and reading, and treasured each day she spent happy, healthy and alive. I will always remember her joyful smile, her radiant glow, and the calming presence about her. She was never afraid or shy about sharing her disease, but eager to tell people of the new information, research, and outcomes. We spent so many memorable times together, but the best was the unplanned days where we laid in bed talking of fears, husbands, pet peeves, and gossiping about the hottest doctors. Kristine was also another of the “three musketeers.” The three of us loved to dine out, especially sushi (not raw of course!!) and Thai food, and enjoy the company and laughter of each other. We often laughed at how organized Jana was, but she was actually the one to plan her own “Celebration of Life.” She focused on details, numbers, and spelling. She had an eye for editing, and a knack for personal and media communication. Despite the odds against her Jana lived a full and extensive life. She lived in several states, held many respectable professions, made friends wherever she went, promoted awareness of LYMPH and organ transplant, and traveled often to her favorite vacation spot, Brant Lake in New York. This is one place she has asked her husband and family to spread her ashes in the coming months.

I would just like to commend her husband, Eric. He was her biggest support and managed her care more then anyone will ever know. Eric is a patient, gentle, and quiet man who wholeheartedly gave his life to Jana. I wish him all the best in his feature endeavors. To her parents: Suzanne and Jack, Congratulations! You two have raised such a wonderful and compassionate daughter. I am so lucky to have known her for the short time that I did. To Gavin: you are so lucky to have had such a caring step-mother. She loved you as her own and hopes for the best in everything you do.

And to Jana…
You will be missed! You have shed your positive spirit on so many people here on Earth. Each day we think of you, hoping there is a heaven and you can help guide us throughout the rest of this journey we call “Life.” I love you always and forever.

Lymphangiomatosis in the in the News

News Article about Jana dates August 20th, 2009.

Jana Kelly Sheets:

Arrangements have been made for the Celebration of Life for Jana Sheets. Please join her family and friends on Saturday January 16th a 2:00pm in The Duke Gardens Clubhouse in Durham, North Carolina to honor the life and legacy of Jana. She had requested no memorial services but a gathering of friends and loved ones to reflect on her life, experiences, memories, and accomplishments. Please dress casual and no black, but colors that shine the light of her spirit.

DSC02113In lieu of flowers please donate to the LGD Alliance at www.lgdalliance.org. This Foundation, Lymphangiomatosis and Gorham’s Disease, was founded by Jana and her father, Jack Kelly to gather research and clinical trials for awareness to medical personnel and to help other patients cope with this and other orphan diseases.

An article Featuring Jana posted January 9th, 2010.

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Looking For Volunteers

Dear Friends,

LTF LOGO PDFYou can make a difference in the lives of lung transplant recipients by volunteering with The Lung Transplant Foundation (LTF) in their inaugural Walk fundraiser. Founded in 2007 by a group of Duke Lung Transplant patients, families and medical staff, the LTF is dedicated to extending the lives of patients by raising medical research funds. Right now, the average life expectancy of a lung transplant recipient is 6.5 years. By far the greatest challenge patients’ face is managing chronic rejection, an irreversible and untreatable life limiting condition.

The Lung Transplant Foundation wants to fill the research funding gap by hosting its first, hope to be annual, fundraiser in the lovely Sarah P. Duke Gardens in September 2010. We’re looking for energetic people, like you, to get involved in the organizing and planning of the Walk.

We invite you to join us for pizza and an informational gathering session on Monday, February 8, 6:00pm at Station Nine Apartments in Durham (2211 Hillsborough Road). If you are interested in helping but don’t know what you can contribute, come to this meeting. We need you and your friends there, and I guarantee you’ll feel good about yourself for finding a way to contribute!

Hope to see you Monday, February 8 at 6:00pm at Station Nine. Please RSVP by replying to this email with the number of people attending.

Best,

Amber Wesemann
Fundraising Chair
The Lung Transplant Foundation

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CF Great Strides Walk 2010

3286_607341530599_5800058_36043234_5073786_nHello Team Angels for Amber!

It’s already here, the annual Great Strides Walk for Cystic Fibrosis. The event will be held again on Duke East Campus at 9am on Saturday April 17, 2010.

I am inviting you to once again join our team. Last year our group raised over $11,500 for the CFF. We came in second place for top donations for the Durham walk site, Congratualtions! It was all possible by each participants hard work.

This year the Durham site is hoping to raise 75K. We were short that amunt by $3,000 last year. Let’s see if we can’t beat that goal this year!

After walkers sign up soon, I hope to have a meeting in early Febuary to hand out donation packets, discuss on-line donations, plan both the bake and hot dog sale, and motivate the team! Food and drinks will be provided.

It’s so easy to sign up – just visit my GREAT STRIDES Home page http://www.cff.org/Great_Strides/AmberWesemann5432, click on “Join My Walk Team!”. Then follow the step-by-step instructions on how to register and begin your fundraising campaign.

The Web site also has lots of useful, easy-to-use features to help your fundraising efforts, including fundraising tips, tools to monitor your progress, and easy ways to invite people to make online donations to support your goal! Be sure to explore www.cff.org/GREAT_STRIDES today to learn more and start fundraising! As your team leader, I’m also available to assist you in your fundraising. Please don’t hesitate to contact me with questions.

Joining my GREAT STRIDES team is such a simple and effective way for you to show your support for this important cause. Together, we can make a difference in the lives of those with CF! Once again, thank you for supporting the mission of the CF Foundation, and welcome to my team!

Sincerely, Amber

Join My Team
Visit CFF website

If you encounter a problem with a link, please visit my GREAT STRIDES Home Page at http://www.cff.org/Great_Strides/AmberWesemann5432! NOTE: If link looks broken, cut and paste ENTIRE link into address bar. If you are presented with a “Find A Walker” page, enter my first and last name and click on “Find Walker.” Then click “View Walker” by my name in the results list to go to “My GREAT STRIDES Home Page.”

Thank you,
Amber Wesemann

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Holiday Happenings

It has been a few weeks since my last blog, so thought I would share with you the happenings of the holidays. It started on our (Leah, Travis, Rod, myself, and Hank, the 145lb Great Dane) drive to Boston from NC. We left Durham around 5pm, just after the snow began to fall. The usual four hour drive to DC took us 16+ hours. The snow fell so heavy that people just pulled off the freeway and abandon their cars and SUVs. After literally no movement for three hours due to a jack-knifed tractor trailer we continued our journey north. Around 9am we hit Jersey where the snow began to lighten up. Just past Philadelphia we were ahead of the storm. We finally rolled into my mom’s house at 4pm, the following day, exactly 23 hours from when we left. The trip was so long, but I must admit I didn’t drive any and probably slept at least 60% of the time. Thanks Rod and Leah for getting us home safe!

Christmas Eve was a quite time here around the Berry household. My mom and I met a few dear friends for dinner. Of course we missed services again this year. Christmas Day I cooked a full dinner for 12ppl and we opened gifts and shared in the joy of excitement and surprise. Later that evening my sister, her fiancée, and I headed to my father’s for another present exchange and a late night snack.

Then came my 30th birthday, December 27th, I can’t even believe it! The big 3-0!! The doctors told my parents I probably would never make it to my teens and now I am three decades old. My Aunt Susie surprised me with a visit too.

Travis is headed to the Rose Bowl on New Years Day in California. He has been talking about this since Oregon beat Oregon State in the Civil War around Thanksgiving. Go Ducks!

The weather here in Boston is freezing, and I mean like 13 degrees with a -5 wind chill factor. Since my lung transplants I am very sensitive to the cold, plus I think I climatized to the South real quickly. I am having a gynecological procedure at Mass General tomorrow morning. Hope for a quick recovery and fly home to NC in mid-January. I really miss the kids I sit for, both Elle and Griffin. Once I get home I will have another bronchoscopy, PFTs, and x-ray to see if the high dose steroids I took in early December worked to cure the rejection. If not I will be admitted to Duke for a few days for a heavy duty anti-rejection medication.

Happy Birthday December Babies: Bethany Kim, James, Marla, Jan, Sarah, Kellie, Dottie, Ashley, and Lindsey!

I am wishing everyone a happy, peaceful, and healthy New Year!

~Inhale. Exhale. Breathe.~

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Rejection Yet Again

This past Tuesday I received a phone call from my lung transplant coordinator, Tracie. She was calling to inform me of my previous week’s bronchoscopy results. They weren’t the words I was expecting to hear, “REJECTION again.” As the pathologists’ reports indicate, it is A1 acute rejection. This summer it was A2, a more serious stage of rejection. Tracie and Dr. Zaas have decided to order me three days of solumederol (by IV) and then a taper down dose of prednisone. I should be ending by late next week. My sister, her fiancée Rod, and my boyfriend Travis are driving up to New England on the 18th where we will stay through the holidays and my 30th birthday! I have a gynological surgery scheduled for January 4th at Mass General Hospital. I hope to be back to North Carolina by the middle of January. I have another bronch scheduled for the 21st. This will indicate if further measures need to be taken to treat the rejection. Dr. Zaas told me yesterday at clinic that Campath, (drug I received during my second transplant) will need to be used again. The down side to this “big gun” medication that it will completely wipe out my immune system again, so I would be on IV Gancyclovir for at least six months. I would remain on the Procrit and Neupogen shots weekly for another year and be highly susceptible to colds, bacteria, and viruses. So let’s cross our fingers that this first round of steroids works!

~Inhale.~Exhale.~Breathe.~

Please continue your prayers for my friend Jana. Also I am remembering my friend Deb Hamlin who passed away this week from transplant complications, my sympathies to her family. To the family of Joey Velucci, keep strong and I am thinking of you all.

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Four Years Out

Today is the four year anniversary of my first lung transplant at Mass General Hospital. This day back in 2005 was a memorable, yet terrifying, exciting, sad, scary, and a very joyous occasion. I remember the night before like it was yesterday….

That weekend I had been in Maine for Thanksgiving with the Marsh Family. Mary Marsh had asked me to pull the wish bone from the turkey and make a wish. I did…… that following Monday night while watching CSI, Miami at 10pm the phone rang. I had a notion, an uneasy and nervous feeling in my stomach. The phone was for me, it was the lung transplant surgeon Dr. John Wain, asking if I was “ready?” Was I? I didn’t know, the time had finally come, 4 ½ years on the list. He said he was on his way to look at the organs to see if they are viable. He said he would call back soon. I freaked! I called my mom, dad, sister, and best friend Mackenzie. They were all at my house within the hour. We waited, waited, and waited. Midnight, 2am, 4am, 5am, passed. Around 6:30am the phone rang again, “They are a go” said Dr. Wain, “be at MGH by noon.” At the point memories all mix together; I was emotional, scared, and optimistic. I do remember talking with several family members and friends, but none of the conversations. We drove to the Hospital in Mom’s car, not sure why the rest of weren’t thinking, we actually let her drive. It was a long and frightening ride. As soon as we were inside the large medical institution we were led to the SICU to a private positive pressure room. Surrounded by glass, the entire room was sterile, no pictures on the walls, just IV pumps, blood pressure machines, heart monitors, medicine cart, a fusty looking bed, and a small 13” TV strapped to the ceiling. After the lab drew many tubes of blood, my sats were taken and anesthesia came up and explained the risks of lung transplantation, to which I signed off as okay on the form, I was headed down to the operating room. My family was allowed to come as far as the induction room but they were required to be fully covered in alien looking scrubs. Tears were shed, smiles were shared, and I was ready to go! “See you on the other side,” I said as they rolled me away into the OR. This was it, I was either going to live or die.

The surgery took about nine hours. Constant updates were given to my family and clan of friends who had gathered in the waiting room. Supposedly they took over the place, sharing snacks and games, sleeping, laughing, and crying. It was late into the night before the surgery was complete. Most people went home but my immediate family stayed. Early in the morning they were finally allowed t see me in the SICU behind the closed glass. My father said he noticed the color back in my cheeks right away. I lay there still, motionless as I was in an induced coma to help heal the large clam shell incision across my chest. Days passed, the 1st of December came and went. The doctors hoped to extabate me within a week of the operation but I ended up getting pneumonia in my new lungs so I wasn’t off the ventilator until December 16th. I do remember bits of pieces when I was under. I not quite sure what was real or what was imaginary but I did see family and friends and people from the past. On Dec 14th the doctors finally allowed my family to come into the glass room and talk with me and hold my hand. They had to be fully gowned, masked, and gloved though. The next few days were a blur. I had ICU psychosis, wasn’t allowed to eat, in pain, and felt depressed. It seems as though time was standing still. Finally on the 21st day I was transferred to Blake 6, the transplant step-down unit. My first thought was to take a shower. My mom placed a chair in the large hospital room shower and I just sat in there for 45min, letting the warm satisfying rain drops just splash off of me. This was the best feeling I had had since before the transplant. After, I read several of my well wishes from all the many people who wrote during the past 21-day ordeal. My eyes filled with tears as strangers were saying prayers for me all around the world. Those next few days flew by, I was a star patient. I was walking on my own now, eating regular food, and learning quickly my new routines for daily medications. I was now prescribed at least 15 different medications, totaling over 35 pills a day. On Christmas Eve my Doctor came by my room and gave me the most wonderful news yet, I was being discharged tomorrow, Christmas Day! What a perfect gift!

Now four years have passed. I am grateful to all my family and friends for being so supportive, My Aunt Susie, my Mom, Leah, and Fred. But most importantly I am thankful to my donor, who gave me life, breath, and new lungs.

~Inhale.~Exhale.Breathe.~

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Happy Thanksgiving

Can you believe it? Where has two thousand nine gone? Some of us are happy to see the year pass by, as others’ just lost track of time and are shocked Santa is already at the mall. Myself, I won’t mind to see this year end but will treasure the memories, weddings, babies, and the people we lost. With the rejection of my lung transplant being at the top of my “not-so-fun times of 2009, I did get to share in the journey of love and marriage of several close friends, and the engagment of my little sis. As for my own love, Travis, we are happy and pulling strong, maybe someday in the future we will be headed down that same path.

I am hoping for peace and good health to all this holiday season. Please keep my friend Jana in your thoughts as she countinues to fight everyday to breathe. Also please pray for Jill Sager, Felicia, Carmen, and Bobby Dixon. I am thankful for the wonderful family I have been blessed with and the caring friends that surround me. Have a happy and safe Turkey Day!

~Inhale.~Exhale.~Breathe.~

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In Memory of…

There are several people that I have met throughout this journey of Transplantation that have fought the battle, the disease, with all of their strength. Unfortunately their bodies were exhausted and were ready to rest. Their passing was devastating to us all, but their souls remain alive and their laughter will remain in our hearts forever!

~Sarah Giles
~Haylie Birkhead
~Colby Edwards
~Hal Thompson
~Peggy Lemon
~Dawn Sarver

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So Much To Tell

I feel like I have so much to tell you all that has happened over the past few years since I have been down here in North Carolina. Something exciting to mention: I started back to school. In October I enrolled in The Personal Training Institute (NPTI) in Raleigh. My good friend Alan is the owner and instructor of the school. The program is for one year, two nights a week at five hours each class. The classes consist of three hours of education, including, anatomy & physiology, bio-mechanics, nutrition, fitness programing, business, etc, and the last two hours are the practical, out on the gym floor. There are only five classmates so there is a lot of one-on-one training. I am enjoying the class and at the same time getting an excellent work out! After completion of the course I am interested in finding a rehabilitation center to use my techniques and learning experiences to help others’, maybe transplant or CF patients, to continue on a exercise regimen after their Rx for rehab is over. Working as a motivator to keep up with clients fitness (strength, endurance, flexibility, cardio-pulmonary, and body composition) to maintain their health.

You may have noticed several pictures of myself with children, those are the kids I nanny for. I watch two children from seperate families during the week. Griffin, age 3 years, is an energetic and creative little boy who loves to play soccer and go to the museum to see the dinosaur exhibit. Elle is a happy bubbly 13 month baby. I have been with her since she was two months. Our current activities include going to the park, rhyme time, and trying out new foods at meal time. So far there isn’t much she wont eat, a girl after my own heart! Both families have been so great in allowing me flexibility for medical issues and appointments.

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You Can Now Register

You can now register yourself. Just click on the “register” button under the login area on the sidebar and you will be linked to a new page to fill in your username and password. It will then send you a confirmation email and you are then on your way. This will allow you to make comments on any of my blog posts. If you don’t want to register, and just want to post a quick comment, you can do so on my guestbook page.

Thank you to all who wrote comments and checked out my new webpage!

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My First Blog

Hi Everyone! I am so excited to write my first blog and allow you all into my daily life. I know it has been a few years since a post has been written on this website but now with the new layout (thank you so much to Kevin Smith! You are the best!!) I plan to write at least once week. A couple of things I would like to tell you first on how to navigate through this website. If you would like to register as a member, you need to do this if you would like to comment, please send me an email with your name, email, and password. A confirmation email will be sent back to you. My transplant medical posts are divided between my first and second experience. Currently I have a donate button for the Cystic Fibrosis Foundation, but soon will be adding PayPal to donate to The Lung Transplant Foundation also. The picture at the bottom of the homepage is attached to Flickr. Click on the photo and it will take you to my photostream, pictures of me, my surgery, and my friends.

Now, on my health, it is good. Over the summer I had a bout of rejection and was given a strong medication, AKA Rat-G. As of September I needed to have three clean bronchoscopies, so far I have had one, all clear! I did have my second last week, but not enough tissue sample was biopsied so I have to have yet another. However, if it is clean I don’t have the procedure again until next year! Cross your fingers!

Today, Kasha (Travis’ sister and my Oregon girl) was in town. We were quite lazy today, me sleeping off and on until 3pm and Trav and Kasha battling each other on an Xbox game. Now we are waiting for the Oregon football game to start at 10pm, Go Ducks!

~Inhale. Exhale. Breathe.~

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Amber’s Back At Home

Hi Everyone!
Amber got out of the hospital on Sunday and is resting quietly at home. As Leah said in her update, they were able to do the surgery laparoscopically, so she will recover faster. She is still very sore and trying to deal with new eating habits and a “new” stomach (at least it works differently now). The purpose of the surgery was to tighten up the top part of her stomach (the sphincter at the bottom of the esophagus/top of the stomach) to prevent reflux up and possibly aspirating into her new lungs. This is to protect her from aspiration causing rejection. Her surgeon also did a pyeloroplasty, which is opening up the pyeloric sphincter at the bottom of the stomach where it empties into the duodenum, thereby allowing food to pass more readily out of the stomach. This is mostly a gravity feed mechanism. Amber was having quite a bit of difficulty with her stomach being bloated, and subsequent nausea alot of the time. This was due to the interuption of the Vagus Nerve that works the stomach as a muscle that munches food and spits it out. Hers wasn’t doing that….it was just sort of quivering there with no muscle power to move anything along. The nerve “damage” was due to the thoracotomy she had to place her new lungs. As with all nerve damage, it takes time to see how much function returns. Hopefully with these procedures being done, along with the repair of a hiatal hernia found, her stomach will respond well, and she will return to the chow hound she is by nature. This liquid diet has been rough on her…it’s been a longggggg time. I don’t think she will ever eat jello or pudding again. If anyone has any good ideas for a full liquid diet recipe, please send them! Amber says HI to everyone and you will hear from her soon…she’s just laying low for now.
Thanks for tuning in!!! Love to you all. Laurie
P.S. I’m back to Boston on Thurs.

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Successful Surgery

Hi Everyone,

Before Amber went into surgery yesterday, she asked that I write an update as soon as we got word from the surgeon that the surgery was done with and successful, but true to my nature…I forgot. I’m sure you have all been checking and eager to know how it went, so I apologize for that. Amber came out of a successful surgery yesterday afternoon. The doctor was very pleased with how it went, repairing a hiatal hernia and performing both of the planned surgeries without any problems. Her stomach was completely empty (I guess thats what 16 days of not eating will do to you) so they were able to complete the surgery using the less invasive lapriscopic method. She slept in the recovery room for about three hours before she was transferred to the step down floor where she is now, trying to rest as comfortably as possible, despite incessant itching from the epidural. Right now, the thing that is supposed to be giving her relief is causing her the most discomfort, so Mom has been working with the pain team, doctors and nurses to figure out what adjustments can be made to make Amber more comfortable and able to rest.

The only bad news that Amber woke up to yesterday, was that she wouldn’t be able to eat or drink anything, not even ice chips, until Saturday morning. We are trying our best not to eat, drink, or even talk about it in front of her, but as I’m sure you all know, food often occupies our thoughts and conversations. A swallowing study on Saturday morning will determine whether or not Amber can begin drinking clear liquids, which she will do for a week before she is able to start a full liquid diet. At this point, it looks like it will be late July/early August before she eats her first Breugger’s bagel sandwich. Perfect timing because we are scheduled for an early August trip to Ohio for Grimes fest 07′ where, as always, our days will be planned around preparing and eating extravagant, hearty meals…perfect to fill her emtpy belly with!

Thanks to everyone for checking in, and again I apologize for not writing sooner. We’ll keep you posted as things progress.

-Leah

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Finally, Another Update

I am writing this update from the car headed to Wilmington for a spontaneous overnight for the mid-week holiday with Leah and Rod. The North Carolina beaches have been calling our names for weeks now; finally the three of us have off for a few days to relax on the hot sand under the beaming sun. Wilmington is full of great boutiques, shops, and restaurants. Unfortunately I won’t be able to enjoy the gourmet dining the city has to offer due to my strict liquid diet. I was scheduled to have the stomach surgery Monday, but it was postpone due to my blood work last Wednesday revealing a low white blood count of 0.8, which should be at least 3.0 for any surgical procedure. On Friday my WBC was re-drawn and the level was 2.9. Regrettably my surgeon had already canceled the operation because he didn’t think my blood count would be high enough by then. The operating room schedule was then full. The surgery is now planned for July 11th, and until then I am on a liquid diet to ensure that there is no food in my stomach to guarantee a laparoscopic procedure instead of an open incision.

I just returned from about a month of traveling. My first trip was a weekend to Maryland to visit friends’. Beth, my friend from college, organized a team, “Angels for Amber,” for the annual Cystic Fibrosis walk-a-thon. The team with twenty-seven members raised over $3000. Thank you! The following weekend Mackenzie and I drove up to Boston. I spent two weeks in Massachusetts enjoying the company of friend’s and family. I was able to dine, drink, and converse with all the people who supported me throughout the past few years. I stopped at Lynn Union (where Mom works) and met the dozens of nurses, doctors, and techs that followed my story. Laurie decided to make the long drive back to Carolina with me. We divided the trip up and stopped in Philly overnight to visit with my Aunt Cathy, Uncle Ron, and cousin Zoë. I arrived back in Durham after a 13-hour road trip, washed my laundry, and re-packed my suitcases to jump on a plane and head to Oregon for the next thirteen days. There in Eugene I surprised my childhood friend Sierra at her bachelorette party dressing in a full bunny costume pretending to be the hired stripper. When I revealed my face Sierra was in shock, she then started crying hysterically, and then began to curse me out saying she thought I was “sick” and not healthy enough to attend the wedding. To say the least it was a beautiful wedding, the venue in Lorane and attended by friends and their parents I have known my whole life. Susie had a potluck dinner at the farm, we traveled to the coast, ate foods indigenous to the area, spent time with the “Lorane Girls,” was tickled by my grandmother, attended the Saturday market, and enjoyed the peaceful sounds and sights of Windsor Farm.

Physically I am doing marvelous. I was a bit exhausted after all my travels but following many nights (and days) of sleep I have fully recovered. At last weeks clinic visit my numbers looked good. PFTs around 80% and labs were of at normal values (except WBC). My x-ray looked free of any lung problems but the doctor did notice my heart looked a bit enlarged. After an echocardiogram on Friday the results were negative of any fluid surrounding the heart or any reason to be alarmed. I will have lab values drawn one last time before surgery this coming Friday and as long as my WBC comes back over 3.0 all should be set for July 11th, cross your fingers!!

Many more travels are planned for the next few weeks before summers end. In August there will be another “Grimes Fest” (Mom’s side of the family) in Ohio at the new lake house. Then I will be traveling back to Boston, this time to visit friends in Nantucket, Martha’s Vineyard, New Hampshire, and Maine and to attend our good friend Christina’s wedding. Over Labor Day weekend several friends from Oregon and Alaska will be visiting. As fall approaches I plan to buckle down and look for a job. As of now I have a few options in the works, one of which to work in the leasing office as a sales associate here in our apartment complex. For now I am happy traveling, relaxing, hitting the gym, and enjoying the company of my closest friends and loved ones. Thank you all for supporting me through my hardships and triumphs, I will follow up shortly. Sending love from my home to yours. ~Amber

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Back To Boston

It’s been a long seven months, five of them here in North Carolina, but finally Amber is healthy and happy. She still has some obstacles to overcome and her health will always be an issue, but she now has new lungs that work perfectly so that she can live, and have a good foundation on which to build a healthier life. There were times when we doubted that she would still be with us now, but many things were in her favor and she is a strong fighter , not giving up when many of us might.
We are so fortunate to have such excellent health care here at Duke and to have this opportunity for a second transplant! Amber, as well as all of us, realizes just how lucky she is. We have also been blessed with so many people who have made this journey easier…not only in this close call, but throughout the years of Amber’s battle. Thank you so very much for all of your calls, emails, cards, gifts, food, prayers, hugs and kisses. Thank you for your words of comfort and encouragement, and for making us laugh. Thank you for all of your fund raising efforts (thank God we did that!), and unwavering support. Prayers were said from coast to coast and even abroad……Thank you!!!
Now it’s time for me to return to Boston. Amber is flying solo with her sister in close range. I still have my job waiting for me, thanks to some very generous and caring people. I also have my “new” home on Vine St. which misses me, and I them. I had just moved in there when Amber became so sick, and life wasn’t normal anymore.
I want to thank Scott Gonzales for making this forum possible via this website he created and maintains. He also started the A.W. Transplant Fund a few years ago. Thanks to Leah, the best sister who has stayed by Amber’s side through thick and very thin, and to my dear sister Susie who has stayed by my side, and I don’t know what I would have done without her. She has been my pillar of strength, and I love her very much. My brother David and sister Terri for bringing us here and finding us a place to live and all their love and support. Thanks to my other brother Eddie and sister Kat for being here for us , and my Dad for always being there for me, no matter what. To my great friends Lisa, Joannie and Flo who came to visit us and always give a shoulder, and a smile..I love you! For my friends at work who are always supportive and caring..thank you all!!!! To all our friends in Oregon, especially the fabulous five who are Amber’s lifelines……what a special blessing of friendship!! Thanks to Fred and Rick for that famous trip together to bring us our stuff from MA…to Fred for being a good father and to Rick for keeping me sane. There are so many of you to thank…..just know you are in my heart.
I will write again from Boston to keep you posted.
Love to all! Laurie

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Nine Weeks Out

Once again a glowing report from the doctors last week. My PFT’s are up still increasing each visit. I am back down to only one IV medicine a day and decreasing the amount of pills first perscribed. My appetite is growing, still trying to reach that 100lb mark. Even all the milkshakes and the fast food I have been consuming haven’t been helping. At rehab I know walk two miles and ride the stationary bike for about six miles four days a week. I am feeling much stronger, even got a little bicep muscle!!

I have had a few side complications. I went to the podiatrist on Thursday for in-grown toenails on each foot. The Doc cauterized a small section of each toenail, this permanently removes the nail to prevent reoccurance. I have to soak and bandage them daily for two weeks. Follow up appointment this Thursday. I am also completing the monometry study on Friday. A micro chip will be placed in my esophagus by endoscopy. The pH will be read through a box that I have to wear on my hip for 24hrs. I have an appointment on May 1st with the surgeon to discuss a date and details of the stomach wrap surgrey.

Everything is going so well, I just never expected to be this happy or physically active again. It is a miracle! I have made several friends and am finally regaining a social life, something I have truly missed the past six months.

Laurie is preparing to move home the weekend of April 27th, at the same time Rod (Leah’s boyfriend) is moving down to Durham. It seems that everyone is prepared for the next phase of life– this past 1/2 year was quite unexpeted and took a toll on everyone. I want to thank the two people who mean the most to me, for sticking by myside even when I wasn’t so plesasnt to deal with. I would give them the world if I could, but for now I hope they realize how much I appreciate everything they have done for me– I will never forget.

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Bright and Sunny Days

Alright ya’ll here is a new update. I went to have my monometry and pH study yesterday to see if I needed the fundoplasty (stomach wrap) that they often perform on lung transplant patients to prevent aspiration in to the newly transplanted organs and cause rejection. The nurse was unsuccessful to place the tiny tube down my nose and into my stomach so I now have to have it placed by endoscopy on April 20th. This procedure is a little different then the original study, it is called a “bravo.” In this operation they place a microhip on the bottom of the esophagaus and I wear a box for two days so the pH levels can be measured, no tubes included! The doctor confirmed yesterday that I will need this procedure either way and this is just to find out how severe the reflux actually is. I hear the procedure is quite painful– worse then the transplant itself. I can only drink just liquids for two weeks.

I also had clinic yesterday. My PFTs are up to 74%, again much higher then the Docs expected at this point. My blood gases were normal, perfect CO2 levels, oxygen saturation was 100%, x-ray was perfect, and blood sugars are under control. Dr. Palmer did discover a small hernia on my right side which can be fixed the same time as the stomach wrap.

Leah and I are making friends easily and discovering new shopping spots, resturants, and walking areas each day. We truly enjoy the weather (been in the 80’s) and are looking forward to more visitors soon. My friend Kim from Maine came last weekend, and next weekend Rod and my cousin Cathy Zoe will be flying in for Easter. Laurie has been traveling herself. She was in Boston this past week, came home last night and now is off to Lexington, KY where my Aunt Susie is being inducted to the wheelchair basketball hall of fame. Fred is still busy teaching English at Salem State College.

I want to end with a quote from another young tranplant patient who passed away on Tuesday. “Life is not about the breaths you take, but the moments that take your breath away.” – Onjelique Stevens, 1982-2007.

All my love, Amber Zoe

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Full Of Life

I am finally getting a chance to write my first post-transplant (tx) update. It has been almost six weeks since my surgery and I am doing excellent! I have clinic once a week, and pulmonary rehab the other four days. Clinic consists of blood draws, PFTs, blood gas, vitals, and an x-ray. After all that is completed I then see one of the six pulmonologists. I like them all! I have only seen three post-tx but saw them all in the hospital pre-tx. I love pulmonary rehab. It is four hours a day but the time seems to fly by. There is a lot of time for socialization and it seems they are having a party every other day for something or other. I have met several friends my age and older (up to 82 yrs old), some with CF, others with a different diagnosis, but we all seem to have common stories and goals. Rehab includes weights/machines, an hour floor class (weights, streching, yoga), followed by 20 min walk on the track and 20 min stationary bike ride. At the end of the day there is a lecture on various transplant topics.

I had my first clinic bronchoscopy yesterday. Dr. Zass said the new lungs looked excellent, no evidence of rejection and they are healing on schedule. I am only on one IV medication, down from three, and two inhaled meds. Still taking about the same amount of pills, approximatley 25 a day and I have to check my blood sugar 4x/day due to diabetes. On Monday I have an appointment to have a monometry and pH study. This is to find the degree of my acid reflux. If I have any reflux I have to get a stomach wrap (fundoplasty). This procedure is where they wrap the sphincter muscle around the esophogaus to prevent reflux and aspiration into the lungs (this can lead to rejection). I have heard this operation is more painful then the transplant itself. I can’t eat for two weeks:((

I got permission to drive and to travel home to Boston at the end of May. I plan to relax through the summer before looking for a job or deciding on a career. Leah and Mom are both here with me now, but it looks as if Laurie is moving back to Boston May 1st to go back to her job, which has given her the last six months off to take care of me (Thank you AAM!). Leah and I will remain in North Carolina until at least next spring.

I recieved so many cards and pictures from the last five months and the seventy days of hospitalization, I decided to hang them all on my wall by ribbon with those cute tiny clothes pins. Now I can look at all your messages and well wishes everyday. Thank you! I also have to thank the most important people in my life who dedicated all their time, support, and love: Mom, Leah, Dad, Susie, Mackenzie, and all my family and friends who visited here and those who where there in spirit even though they couldn’t be here physically.

I love you all. I think of you daily and pray for you often.

Love, Amber Zoe

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Amber Is Doing Great!

Hi Everyone!
After 70 days in the hospital, 21 of them post-transplant, Amber was finally discharged last Sturday. Sorry for the gap in updates, but things were hectic with medication and equipment deliveries, new schedueling, and sheer fatigue. She was in a week longer than normal because her right lung would not stay inflated off of sucion to the chest tube, but time took care of that, along with Dr. Davis yanking the suction tubing off of the canister and saying “well, there ya go!”
It is so nice not to be at the hospital everyday…just home with the three of us (except we can’t stand Susie being gone..she was such a pillar of strength for us all!) We have had a few visitors lately; my dear friend Joannie, Rick, and Leah’s friend Katie. Amber has been taking alot of long hot showers, catching up on sleep, eating homecooked meals and doing all the meds and measurements she’s supposed to (daily weights, blood pressure, blood sugars, spirometry, etc.). She started her pulmonary rehab at the Duke Center for Living yesterday and did great! She blew through her workout without a hitch. Her breathing is perfect and her endurance is only limited by her muscle weakness from inactivity for so long. She will be there 5 days a week for 6 weeks or so, except on the days she goes to clinic, which will be once a week for now. Today was her first clinic day which was a long one. Blood work, chest x-ray, pulmonary function tests, ABGs, then lunch followed by waiting for hours to see Dr. Snyder, one of six transplant pulmonologists on the team. She said she couldn’t find anything wrong with Amber, and she looked wonderful. Her PFTs were 60 today!(FEV1) A far cry from the dismal 11% not so long ago. That’s 1.97 liters compared to .4 liters! She also got all of her staples and stitches out, and consequently feels less restrictive through her mid section.
I realized that Amber has quickly made friends here, chatting with people in the waiting room and people stopping her in the halls and cafeteria. They ask each other about their experiences, meds, where they’re from, etc. Some are patients, others have just seen her around. People here are extremely friendly and outgoing, not nosey but genuinely interested in other people’s wellbeing. It’s a refreshing pace from Boston, although we all miss our friends there terribly.
Leah is leaving tomorrow to come home for 10 days for her job, to ski and see friends, and take a well deserved break. I am coming home for 6 days at the end of March. So one of us will always be with Amber, but she is getting stronger and less dependent everyday. I believe as days go by she will do better and better, pushing herslf at rehab and continuing to heal, and her pulmonary function will soar upwards to a remarkable new baseline that has us ALL breathing easier! We celebrate this gift of life and Amber’s second miracle, and have to shake our heads when we think of ‘MGH’ stating that all there was to offer Amber was “palliative care” (basically, hospice). Even when something seems hopeless, don’t ever give up!!
Thank you all soooooo much for taking the journey with us, for your support, encouragement, caring and love. It keeps us going and nurtures our souls, and it is cherished more than any of you know. Love, Laurie

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Guess What?

Amber was discharged from the hospital this morning and is on her way home right this minute! The news was an instantaneous relief of pressure and stress for us and although we still have a ways to go, and hurdles to jump, this is a huge step for Amber.

I will write more later, but I just wanted to share the good news with you all, as you have been so forthcoming in sharing your thoughts and well wishes with us!

xoxo,
Leah

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Slow And Steady Wins The Race

It’s March 1st, the sixty-eighth consecutive day that Amber has been in Duke Hospital. She is starting to feel the effects of long term hospitalization: anxiety, claustrophobia, and intense frustration. She is trying to stay positive but her emotions can sometimes get the best of her. Physically however, she is doing extremely well, considering that only three weeks ago she was cut open from one side to the other, had her breast bone broken and wired back together, and had both of her lungs taken out and replaced with anothers. Given the magnitude of this type of surgery, the small obstacles that we have faced are to be expected. The one issue that is keeping Amber from getting discharged is that her right lung is collapsing when suction from the chest tube is turned off, a common effect of lung transplantation, and a complication that always heals itself (sometimes more s l o w l y than others). Yesterday the suction was decreased and her lung remained inflated. This evening Dr. Davis pulled the suction entirely and tomorrow morning an xray will show us whether or not the pneumo thorax (lung collapse) has healed itself. If the lungs tell us that it’s time, then the chest tube and the two drainage tubes can finally be removed, which means…possible discharge in the next few days!!

The long road to recovery does not end with discharge however. Amber is still experiencing a lot of nausea from the numerous iv and oral medications she is recieving on a daily basis. Her blood sugars have been dropping lately so the diabetes team is working with her to find a safe balance, one that hopefully still includes gummy bears! Her midsection, around the incision and the chest tube, is causing her great discomfort, but because of all the hallucinations last week, she has stopped taking all pain medications. Hallucinations sound like a lot more fun to me, but hey, I’m not the patient!

Amber has asked me to tell you all that she is slowly reading the well wishes and finding strength and courage in each one. She truly appreciates the thoughts and kind words of friends and family and looks forward to the day that she can personally share her experience and express her gratitude.

xoxo,
Leah

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Susie’s Logging Off

Here we are, sitting again in Amber’s hospital room, the 9th room she’s occupied at Duke Medical Center. We’re entertaining ourselves tonight by watching the Oscars- (Ellen’s funny) and passing time until Amber can go home. We know it’s going to be soon. And it won’t be soon enough as today is the 63rd day out of the past 70 days that she’s been in the hospital. It’s hard to remember that Amber’s transplant was only 16 days ago- the long string of hospital days seem to run together. She gets “buggy” or claustrophoic at times and needs to make a dash around the hall or down to the garden for some sunshine and fresh air. Soon she’ll be able to go outside whenever she wants to. She said the first thing she wants to do when she gets home is take a shower, open her bedroom window and lay in her own bed

Amber is feeling better, but still having some very uncomfortable moments. She has 1 chest tube in and 2 drains, which need to be removed before she can be discharged. Her multitude of meds are still getting refined and her lung capacity continues to improve. All the signs look very good for Amber’s healing and she is perservering through these last long hospital days.

Tomorrow I’m logging off, boarding the plane for home and returning to Oregon. I am happy to be going home, but quite sad to leave my family in Durham. Our very strong connection has only deepened through this experience. While it’s hard to leave, I am feeling very positive about Amber’s future. She has come so far since October and gone through so much. The medical care she’s recieved at Duke has been outstanding and it’s a comfort to know she will be in their care for the next year.

Updates will continue as we want you all to stay informed and included in Amber’s progress. As I’ve stressed, your love and support has meant the world to Amber and to our family. Thank you for your expression of love, from the bottom of my heart.
Love to all, Susie

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A Couple Of Rough Days

Hi everyone. Amber has had a rough time these past days. She has not been feeling well because of an upset stomach, low energy, and being sore from the surgery. Due to high medication levels coupled with a lack of sleep and many days counting of being in a hospital environment, she has been experiencing what’s known as “hospital psychosis”. When she closes her eyes, she is in what she’s described as a “parallel universe”. What she sees and does and who she talks to are very real to her. We watched her for almost 2 days go between a very uncomfortable awakened state and a world all her own when her eyes were closed. She didn’t really sleep, but hovered on the horizon of being with us and being with her imagination. The doctors reassured us that once the narcotic levels went down and she was able to sleep, she would be fine. This helped us to appreciate the entertainment factor in watching Amber direct traffic (or was it an orchestra?), play puzzles, sew, do various activities with her hands, make interesting facial expressions and have conversations with her friends. She was quite busy. Finally, she started to get actual sleep and the hallucinations wore off.

Today, Amber is feeling better. She recieved 2 units of blood which is helping her fatigue level. She is resting well and still able to get up and walk with gusto. Her breathing is fine as her new lungs are doing their job well. Amber’s surgeon has reassured her and the family that she is doing well and that we should expect some bumps along the road. It’s not just a matter of replacing a worn out part. Many other factors come into play and each day a new “problem” or challenge emerges. They are managable, though, and we’re keeping our eyes on the big picture- making it through these rough patches, knowing that the good days are ahead.

Thank you all again for your prayers, your comments and your well wishes. I encourage you all to keep writing- it really helps.
Love, Susie

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No One Can Know

It’s been 11 days since the installation of Amber’s new breathing apparatus! Breathing is no longer a difficulty, but her body and psyche are still getting acquainted with this new set-up and is still healing from the trauma of such an invasive surgery. All the medical signs look good and each day another tube, line or medication is discontinued or removed. The prognosis is excellent and the doctors have said that she is out of the surgical woods. The waiting time is no longer for lungs, it’s for Amber to heal and feel better so she can be discharged from the hospital and begin her life “on the outside”. We know this will come soon and no one is more ready for that to happen than Amber.

On the day to day level, Amber is exhausted. She is having sleepless nights and difficulty getting any prolonged rest during the day. She is weary and drained. Her plumbing is still not quite worked out, although she is now free to eat and drink as she pleases. She is numb around the surgical area and sore. Even so, she is getting up each day and walking, doing a mile yesterday on the treadmill in her room! She looks good- she looks healthy. She looks tired of being a patient.

These months have certainly been stressful and challenging for the family. Laurie picked things up when they fell to the floor at MGH. She persisted and ultimately got Amber the medical attention she needed. She has been at the hospital non-stop and attending to each change and new phase of Amber’s recovery. Her medical knowledge and experience serves as an incredible asset, her discerning eye always questioning and correcting. Laurie’s competence is a huge reassurance and she is able to interpret how the procedures and medications are working for Amber. There’s no one better to be in your corner than Laurie.

Leah has been by her sister’s side at every turn. She’s incredibly and unquestioningly committed and supportive. She knows her sister inside and out, able to speak for her when Amber couldn’t talk, able to cheer her up when she needed it and able to, just be, when no words could be found. Her love and devotion is oceans deep.

Fred has been here regularly and when he was most needed. He’s demonstrated his devotion and his caring in most consistent ways. His presence is calming to Amber.

Throughout this amazing race, Amber has needed all the support she could get. None of us can ever know what it’s like to go through what she’s been through. To experience a double lung transplant, not once, but twice. To be close to dying, to have no hope, to have no energy, to gasp for breath that isn’t there. She has had to muster the stamina, the tenacity, the mental toughness, the faith, the hope, and the belief that things would work out. She has had to dredge up the physical strength to survive months of stressful existence. And she has chosen to believe that she will have another chance for her life, her choices, her destiny.

Belief and faith are powerful tools.
Love, Susie

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The Latest News

It’s been a couple of days without an update as things have been busy and a bit difficult. Laurie and Fred have been spending each moment at the hospital with Amber, Laurie sleeping overnight in Amber’s room on a chair. Leah is sick and not able to come into the hospital, and I am still sick and not around until Monday. Everyone is exhausted. Amber continues to be exhausted and is working on getting rested as well as getting up and walking and moving around as much as possible. She is walking with ease! Until last night she was still not able to eat or drink- now she is starting to eat small amounts and is feeling better.

The doctors are very happy with how things are healing and functioning with Amber’s lungs. She has a little bit of secretions, which is normal, and there are no bacteria growing. This is great news! Her O2 sats, blood gases and volumes are very good. She may be getting two of the chest tubes removed today, which would make things more comfortable for Amber. The epidural was removed which means that she is now experiencing pain in the surgical area.

Overall, Amber continues to make forward progress while moving through new phases each day. She is sore, tired and sometimes frustrated, but also taking in each breath and looking forward to feeling better. It’s only been 1 week since the transplant, which puts things into perspective. Days can seem to pass slowly when you’re in pain and wanting to be further along the healing process, yet in just seven days Amber has made truly incredible strides.
Love to all, Susie

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Leah’s Birthday– What A Gift

Hi everyone- I am sitting in Amber’s hospital room reading aloud the well wishes that hsve poured into the website since her surgery. The love and strength from all of you is so calming to her that she closes her eyes and rests while I read. She is so in need of rest. Laurie spent the night here last night- Amber was so drained that she couldn’t bear to be here alone. Amber got some sleep but still has plenty more to catch up on. I stole Leah last night and took her to dinner and drinks for her birthday, which is today. Laurie and Fred are spending some time with her now. So I am on Amber duty. I can’t help but watch her. She looks well today but still has a wealth of tubes and ivs connected to her. There is a tube from her nose into her belly pulling out some of the gastric bile. It’s making it very sore for her to swallow. She is not allowed to eat or drink yet- we are still waiting on x-ray results to see if that changes. She is preparing to go on a walk with her therapist. She says walking is not a problem- however the preperation is long because of all of the tubes that go along with her. It truly is a test of Amber’s patience and endurance. We all know she’ll pass with flying colors- it’s just hard while she is in the midst of it. Her lungs are doing great- thank God- no air leaks says the surgeon. She is such a miracle, a true angel in front of me.

I am headed back to Boston tonight- a bitter sweet departure. I am comfortable going home knowing that she is in great hands here at Duke- both medically and family wise. I am confident in her capability to handle her rough road of recovery and am thrilled to see her moving in a progressive direction. At the same time I hate leaving her, for mostly selfish reasons. It is so reassuring and comforting to be next her. I am so proud her- astonished really. She is so special to so many people. Thank you all for your support- it doesn’t go unnoticed. Love- Mackenzie

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Susie Checking In

Hi all, I’ve been a bit out of touch these past few days (not by choice) and will continue to be on the periphery of the developments at Duke. I am on my way out of town for a week and it is indeed strange that I can be writing an update from the airport, without my own computer- so close yet so far away. I have been sick with a sinus infection and unable to see Amber, Laurie, Leah and everyone. It’s been breaking my heart to not be at the hospital with Amber as she goes through this amazing and difficult transformation. She cannot afford to be exposed to any germs, especially now in her fragile state. The doctors have her on a very intense immuno-suppressent drug to avoid any potential rejection.

I did get to peek through the doorway last night and wave a temporary good-bye. Outfitted with mask, gown and gloves, I smiled with my eyes and muffled important questions. The first thing I noticed was that Amber is not struggling to breathe anymore. She is not taxed by each physical movement and she can take a deep breath effortlessly. Her face looks relaxed, even though she is wicked exhausted and thirsty. We expect that these next few days will afford her the chance to both rest and get back on her feet. She said that walking is no problem, she could keep going except that a myriad of tubes and monitors go with her. She’s able to feel her lungs, unlike the last time. She needs to get her digestive system back on track and from there it seems things will continue to rapidly fall into place.
Each day is a new story. Isn’t life amazing?
Love to all, we’ll keep you updated. Susie

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Day 4

Hello to all!

Life can sometimes feels like an uphill battle for all of us. Right now for Amber, the battle feels like Everest, and she’s climbing it in a hospital gown, without food or water, carrying an IV tree, with six chest tubes in her side, on no sleep. Today is day 4 and she has reached the summit (being transferred out of the ICU and on to the step down floor) and her oxygen saturation has not dropped below 91%, but the rest of her body is starting to react to the pressure. These side effects are normal for a feat so large, but they are uncomfortable nonetheless.

The good news is that Amber is very focused on reaching the top of her mountain. She has her eyes on the prize and understands that getting there can sometimes be painful, but conquering two double lung tranplants is something that few people can say that they have achieved, even fewer than those who have conquered Everest itself.

Amber continues to find comfort in your love and well wishes, as we update her on them every day.

Thanks for staying with us while we climb this mountain.

-Leah

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Day 3

Today Amber continues to make progress. She was able to walk 800′ without rest, on room air. She says it’s a relief to “be on the other side” of the surgery and that this time around it’s a lot easier than the first time. The reasons for this are that she is much more aware and conscious of what’s going on and because her room has open doors and family are able to be by her side.

The medical team is trying to alleviate some discomfort that Amber is having due to a gas bubble (visible on x-ray) in her disgestive system. She has had a few procedures to try and get her body plumbing back into order, but it is still not par and they are watching for any possibility of a bowel obstruction. She is not able to eat or drink anything which makes things a bit difficult.

Her respiratory system is working very well. Her O2 sats are between 90-96! She had a broncoscopy today (without sedation) and the doctors were happy with what they saw. She is not having any pain from the surgery as the epidural is still intact.

Amber is still in ICU. She’s only slept 3 hours since she woke up from surgery so we’re hoping she will get some sleep tonight. The nurses there are great, very capable and smart and are taking excellent care of her. Amber’s spirits are good and she continues to be alert and coherent.

Today is Fred’s birthday! Happy Birthday Fred!!!!!!!

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More Progress

Hi everyone- It’s Mackenzie. I arrived at Duke yesterday morning just as Amber was waking up from her 6 hour surgery. I knew the protocol here was very differnet than at MGH, but still expected to enter a very tense and fragile environment. Boy was I wrong. Although Amber still has a long road of recovery ahead of her, and many precautions to follow, she has progressed at a shockingly rapid pace. This seems to be the norm here at Duke. I have to say it is so comforting to be able to talk with her and assit her without having a glass wall between us, as was the case at MGH. Leah, Laurie, Rick, and myself got to the hospital early this afternoon. Fred had been here during the morning hours and said she was doing beautifully. Amber has been sitting in a recliner for mmost of the day and is currently taking her second walk, yes walk, of the day. Her breathing is stable and she is assisted only by a small amount of oxygen. It is so surreal to think that it took over 2 weeks for Amber to reach this stage in Boston. Her biggest complaint right now is her desire to drink. For now docs are only allowing her to have liquids with a thick consistency- not very thirst quenching. This prevents the possibility of aspirating. There has even been mention of Amber moving off the ICU ward and into a regular room this evening. It is truly amazing that one person can survive such trauma, not once, but twice. We are all so proud of her. She is a little person- but sure has a huge spirit. We will write more later. Hope everyone is well- Mackenzie

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Unbelievable!

It’s truly amazing! Amber is fully awake, extubated, and breathing on her own! She is talking and is also very surprised at her rapid progress. They may get her up tonight and into a chair. She is having some pain, but that’s not a surprise.

We were told that the recovery process here will be swift, but it’s really hard to take in how swift this is going. She just came out of surgery this morning! Compared to being in an induced coma for weeks, at MGH, this is almost incomprehensible. Even while Amber was on the vent today, she was reportedly calm and waving at the nurses. Here at Duke, removing the breathing tube and letting Amber breathe for the first time on her new lungs seemed to be a matter of procedure. During her last transplant, the buildup to extubation (drum roll please) was tantamount to an unveiling or a birth, after having to wait for what seemed a dreaded forever, coming in and out of consciousness, experiencing ICU psychosis and being in a totally isolated glass-walled room that only nurses and doctors could enter once they were gloved, masked and gowned up. Not here! The procedures and expectations are completely different. I don’t think she’ll be jogging by the end of the week, but hey, prove me wrong!

More tomorrow.
Love, Susie

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She Opened Her Eyes

Amber is in ICU now and has even shown some signs of waking up. She opened up her eyes and responded to some questions with a nod of the head. Laurie told her that the surgery went well and that she is such a brave woman. She shook her head knowlingly. Laurie told her that the doctors would be taking her to get a VQ scan and that when she got back to the room so the family could see her again, if she’s awake. The test is normal procedure to make sure that the blood supply from the pulmonary artery reaches the lungs and that the gas exchange is functioning well. She is intubated (on a ventilator), but is breathing room air!! Her O2 sats are 93! (for those that know what that means). Things will be progressing quickly, as had been foretold. More later. It’s exciting!

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In Recovery

Amber just came out of surgery and is in recovery. She will be in ICU in a few hours. The doctor said she didn’t bleed as much as they expected, which is good. There isn’t much more to tell at this point, but I will pass on the information as it comes. Amber, we love you!!!

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Retransplantation Underway!

Thank you God, thank you Goddess, thank you Universe, thank you dear departed spirit for your gift, thank you dear grieving family and loved ones- we are thinking of you. Thank you Duke Medical Center. Thank you dear family and friends, our familial circle, and extended well wishers and thoughtful people. Our angel Amber just got wheeled into the OR for her second double lung transplant. We found out an hour ago that the lungs were good and it’s a match for Amber. We waited for 13 hours to find out if the surgery was going to happen or not, and low and behold, yes, now is the time. The time we’ve been waiting for, really, since November.

She was ready. Laurie and Amber were in the car on their way to lunch, stealing a few hours away from the hospital. The call came while they were still in the car- they were summoned back immediately. That was at 1:00 pm, Thursday. Amber wasn’t able to eat or drink anything after that moment, yet she didn’t seem to mind (until towards the end when she desparately wanted to drink a Coke). We knew it could possibly be a “dry run” and that we were in for a big wait. We whiled away the time quite well- adrenelin does make the time pass more quickly!

Many of the nurses fell in love with Amber over these past weeks and showed their caring and affection for her. They know that the long wait has been difficult and they grew to appreciate her attitude and spirit. They came in tonight to say good luck and that they would be thinking of her, some said that they will come visit her on her new floor. It’s been a comfort to have the medical team not only taking care of her body, but also her heart.

Finally, the transplant coordinator called and said it’s a green light- shortly after that they came to take Amber to the OR. We all went in with her to the holding room for a final briefing and good byes. She was calm and confident. She has been briefed very thoroughly about what to expect and remembers her last transplant experience. She is in good hands. She will be prepared as much as possible for what lies ahead. And she will succeed.

Stay tuned. We love you.
Susie

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Still Waiting…

…and we’re still waiting. Haven’t heard anything from the doctors yet but we expect to at any time. As soon as we get word we will let everyone know. Thanks for sticking with us!

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Rumor Has It…

…that my new lungs are here! I got a call this afternoon from the transplant coordinator that there “may be potential lungs.” At this point it is still a rumor. I am waiting to see the doctor/surgeon for the official word. I have however begun the work-up, blood tests, x-ray, ekg, etc. We sould know for sure in the next few hours if the donor is a perfect match. If so I will will head into the OR this evening. Susie will keep you posted.

I am taking all the love everyone has sent me into the operating room and through the recovery phase. Thank you for all your eyes watching over me.

All my Love,
Amber Zoe

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She Got The Call!

Just got a text message that she got the call, im sure Susie will update this recent news to all with more details, but just wanted to let everyone else know of the good news……..

Good Luck Amber, Waltham will be praying for you,

Kevin and Dutchie

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Monday Monday

Yesterday Amber soared back up to her baseline and even a bit better. She went from mostly sleeping for 3 days, being in pain and not having enough breath to even talk (it’s not a pretty sight), to having a Sunday outing in the car and eating in a resturant! When she got back to room 7816 she was still energetic. We know she’s feeling good when she’s multi-tasking: sitting at her computer, watching the Super Bowl, eating enchiladas with sour cream and guacamole, calculating how much insulin she needs with the nurse, giving Leah some sisterly admonishment and advising Christina on her wedding planning, down to the details. It was like night and day, sun and moon, peanut butter and jelly. And a gigantic relief to have her back to her normal spunky self. Once she was out of pain and off the pain medication she started to slowly recover. Another artful massage really helped to bring Amber back. Thank you again Radonna!

When most of us have something physically stressful to deal with, such as pain or exertion, we can recover. For Amber, her already dismal respiration system cannot take care of any extra demands. It literally takes her breath away and all she can do is try to stay calm and breathe as deeply as she can even though she is not getting enough oxygen in each breath. You can imagine, it’s hard to see her struggle. We’re glad she’s in the hospital where she can be well taken care of, especially during those times.

Now, it’s back to the waiting game. It makes me think of the games we played as kids, like when you’re stuck in the car and have to pass the time. We used to spell words from the liscence plates of passing cars or be the first one to spot all the animals you’d need for a complete farm (a cow here, a sheep there). Now we have the electronic age to occupy us and there’s no end to having access to any sort of stimulation or entertainment. It doesn’t really make the waiting any easier, though. We still run for the phone from all corners of the apartment, thinking this is the time. We’re still talking about our favorite foods and planning the next meal. We’re still playing games (I think Leah and Christina must have set a new record for continuous number of UNO games). We’re just doing it with a smile again. We really are ready now. Let there be lungs!
Love to all, Susie

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Not Yet

Amber has had a couple of tough days, being short of breath and having back pain, caused from a medication that boosts her white blood cell count. Earlier in the week she was feeling good enough to leave the hospital to go home to the apartment for a few hours where we enjoyed a Laurie’s home-cooked meal and a movie. Today, though, she is tired and sleeping a lot. She says she’s due for a good day tomorrow.

Each month the transplant team rotates the pulmonoligist on rounds. Amber met her new doctor yesterday. He wants her blood sugar levels to be more stable and has her eating more times during the day and taking insulin each time she eats. She has to count the carbs at each meal in order to determine the amount of insulin. She’s very good at it, of course. We continue to try and entice her with a variety of meals and snacks. It’s too bad she doesn’t naturally like to eat fattening foods, although she has gained 5 pounds. That made the doctors happy.

We continue to wait patiently and look ahead to transplant day. We’ve settled on a few hand signals for when Amber is in ICU and unable to talk because of being intubated. She remembered that last time she got too hot and couldn’t communicate it. This time, we’ll be prepared. She’s got her sign language down to indicate when she’s too hot or too cold or wants the nurse to take the covers off her feet! It’s so annoying when you have something bothering you but can’t do anything about it or can’t communicate it to someone. We’ll know better too how to handle the re-entry, though things here at Duke will be very different than it was at MGH, I’m sure.

Thanks for checking in and waiting with us. Your messages, prayers and good thoughts mean a lot to all of us. We’ll keep you posted!

Love, Susie

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Hang Time

This weekend brought us sunshine and loved ones from Boston, but no new lungs. Quality time with family and friends, cards and gifts and excellent take out food helps to pass the time, but it remains a strain to be waiting, waiting, waiting. Amber had a couple of tough days with being short of breath (on top of being short of breath), and laid low and quiet. It can be stressful for her loved ones when she’s not at her baseline, meaning she’s able to sit up in bed, do her daily lap/s or minutes on the bike, have short conversations, is interested in her e-mail or magazines, jokes around with Miss Barbara, play a game or watch a show. Those are the things she does when she’s at full strength (bonus is a make-up or spa session).

When she’s “short”, she hunches forward into a posture that makes it easiest for her to breathe. She uses her techniques to try to “catch up” like exhaling through her mouth, such as blowing out birthday candles, and staying calm and consistent while trying to breathe as deeply as she can. It could take anywhere from 5 minutes to 5 hours to finally catch up. When you’re with her, you feel helpless. I find myself involuntarily taking deeper breaths. Leah asks for reassurance, “Are you feeling better?” She likes her back rubbed or her legs or arms tickled. I think it helps with a calming affect.

Yesterday Amber received an incredible gift. A wonderful bodyworker came to her room and gave her a miracle massage. Afterwards, Amber was more revitalized and relaxed than she had been in a long time. She was able to ride the bike for 13 minutes (usually it’s 4-5 minutes) and talk on the phone for an hour to a friend who recently had a lung transplant in Texas. WOW! Thank you Radonna!

It’s strange to be so eager for something like a lung transplant operation to happen. Something so intense and scary. Amber’s been through it before and knows what to expect. She’s not scared. We know when it happens, the waiting will be over and the days in the hospital will be numbered. Amber will be able to breathe again and can start her rehab and her roadway to normal life activities again. We can stop waiting for the phone call and being alerted by each helicopter that flies by.

No matter how routine things may seem on a daily basis, the reality is that we are living in hang time. These past months have thankfully led us here to Duke and to the doctors and professionals that are skillfully taking care of Amber. It has been stressful, unpredictable and demanding. Laurie and Leah have temporarily relocated their lives. Amber has been living in a hospital for 37 days. It’s times like these where those old cliches come to mind: the tire meets the pavement, the going gets rough, gutting it out, finding the metal (or is it mettle). When events change our lives in significant ways that we didn’t predict or can’t control, it’s how we deal with it that matters.
Love and endurance, Susie

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Still Waiting…

We’re here, still, in room 7816. Although it IS the most spacious room on the floor and feels pretty darned homey, it is still the hospital. Each day we think of new time-burning strategies. I’ll share a few with you, so you can imagine being here in Amber’s hospital room with us.

The first and most popular strategy is to talk about all the foods we like and don’t like. Some I’ve never heard of (jello jigglers & sour Patch kids). Amber and Leah love pickles, deviled eggs and honey mustard pretzels. I hate all things sour. Laurie loves to make ordinary foods interesting by adding random ingredients like horseradish to tuna fish sandwiches. Once Amber eats anything, then we proceed to talk about how much insulin she’ll need to cover, since she’s not on a regular dosage. It’s not really much of a guess, since she usually knows how much she’ll need without having to check her blood sugars. We’re always encouraging her to eat and we try to come up with suggestions that may sound appetizing. She weighs 90 pounds and doesn’t have much of an appetite most of the time.

Next, we’ll decide if we want to play a game or watch tv. Usually the choice is a game, like Urban Myth, Rummikub, Catch Phrase or Loaded Questions. Some games make you feel smart, and some make you feel stupid: example: Music can tame a savage beast- truth or myth? The British invented baseball- truth or myth?

Tv favorites include (as I mentioned before) American Idol, Grey’s Anatomy (the drama factor stands out more when you’re actually IN a real hospital), football games and local news. We now have the TV cart with the dvd player in the room, so we’ve begun renting movies. Tonight’s testosterone double feature includes The Guardian and The Gridiron Gang. I think the amount of energy expended while watching these movies should count as part of Amber’s daily workout. I’ll include it on the board posted in her room that records the number of minutes she rides the stationery bike and the number of laps she walks around the floor.

Sometimes Laurie will spend the night in Amber’s room on the pull-out couch. I can only imagine the scene when the nurses come in during the night to take vitals. I’m sure it must seem as if there’s a slumber party going on. Blankets and throws from home cover the beds and couches, purses and bags of “stuff” litter every flat surface (tables, shelves, window ledges), room adornments are hanging from the IV poles, magazines, books, laptops, make-up, nail polish, groceries and games live here along with the “ideal”
(according to Dr. Zaas) lung transplant patient, Amber Wesemann.

Everyone here loves caring for Amber and some of her nurses are downright protective and doting. They are impressed (as we all are) with how sturdy and tough, even-tempered and polite and consistently optimistic she is, even while she is being poked with needles, gasping for air, exhausted and taxed. She is still in control and can talk shop with any fellow or resident, pharmacist, therapist or specialist. They love her for her attitude and for the responsibility she takes for her treatment and her situation. We do too, and for her incredible spirit that profoundly touches us all.

Two transplants happened this past weekend. We’re ready to be the next family to say “see ya on the other side” and send her into the O.R. with kisses and prayers.

We’ll keep you posted. Love, Susie

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Anything But Routine

Of the past 30 days, Amber has been a resident of the Duke University Medical Center for 22 days, and counting. She will be here until she gets her transplant. Hospital life is a normal routine for her, at this point, and feels almost like home, or at least familiar. She is back in the roomy VIP quarters and it looks quite lived in; stocked refrigerator, blankets and pillows from home, books, laptop, games and lots of snacks. She knows the friendly staff by name, the nurses, pts, rts, food service workers, environmental services workers and the rest of the people who work on the 7th floor (the pulmonary floor). They know her too, and all her unique food requests, medications, volatile blood sugar values, oxygen requirements, sleeping routines, exercise routines and family visit routines.

Her life is anything but routine, however, as each day is different from the next. The past 2 days have been good ones; meaning no crisis. Today, though, during her “routine” physical therapy, consisting of walking laps around the hospital floor, Amber’s breathing went South. She quickly got short of breath after walking only half the distance she walked yesterday. Today, she walked 100′ and had to rest, then another 100′ and another rest. Soon she had a hall escort with the nurses wanting her therapy to be curtailed, the pt wanting her to push on, and an aide pushing an office chair on wheels behind the brigade, ready to catch a falling Amber, and Amber wanting them to work it out and make a decision while trying to catch her breath. Eventually she was wheeled back to her room to recover and spent the next few hours on her Bipap machine, which helps her to breathe by reducing the inhalation and exhalation resistance.

Once Amber was back to her baseline, we were ready to party and celebrate Laurie’s birthday! Tonight we’ll be watching American Idol and eating something yummy coupled with a birthday foot and neck massage, gifts and cards for the birthday girl.

Now that I’m back, you all won’t have to wait so long in between updates. I really enjoy writing them and keeping everyone informed. It’s great to have you with us on this important journey; your love and support helps us so much.

Peace out. Susie

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Amber

Life is a journey. Here we are at Duke University Hospital waiting for a suitable transplant donor for Amber. She has a great team of doctors and therapist working hard to get the best match for her. Today we received the good news that the pool of possible donors has been expanded based on something I can’t begin to explain. We are all positive, faithful and hopeful that a perfect as possible pair of lungs will present themselves soon.
Ambers challenge is to breathe, she has little lung function left but thankfully that seems to be holding steady. She has to keep her nutrition up and some activity so she stays strong in body like she is in spirit. Everyday there are shinning moments mixed with the struggle to breathe after some simple (for us) activity.
For example, we beg Amber to think of anything we can bring her to eat ‘ANYTHING!’. Last evening Fred brought her in a Arby’s sandwich and we watched her eat it in about 6 bites. You never saw people so happy to see such a thing.
It looks like the plan is to keep Amber in the hospital until transplant. They are taking really good care of her, and of course she is running the show. This evening we are all going to play a game ‘catch phrase’. While I have been here I have given Amber lots of foot and back rubs. She says I’m really good at it and should never stop doing it.
For sure there is a lot of sweetness and love in this family. There is a lot of energy from all your love, thoughts and prayers and Fred, Laurie, Amber and Leah thank you as it gives them great strength and comfort.

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Hi Ya’ll

Hello friends!! I’ve been pretty busy lately, so I haven’t written on this forum yet. We’ve had the good fortune of my sister Susie being here and keeping you all abreast of the journey we’ve been on. She will be back here in N.C. next Sunday, but until then hopefully I can fill in.
Amber was discharged from the hospital, her third admission since we’ve been here, on Thurs. and went back to pulmonary rehab on Fri. There we saw two young women who had had transplants on Christmas weekend (they did 4 that weekend) and they were already out of the hospital and back to rehab!!!! Unbelievable! They looked great! Amber was just emerging from her induced coma in that amount of time. She was told she does not have the luxury of a coma this time, she’ll be up and walking the day after surgery, chest tubes and all. Every day is different for her, some better than others. Fri. she was a ball of fire, Sat. we went down to a hip district in our neiborhood and sat outside a cafe in the sun….75 degrees…but she faded quickly and we went home. Today, Sunday, she has been very low key, calling the on call transplant coordinator to up her steroids and staying on her bipap machine most of the day. Tomorrow she will go to her first real appt. at the transplant clinic (uping it from Thurs.) for blood tests, PFTs, chest xray and doctor’s visit. I think she is relieved she will be missing pulm. rehab for the day (but if I know them, they will have her go there after her appt. is done).
Soooooo, we are just waiting for that call, listening to helicopters flying over our appt. roof several times a day, and just hoping her new lungs will come soon. Amber never ceases to amaze me with her courage and tenacity for life,..she is a warrioress of high proportion and fights her battles with amazing strength…even when she has no strength. She is a lesson for us all.
Thank you all so much for your kind messages, prayers, gifts, cards, calls, and keeping us in your thoughts. We are all way behind in our thank you notes, but please know we appreciate every effort made to comfort and support us. We love you all!!!!!!
Thank you, and God bless you. Love, Laurie

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Another Year Later

….another year older! I was dischrged from the hospital in time to spend my birthday at my new home. It was a good day– simple, quiet and relaxing, just what I needed.

WOW! What a whirlwind! What can I say? I am just now able to think clearly and write, thanks to Susie for updating you so I don’t have to retell all the drama of the past few weeks. First I want to thank everone who helped me get here to Duke and to get relocated so I could be activated on the transplant list. It was quite an ordeal but it seems as if everything has fallen into place. Thank you!

I am active on the transplant list. Doctors seem to think it will be any day now. I have began pulmonary rehab (PR). I am the youngest and can do the least–go figure. The facilities are amazing! Today was a short day, but as of Tuesday it will be 4 hours a day. I lift weights, floor exercise, walk on track and do the bike, plus there is a hour lecture on various topics. This is the same routine I will be on post tranplant. Then, at least, the exercise will become easier and I won’t be struggling for breath.

Duke’s philosophy on transplant is very different than MGH. As Susie told you they will have me up and walking within 24hrs of the surgery. They do not put me in isolation, and I will only spend a few days in ICU. If all goes well I could spend less then 2 weeks in the hospital. The average wait here for lungs is about a month. Yesterday when I was at PR some guy got the call, he was only listed on tuesday, less then 48hrs!!

The new apartment is perfect! Its about a mile from the Duke campus, close to shops and resturants. Loft style, modern, Laurie and Leah have made it into a home. There are plenty of amenities within the complex to keep us busy. After recovery I will be able to use the pool (yes in March!!) and gym, as I am looking forward to this day!

I will continue to update as things progress, but there isn’t much more we can do but wait. I hope to get the call soon– but they often have dry runs. A dry run is when you get the call and they have you come in and prep for surgery and then it is canceled at the last minute due to something being wrong with the lungs….lets cross our fingers for none of these.

Happy New Year! Amber

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Finally Listed

Late last evening Amber was “listed” with UNOS, United Network of Organ Sharing. The staff here at Duke worked past normal hours to get all the paperwork and test results processed so that she could be listed before the Holidays. This means that she can be called for a transplant, at any time day or night, as soon as a matching donor is identified. This is wonderful news for us, but it will mean unfortunate news for another family. Once again, we are made clearly aware that one family’s sorrow can result in saving the life of another person. Dr. Eu, Amber’s pulmonary doctor, said that during this time of year there will be more donors available, due to the holidays and an increase in deaths. Truly a melancholy thought.

This waiting time is somewhat unnerving, especially at night when the phone rings and we rush to answer, anticipating news from the hospital. We were warned of the possibility of a “dry run”, which happens often. We could get a call and Amber would be prepped for the OR, then at the last minute the surgery could be called off due to the lungs not being suitable. This is a difficult scenario and one we hope to be spared, but of course, there are never any guarantees.

Amber is ready, though, for the next step. She is able to put the surgery in the back of her mind, for the most part, as she follows her daily hospital routine. She’s been told that most lung transplant patients are extubated as soon as possible following surgery, sometimes the next day. They will try to get her up and “walking”, being supported by an army of nurses and physical therapists, within 2 days of surgery, as long as there are no complications. This will certainly be difficult, but we know that Amber is such a fighter and she will draw on her incredible will and strength to do it.

In the meantime, the family is scurring around, trying to make a home here in Durham. Laurie, Amber and Leah will be temporarily transplanted into an apartment, requiring a large logistical effort on the part of everyone. It is coming together and they should have a comfortable place by Christmas.

Most people who read the postings on this website have participated in the fundraising events. I’d like to say THANK YOU again. The fund is really helping to make Amber’s retransplantation a reality. We have relyed on this financial support to take care of Amber’s needs. When we use the money that so many of you helped to raise, it feels like an extension of your love and caring for her, and for us. “Tis the season” has never meant more to this family. No gifts, lighted trees, decorations, festive meals (which we’re famous for) can hold a candle to the gift we are receiving in 2006- the hope for Amber’s new lungs and the blanket of support surrounding all of us. May we all feel blessings of love and caring for one other throughout this seaon, and beyond. Love to you all, Susie

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Time For Time

No time is being wasted getting Amber ready for transplantation. She had more testing done today, consisting of a pleasant barium beverage for breakfast and your yearly women’s exam, topped off by an hour of physical therapy (with several “rest breaks”) and more needle sticks to the artery. Sound like a day’s worth of fun? No matter, it’s all “a day in the life” of a lung transplant girl.

Amber takes it very well. Yes, she looks the other way when she’s being stuck, she concentrates on her new relaxation and breathing techniques when she’s feeling anxious (which is more often now that her chill pills have been DC’d) and she jokes around with the lunch lady, Miss Barbara, while listening to her stories about her mama and her chihuahas. In sharp contrast to the hurried efficiency of Boston, here they love to visit and chat while getting the job done. Nice….and …. slow…and….friendly….y’all.

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Great News!

WORD IS OUT; we got the wonderful news today from the Duke lung transplant team that Amber has been accepted for retransplantation! The transplant coordinator let us know that they were very impressed with Amber and her committment to move here for a year to be near her doctors and for her follow up care. The team didn’t find any contraindications for another transplant and they are going to move quickly to get her listed since there is an urgency to her condition. We expect that to happen in the next couple of days. Amber will be getting into pulmonary rehab soon and she is already doing physical therapy in the hospital. She is receiving training on relaxation and breathing techniques to offset the effects of anxiety and stress. The team really takes a wholistic approach and will be working hard to get Amber into as good a condition as possible before the surgery.

Since Amber is currently the only type B blood patient in the program, she is in a higher allocation position for an organ donation. Of course, no one can predict when Amber will be called for the transplant, but she will be ready when it happens- once again.

Amber’s doctor may want to keep her in the hospital until her transplant, but for sure she’ll be here until after Christmas. She is maintaining well and is recieving wonderful care here at Duke. It’s Southern hospital-itality at it’s best!

Amber’s new mailing address is:
2211 Hillsborough Road #4078
Durham, NC 27705

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Over The Weekend

The past 2 days have been quite stressful. On Saturday Amber had to be taken to Duke Medical Center’s emergency room. She was having a lot of difficulty breathing over the course of a few days, and was exhausted from the week of testing. Her lungs aren’t able to expire the carbon dioxide that gets produced during the normal course of breathing, and it was accumulating in her bloodstream causing her to be very tired and sleepy. We had been giving her as much oxygen as we were equipped to administer, here in the hotel room, but Amber needed more help than that. ER treated her hypoxia with steroids and other medications and put her on a machine which assists her lungs to inhale and exhale (not a ventilator). Over time her levels came back to her normal baseline and she was feeling better, though still quite exhausted. She was kept in ICU overnight and was closely watched. Yesterday she was moved to the medical floor and is now resting comfortably in a private room. Duke’s transplant team doctors have been visiting her today, asking questions in preparation for their meeting tomorrow, and answering our questions related to her present condition. Amber was feeling pretty good this morning, although we don’t know when she will be discharged from the hospital. We are in a holding pattern until tomorrow and feeling secure that Amber is being very well cared for. She has her laptop in the hospital room and is checking her website- she wants people to know how much she appreciates all the love being sent to her and all the messages you are writing.
take care, Susie

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Assessment Completed!

Testing at Duke Medical Center was completed yesterday afternoon. After all the blood tests, pulmonary tests, cardiac tests, radioactive eggs and toast, isotope IVs, rehab program activities, numerous meetings and questionairres, we are more than convinced that Duke is the place to be! They are so thorough, professional and supportive. The week of testing has really taken a lot out of Amber, she is quite exhausted and ready to lie low for a bit. She hasn’t been able to get out and see much of this area, except for an extensive tour of the medical facility. As for the family, what we’ve seen, we’re really impressed… and it’s warm and sunny here to boot.

The lung transplant team at Duke could be described as aggressive. They are agressive about organ procurement, they are strict about pre & post transplant care and follow-up, and they are demanding of their patients. They are a close knit, experienced, well-oiled machine and have performed over 700 lung transplants, averaging 70-80 per year. Their rehab program is extensive and well laid out, with an incredible facility for their patients.

At this point, we are waiting for the team to review the results of all the tests done on Amber. There are many factors to consider when deciding if she is a candidate for their program. We are hoping that everything is going to line up for Amber and that she will be accepted. We will find out about their decision next week.

One of the factors the team takes into consideration is what kind of support network the patient has, and what capability the family has for caring for her during this extremely difficult and challenging timeframe. When this topic came up, it was evident that Amber has an outstanding team behind her. She is blessed with a strong and dedicated family, an army of friends and an extended circle of people that show their love and support in numerous ways. The transplant team definitely noticed this and was clearly impressed. So are we, every day.

We are for the most part, upbeat, relieved, hopeful, excited and eager to make plans for the future. When I ask Amber to express how she is feeling right now, as we wait for an answer from Duke, her body speaks louder than words. She is too tired to be feeling all the things we are. She’d like to get this all over with, to be on the other side of the next operation, the hospitalization, the physical therapy, the medications, the anticipated experience that only she knows what is involved, and most of all, to be able to just breathe. She is taking things a day at a time. What else can anybody do?

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Hosptial Bed To The Running Track

Last night Amber spent the night in a VIP private deluxe room at Duke Medical Center. She was looking very comfortable there. The first thing the pulmonologist said to her was, “Ms. Wesemann, we don’t want you to think all our rooms are like this”. She did get VIP treatment though, as it seems all patients here recieve.

Amber was discharged from the hospital this morning in time to make it to her 9:30 appointment with the physical terrorists, I mean therapists. Although PTs are notorious for making life painful, today’s visit was actually a high point thus far. The test she was expected to complete was a 6-minute walk around the track. We have been dreading this test because it takes all the air she’s got just to walk to the bathroom and her respiratory attacks have been offset by physical activity. Coming directly from her hospital bed, Amber burned up the track, toting her oxygen and completing the walk with only one short rest stop. She rose to the occasion and gave it her all. Leah, Laurie and I were biting our nails for the whole 6 long minutes. When she finished, we were not only blown away that she was able to do the whole test, we were amazed and delighted. The PT was very attentive, checking her as necessary, yet expecting the most from her. If Amber is accepted by Duke, she will be spending a lot of time at the Center for Living with the therapists, before and after the transplant. Its obvious that they are very committed to health and exercise and will help Amber achieve her optimal results. Duke’s staff and their lung transplant program is such a refreshing breath of fresh air. Everyone has been so nice and accommodating. Tomorrow will be another full day. We’ll let you know how it goes.
Love to all. Susie

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Update From Duke

Yesterday began Duke’s week-long lung transplant program assessment. For the first test, Amber had to eat radioactive eggs and toast so they could watch how her body digests food. This test is called gastric emptying. After about 4 hours, her stomach was empty, then she had labs drawn. They took 23 viles of blood to analyze. That was a full day and she returned to the hotel room quite exhausted. Today, she had to be at the Duke Medical Center at 7am to have a cardiac catherization. They want to be sure her heart and circulatory system are ok. The test took only about an hour, but afterwards she had to go to recovery and lay still for 3 hours to prevent bleeding from the insertion site. Once she was able to start moving about, she became over-exerted from eating and walking around, and she got short of breath. Amber was not able to “catch up” and had a similiar event as last week when she had to be taken to ER. The doctors decided to admit Amber to the hospital overnight, but tomorrow morning she will resume her testing. Tonight she is resting comfortably at the Duke University Hospital and is being observed by a very nice doctor from the lung transplant team. We are feeling great about the medical staff at Duke and the care they take for their patients. They have a very large program and perform about 60 lung transplants and 8-10 retransplants per year. The transplant team consists of the pulmonoligists, the surgeons, the social workers, the psychologist, the therapists, the coordinators, and they are a very tight team. Once all the tests are finished, at the end of the week, the results will be discussed early next week and they will inform patients on Tuesday if they are accepted for a lung transplant. Right now, we are just taking things a day at a time. Thanks for checking in and for your love and prayers. Susie

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We Made It

After 16 hours of pleasant travel, we arrived yesterday in Durham, NC. Traveling in the 25′ RV, “The Chalet”, was nice- us passengers could sleep on a comfortable bed, make lunch, sit at the table and play games, listen to CDs, read and talk. The pilot drove expertly for 10 hours the first day and the navigator led us smoothly through massive road snarls and busy metropolitan areas (thanks David and Fred). We stayed overnight just out of Washington, DC and had a leisurly second day’s drive to arrive here in time to check in, pick up the rental car and find a place for dinner. Amber did really well and the trip went very obstacle-free. This morning Amber, Laurie, Leah and Fred left early for the appointment at Duke. We are all having great anticipation about this week, the testing and the results and will let you know what we know as we know it! love xoxo

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Set To Go…

I was dischcharged from the hospital today from my “tune-up.” I got my fluids topped off and my white blood cells charged up. Ready for the long haul down to North Carolina!
We will be leaving tomorrow morning. I anticipate a week of testing for the evaluation at Duke, all of which I have done before at Mass General for the first transplant. Once the testing is over, my family will fly home and my mom and I will wait in NC until Duke informs me if I am a candidate for their transplant program.
We will keep you updated along the way.
I love reading your well wishes. Thank you!
Love, Amber

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On To Duke

After Amber’s scary episode on Monday, things are looking up. We are now full tilt boogey making plans for a road trip to North Carolina. She is looking good, feeling better and her white blood cell count is higher. She doesn’t need the Medi Vac, but commercial airline travel is still not a good option, so we rented a 25′ RV. I hope it’s big enough for 7 passengers. We will of course be packed to the gills with food and beverage, clothing, blankets, pots and pans, 2 oxygen concentrators, portable oxygen tanks,and oh did I mention nebulizer machine, wheelchair, crutches, shower bench, laptops, dvds, cds, etc. This family never did travel light. We are leaving Boston on Saturday morning and plan to arrive in Durham on Sunday. Amber starts her week of testing and evaluation at Duke University Medical Center on Monday. There is no guarantee that she will be a candidate or will be accepted for retransplantation, but that is our wish and hope. Duke is an excellent transplant center and they do many each year. We are very hopeful at this point. We will keep everyone posted and love that you are all with us on our angel flight. susie

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Roller Coaster Ride

Thank you Lindsey for your update- it truly has been a packed 24 hours. Amber has had an even more difficult time breathing these past couple of days and yesterday morning she couldn’t “catch up” after eating breakfast and walking to the bathroom. These are activities that most people take for granted, but it required more oxygen than Amber was able to provide for her body and it maxed her out. The ambulance took her, along with Laurie and Fred, to MGH where she was in the ER for 5-6 hours, and was given IV fluids, steroids, nebulizer treatments and morphine. Finally, she stabilized and was moved to the transplant floor where she will be there for another day or two. Her body was working so hard to breath that is was like having an aerobic workout for 6 hours. She was sweating and her heartrate was quite elevated. By evening, though, she was sitting up and eating lightly, feeling much better and able to joke and talk again. WHEW! We have the green light to go to Duke for an evaluation for a retransplantation and are waiting for arrangements for a medi-vac flight to take Amber to North Carolina. In retrospect, and now that Amber is stabilized, we feel that things have worked out this way for the best. Now we have the support of MGH for Amber’s interim care and to arrange things for her travel. We will keep everyone posted more regularly as to what develops. Your love and support is SO important. Although Amber can’t recieve visitors because her white blood cell count is very low and she is vulnerable to infection, she is checking her website and she knows everyone is with her, helping her through this incredibly challenging time. We are all “feeling the love”. take care, Susie

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Updates

Posted – 12/05/2006 : 12:10:20 AM
Hi all. Thought I would try and post here to let everyone know whats going on to the best of my knowledge. In case you’re wondering who I am, this is Lindsey, one of Rick’s daughters and a resident of 49 Vine St. – Amber’s homebase these past few weeks. It’s been a very busy here lately, and it’s been wonderful having so many friends and family around (…not so wonderful that i’ve gained 6 pounds… special thanks to Amber who has kept a steady stream of brie in the house). Amber’s best friends in the world were here last week and they let me know that people check this regularly so I wanted to post a message here tonight, as I sit in this eerily quiet house, to let you know that Amber went by ambulance to Mass General this morning, and is there now until she is taken by medflight to Duke (hospital, or medical center, i am actually not sure of the complete name) in North Carolina tomorrow. It’s my understanding (info traveling from Laurie to my dad) that Amber is able to get more oxygen at the hospital that she was able to get through the tanks here at home, and that she is doing slightly better now. The plan is to go to Duke for evaluation on the possibility of re-transplantation but I can’t say too much on that subject because I don’t want to give any misinformation. Laurie, Fred, Susie, Leah and Laurie’s brother are all with Amber at the hospital, and although I’m not sure who will going in the medflight with Amber down to Duke, my dad said everyone else would be piling in a rental van and heading down after her. I am sure someone will post an update in the coming days, but until then I just wanted to post as much info as I could. Lastly, I will say that I feel very blessed to have lived under this roof with Amber, and her family and friends these past few weeks… we all know Amber’s a trooper, but the strength, love and support everyone has shown has been unbelieveable – I almost feel like we’re all part of Amber’s army – she may be on the frontline fighting, but she knows we’re all behind her. Keep checking in for updates…
Sincerely,
Lindsey Berry

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As Things Progress

Posted – 12/02/2006 : 1:00:16 PM
Greetings! During these past days we have met with a thoracic surgeon and a lung transplant doctor at Brigham and Women’s Hospital. They were both very helpful, supportive and informative. At this point, another lung transplant is what Amber needs. Although there exist several different procedures to try and stop the process of rejection, some are not very effective, some are considered experimental, and some are not appropriate for Amber since her rejection is severe and her lung capacity is so low. The process of a retransplantation is very difficult and there are only a few centers in the country that have much experience doing it. Laurie is a fierce mother bear and is tracking down all possible opportunities for retransplantation. You can imagine this is a very involved process. It requires identifying the potential lung transplant centers and surgeons who are experienced and do retransplantations, contacting them, corresponding with them regarding Amber’s medical history, making a case for Amber, trying to schedule appointments, travel arrangements, insurance protocol and more. We hope to have something lined up by next week, at least for an evaluation for a retransplantation. In the meantime, Amber is working very hard. She is a fighter, we all know that, and it’s taking everything she has to stay strong and positive. Her body is giving her the type of challenge that none of us could imagine enduring, yet she is facing it, with all of us behind her. The power of love is incredible.

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What’s Happening Now

Hello family and friends; thank you for your calls, messages, thoughts and prayers. Amber would like you all to know that she is very appreciative and is having a difficult time responding right now. She is in chronic rejection of her new lungs which makes it difficult for her to breathe, and therefore to go about the activities of daily life. She is, of course, well cared for by her family and is working on gaining weight (eating fattening delicious things) and keeping her body working as much as possible. This consists of passive resistance exercises in bed as well as walking around the house as much as she can tolerate. Her breathing is being augmented with oxygen. Right now, we are investigating new courses of treatment for Amber. As this week and next week progress, we hope to have a more clear direction on what the next step is. We are in the information gathering stage which takes time and patience. We will be posting updates regularly to keep everyone informed about how Amber is doing. Your love matters. Susie

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No MGH

As some of you may know Amber went to MGH last Wednesday and expected to be admitted. The doctors decided that she would be getting the same treatment there as she would at home- and therefore preferred her not to be admitted. So Amber remains with her Mom, Dad, sister, and family in Saugus. Susie arrived Saturday and will be updating the website in the next few days. It’s a stressful time right now- some days are definately worse than others. Please take time to have a wonderful Thanksgiving spent with those you love! I’ll write soon- Mackenzie

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Back To MGH

This afternoon I am headed back to Mass General Hospital. Over the weekend my breathing seemed to diminish and it became harder and harder to breath without oxygen. Even walking flat surfaces and in the sitting position was difficult. I am now on oxygen full time. We think it is best that I be re-admitted to the hospital so the doctors can monitor how my lung function has decreased with specific tests. I believe time is of the essece in this case, and MGH needs to make a decision about their plans and involvment in my medical future. I hope to only be in Mass General a few days, but as all of you know there are no quick answers or solutions around that huge place.
With Love,
Amber

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Strength In Numbers

The waiting game is amping up, people. Besides the “routine” hospital events, you know, like, needle sticks, nasty medicinal mouthwashes, neighboring patients who moan and groan, breathing treatments, hall walking and stationary bike riding (now in the room!), trips to the cafeteria, and more, we are dealing with the increasing pressure of WHEN. The staff here imply that it will be very soon. It must be based on other patients’ experiences. We all know that Amber is SPECIAL, though. Her blood type and body size make the ideal set of lungs harder to find. The transplant team, however, just relaxed some of the parameters for the donor lungs, which had excluded 80% of potential donors. Also, her allocation score was recently increased due to her blood gas values and pulmonary function test scores, making her further to the top of the list, regionally. So……….. we expect a call anytime, and are hoping for it.

In the meantime, we knew this would take sacrifices on the part of the family. For example, I will now be rooting for the Duke University Basketball teams anytime they play(unless by some miracle they are matched up against the Oregon Ducks, right). Other sacrifices include, watching American Idol, playing Texas Hold ‘em using gummy bears as poker chips, eating cafeteria sushi and buying Duke University t-shirts and hats. It’s not really so bad since we know how to entertain ourselves. We have also started a family style betting pool to make the waiting time fun and competitive. Some people think since we’re on-site we have insider information about when we’ll get the call. NOT. If I was psychic I wouldn’t have lost money on the Ohio State football game (any Patriot fans who want to bet on the game this weekend?).

Now that my sister is yet another year older than me she has to pay special attention to her health and fitness. She walks to the hospital from the apartment while I use valet parking. She’s drinking skinny mocha lattes while I drink breves. She’s going to the fitness room regularly and taking time for herself. It’s great having an older sister for a role model.

Amber can actually see the apartment building from her hospital bed. She’s been here long enough that she’s gained the confidence of some of the staff. She’s getting some inside scoop on a few of the other patients and juicy relationship gossip. This important information will serve her well when she needs an early sleeping pill or an extra evening snack.

So everybody, let’s continue to put our collective requests out there for a new set of lungs for Amber. Ones that her body will not just accept, but will embrace. Let’s ask for them ASAP, if possible. We have all been with her through this incredibly challenging time and now we need to kick it up. I truly believe in the power we generate together.

Even in the midst of this holding pattern, Amber is thinking about life on the other side of the surgery… and the initial grueling rehab it will take to get her back on her feet. Jump forward to about April, and see her jogging, tanning by the pool, being several pounds heavier, excited about going to her rehab, calling all of you on the phone and best of all, laughing deep belly laughs, with no effort.

See it. Be it.
Love, Susie

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Hello

For the past 26 years (well, 23 for me), we’ve had a plan or a next step in treating Amber’s illness, which has made dealing with it slightly more manageable. At first we held out hope for a cure, trying to contribute as much as we could by participating in CF walks and other fundraising events. Then, when it was obvious that we could not wait for a cure, we looked towards a transplant and became consumed with planning, fundraising, and hoping for that day to come. Once it happened, as you all know, an enormous weight was lifted from our shoulders, and for the first time since I was old enough to understand, my apprehension subsided and I felt what it was like to plan for a future that wasn’t going to be built on a foundation of uncertainty and fear. That relief now feels like it’s a million miles away and having had a taste of it makes it quite a bit harder than it ever was in the first place.
But, in true Wesemann fashion, we are in the process of figuring out a plan to deal with this situation. As with all of our plans, it surely won’t be easy, but we’ve spent too long working for a future for Amber, for all of us, and we will continue to do so. The “little general” has a whole army behind her, helping her fight her battles, and we won’t stop fighting until the war has been won.

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BOS

Posted – 11/03/2006 : 08:35:19 AM
This article is a bit technical, but I think you can read it and understand the main points.
http://www.jhltonline.org/article/PIIS1053249802003984/fulltext

Less technical article:
http://ajrccm.atsjournals.org/cgi/content/full/166/4/440?ijkey=2ef0dca324e0bdea7535bbac80967c611bd7522a&keytype2=tf_ipsecsha

Some innovative therapies:
cyclosporin: http://www.jci.org/cgi/content/full/115/5/1133
fundoplication: http://www.dukemednews.org/news/article.php?id=5499
photopheresis: http://jtcs.ctsnetjournals.org/cgi/content/abstract/117/6/1063

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Facing The News

I am sorry I am not able to personally call all of you and explain the situation– good reason for this site. I know there is a large phone tree out there though. The news still hasn’t fully sunk in with me either. It seems so unreal that I walked 3 miles on the treadmill a month ago and now I get short of breath walking to the kitchen. At this point my family and I need some time to discuss the options. Another transplant is being talked about but first has to be approved by the transplant team at MGH. They have done very few second transplants, due to both ethical and health reasons. Right now I am taking it day by day, relaxing at my mom;s house, visiting with friends and family, and continuing to keep eating and eating. Leah and my Mom know more about the actual name of the rejection (BOS) and its etiology, so hopefully they will write tomorrow.
I do read my email daily, so if you would like to send me a note…. amber.zoe@comcast.net or write a well wish feel free, I love hearing from everyone!
Love Always,
Amber

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Unfortunate News

I am not sure how Amber would want me to present any of this news to you, but I guess it’s kind of like ripping off a band-aid. Amber’s doctor’s appointment on Wednesday was not one of the more positive visits she has had. Through process of elmination the doctors have determined that Amber is experiencing chronic rejection. In this situation there isn’t much the doctor’s can do to help her health. At this point another transplant seems to be the next step. I know that this sounds scary and discouaging. There are still a lot of unknowns before they make a final decission. Please know that Amber appreciates your calls but isn’t up to talking much right now. Her shortness of breath makes it hard for her to have long conversations. This site is a great way to communicate with her. She will be writing an update shortly. Please take care of yourselves,
Love Mackenzie

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Bitter Sweet Discharge

This afternoon I am being discharged. I am excited to go home, but at the same time a little ambivalent. I had PFTs this morning and they were not improved– lower at 27%. The docs tell me “not to be so worried about the numbers but to base it on how I feel. For now to just go home, relax, and walk. In time the numbers should bounce back up.” As I said I am off all IV meds but on several oral antibiotics. I have an appointment with Dr. Ginns on Wednesday and repeat PFTs. Cross your fingers that miracles work within the next few days! I will be a Mom’s house if anyone needs to contact me.
Love,
Amber

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Wednesday Night at MG

Now all is quite here at the good ole’ MGH. Company has left and I now have time to return emails and write this update. Stuffed from all the food people have been briging or sending in (thank you!). The good news…..I am feeeling much better. The SOB is subsiding slowly, walking a little farther each day. The doctors have cut all my IV meds, so I am on three PO meds. I have PFTs tomorrow morning, not expecting them to be much higher than last week, but a 5% increase would be better than nothing. My CT scan showed improvement from last week– less shadowing. So….I may be discharged tomorrow night or Friday morning. Probably going to Mom and Rick’s for the weekend, (my Aunt Cathy is coming up from Philly), to relax and regain some strength. It looks like TIME is the remaining factor here. Nothing more then “waiting” and “exercising” is going to increase my lung function.
I’ll keep updating, the home page too. No news is good news!
Love,
Amber

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Update From Mass General

I am finally up to writing an update. It has been a long and rough three weeks. I know Mackenzie and Leah have sent out emails so you have some idea what is going on…..and don’t worry thats about as much as I know too. There are few answers about what is actually wrong with me and causing SOB (shortness of breath). There is a bit of rejection, and they saw a small infection on one of the many labs they drew, but nothing so significant to drop my lung function down to 30%. They were going to do a video assisted thoracotomy (biopsy) last week but that was cancelled last minute due to a tiny improvement in my last chest x-ray. So I just sit around, wait for doctors, they tell me time, so I wait more. I had another CT scan last night and still waiting for the results of that. Infectious Disease will come talk to me soon about the antibiotics (6 of them) I am on and how long they need to continue. Maybe looking at an end of the week discharge if all goes well with no more bumps in the road. I am up and out of bed a few times a day– walking is hard I get real SOB, but my oxygen saturation remains in the mid 90th percentile which is a good sign. My sprits are back up and eating alot once again, guess we all know that means I am feeling better!
Love,
Amber

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Email From Leah

Hi Everyone,

Mackenzie forgot to mention that Amber did not get the surgery as planned yesterday. After waiting all day, without food or water, her doctor came in her room around 8pm to tell her that her x-ray looked better than her previous one, and that they did not want to risk doing the procedure if she was getting better. The downfall to that is that now we don’t know what exactly is causing her shortness of breath, so she will remain on all of her current IV meds. I spoke with Amber today and she is feeling a little better…just a little, but hey, we’ll take it.

Hope all is well with everyone.

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Email From Mackenzie

Got this from Mackenzie today.

Hi Everyone- Amber wanted me to send a quick email to give you an update on things. She is currently in Mass General due to a shortness in breath and decrease in lung function. The doctors are having a little trouble figuring out what is causing her condition so they are going to perform a biopsy on her lungs later tonight. Hopefully this will give some insight as to the cause of her troubles and allow the doctors to treat them properly. Amber thanks all of you for your phones calls and emails. Unfortunately she just doesn’t have the energy to talk to everyone right now. It’s been a rough couple of weeks for her. It’s very discouraging not to have the answers she is looking for. Please know that she knows you are sending well wishes and is very appreciative. I will write more when we have updates.

Love, Mackenzie

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February 2006

It has been almost ten weeks now since I got the “call of my life.” I must admit I never in a million years thought I would have come this far so quickly. The doctors, my family, and other transplant patients are stunned when I tell them I was in and out of Mass General Hospital in twenty-seven days! It truly is amazing to breathe! At first I didn’t notice much difference, even though my total lung volume was increasing, it was still hard to take a deep breath. Now I can complete everyday activities without even realizing how much oxygen I am using, as before I couldn’t carry in a load of groceries without getting short of breath and taking a rest. I have begun an exercise program and pushed myself to even run a bit, something I haven’t done since junior high!

Where to go from here? Angels for Amber would like to use this website as a tool for education, information, and contacts for patients and families looking into live organ donation. Also to learn to fundraise and use the community as a resource for activism, promoting “the gift of life.”

Your support is very much appreciated!

With Love,

Amber

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Minor Setback, Not My Lungs

Originally posted by Amber on 2/15/2006 at 8:07:58 PM

On Sunday morning I woke up with a headache and a mild fever. About an hour later I started to get severe chest pains, curling up in the fetal position for comfort. Of course, it was the middle of a Nor’easter (about 12″ at that point) here in New England so Leah got in her SUV and trekked over to Waltham to scoop me up along with Mackenzie and take me to the ER at Mass General. We waited there for almost 12 hours, having blood work, an x-ray, and CT scan. Meanwhile continuing with the chills and leg pains. By 11PM all the doctors could tell me was that I didn’t have the flu. They wanted to keep me over night, so they sent me to the transplant floor The next day my blood panel came back positive for E. Coli. It was in the bloodstream and not in the abdominal tract so it wasn’t from something I ate. After cultures from my chest port they found that to be the culprit. I had a minor surgery Monday to remove the port completely and they started me on a 10-day course of IV antibiotics through a peripheral IV line. I was released today after no fever or pain for the past 48 hours. Feeling back to normal and my luungs are still working great!

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Rommies Again For Now

I hope everyone has been enjoying the first week of 2006. I have found the start of the year to be more rewarding that any year past. Of course, I attribute this to Amber’s success in her healing process. I am staying with her at her house in Waltham this week. Steve is visiting the West coast. I was delighted to regain my title as roomate once again – as Amber and I lived together for four years during college. I am constantly amazed at her strength and endurance. I think she feels that I am being super paranoid with my “better safe than sorry” attitude. She has been running errands, organizing her house, and regaining control of her lifestyle – in true Amber fashion. I came home from work tonight to find her preparing dinner for the two of us. I am not sure who is taking care of who here. She continues to gain stamina and motivation each day and I am so content when I watch her breathe. She is trying to discover how to breathe from her diaphram – she doesn’t realize how deeply she breathes when she sleeps- it’s so facinating to watch. Unfortunately Leah will have her turn at surgery on Thursday when she has her gallbladder removed. She is planning to recuperate here at Amber’s house. Payback time for Amber! Love, Mackenzie

Mackenzie

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Home In Waltham

Today I am exactly eight weeks out! Feeling better than ever. I am home to my newly “remodeled” apartment, driving, and back to doing my daily shopping excursions. Still wearing a mask in crowded public places and avoiding children, even though I miss the kids I sit for dearly. I have another doctor’s apontment tomorrow, same routine. Wednesdays are lung days so I meet other post-transplant patients. recently I meet a girl a few years younger who was intubated in the SICU for 11 weeks, and another woman who spent nine months in the hospital, both with CF, so I feel pretty lucky!

Dottie O’Connor is coming over tomorrwow to start a fitness program with me. Dottie had a lung transplant 11 years ago and a kidney transplant 3 years ago. She is a pesonal trainer and competes in fitness competitions and the transplant games. If you have time to check out her website she is very inspirational(wwws.dottielessard-oconnor.com). Hopefully she can motivate me, and maybe soon I will be running 5K’s with her.

My mom went home yesterday for a couple of days of rest before heading back to work when she had to take my sister to the ER. Once again she was having severe stomach pains. Now Leah is scheduled to have surgery on Thursday to remove her gallbladder. It’s one after another!

Warmly,
Amber

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Breathing Easy

It seems silly but these days seem to fly by. Each day my mom and I try to get our for lunch and errands or shopping, and each day I last a little longer. On a few occasions I have even worn her out and she had to tell me it was time to go home. On Thursday she took me to my apartment in Waltham and I saw all the work Steve, my friends and my family have put into making it a more comfortable environment for recovery. My room has been painted along with furniture to match, a new bed, and a flat screeen TV. I am so excited to get home and “start over.” I am planning on going back next Thursday the 20th. Although I truly appreciate all that my mother has done to help me recuperate so quickly.

Medically, things are still going great! My appointment this week was with another pulmonologist, Dr. O’Donnell. My x-ray and blood work were normal. My PFT’s were 55%, steadily improving, but ahead of schedule. I will probably have another bronchoscopy in a few weeks to biopsy the new tissue to insure no rejection or infection. I have however been having pain in my chest/upper stomach during the night. We are not sure if it is acid reflux or inflammation of the gallstones I have. I am going to have an ultrasound of my gallbladder on Wednesday. The odd thing is that my sister went to the ER last week with the same pain and she was diagnosed with gallstones too. We may have to get our gallbladders out together. Coincidence? No one on either side of our family has them.

I am still receiving cards and well wishes. Thank you for your support. I am using all your postive energy to heal.

With Love,
Amber

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Stronger By The Day

I am progressing to recovery quite quickly as I mentioned before. The doctors have already cut my twice-weekly apointments down to once a week, on Wednesdays, although it is still a long day at Mass General with blood work, x-ray, PFT’s (breathing tests) and the transplant doctor, plus any other approintments (endocrine, eye, etc). This past week at the Docs they nixed some more of my meds, but added a new anti-rejection medication. In the latest test my PFT’s were 54% of lung capactiy (compared to 19% pre-transplant). Plus, the bronchoscosp I had on December 23rd still shows so sign of rejection or infection. I am averaging about 22 pills a day, some of which are huge, and I have to wake up at 6am to take a few of them. I am only on one IV med now, probably a couple more weeks of that.

I am still in Marblehead where my mother has been so great taking care of me and trying to stuff my face with all my favorite foods. I’ve gained a few pounds but the steroids have started to make my face a bit puffy. My mom said this morning I looked like a “pumpkin,” I do however have the pink back in my face. I am looking forward to going home to Waltham the next week or so. The renovations are completed on my apartment and clear of mold, so it should be safe. Plus I think Steve is starting to miss me!!!

Everyday I am getting stronger, trying to get out of the house, to dinner, store, whatever for exercise. My legs are still quite weak. Sometimes I just fall over–my balance is a little off. Think it might be a while before I am driving again!

One thing that has been frustrating is keeping my blood sugar under control. They are normal in the morning (between 80-120) but by the evening they are in the high 200 and 300’s. I am taking long lasting insulin in the morning and Novolog on a sliding scale before I eat but find it difficult because I am always eating. As the steroids decrease hopefully the sugars will too.

As for now though, I am quite comfortable here in Marblehead. I don’t have any pain, my incision is almost comletely healed, my spirits are up, and I am gaining strength daily. People have been visiting from near and far, including my aunt and uncle from Seattle and my childhood friend Deidre from Oregon. I can’t wait to see you all soon. I miss everyone. Thank you for all the well wishes, thoughts, cards, prayers, food, and gifts. Your support truly means the world to my family and I.

I’ll write about my experiences soon. I had some good and NOT so good times between the surgery itself, SICU, transplant rehab, and then my early discharge, but it’s all a lot to try to recap right now.

Love,
Amber

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Happy New Year

Hi everyone and Happy New year from Diedre!
It certainly is a happy one here in Marblehead! I’m at Laurie’s visiting Amber and it is so wonderful!! The last time I saw Amber, it was just a week after the transplant when Alli and I made the trip from Oregon and Amber was still intubated and ventilated in the ICU at Mass General. At that point she looked so fragile – such a fighter but still so vulnerable. What an amazing difference a month makes! She is now well on her way and, in classic Amber fashion, is even ahead of schedule! ( I think for her, sometimes strength outweighs patience:) Though she is still regaining her strength and her treatment regimen is extensive, she is definitely back to being herself. To be here and see how well she is, how pink her cheeks are and to see how much life and strength she has in her, it’s hard to even think of the trauma her little body has been through so recently. We actually spent most of the day out and about yesterday, which was a first, and we went out for dinner last night with Leah. For today though, we’ve just been taking it easy here, reading, lying around in front of the fire and talking: In part, catching her up on the past weeks but mostly talking about the present and plans for the future. For me, it’s just so incredibly exciting that I can hardly stand it. I know that I bring with me here the wishes and blessings of so many people and I have been passing them on!
Much Love,
Dee

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She Is Out!

Hi all. I just finished speaking with Amber and Laurie and wanted everyone to know that Amber has been released from MGH and is now residing at her mom’s house in Marblehead. It is truly a very Merry Christmas for Amber, her family, and all of those who love Amber. You can hear the excitement and joy in Laurie’s voice when I spoke with her. The big move from MGH wore her out – hopefully she will sleep long and hard tonight.

Amber and Steve’s house is dismantled while a new bathroom is being installed. Thus it was in no condition for them to go to tonight. Amber was released far sooneer thatn we had guessed – we have lots to do to get her house ready for her return. She is still on IV meds so it is probably best that she stay with her mom for now. She should be there at least through next weekend. Amber will be visiting MGH two or three times weekly for a bit. The doctors want to keep a close watch on her progress. I am heading to Laurie’s on Manday and can’t wait to see her back in a familiar environment.

Amber is so touched by all of you who have sent your prayers and good wishes. The doctors are amazed by her rate of recovery – I can’t help but think everyone’s love and support has helped her in the process. Amber, her family, and myself send all of you and your families the best wishes for the holiday season. Love- Mackenzie

MacKenzie

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Home For Christmas

We couldn’t believe it when Dr. Ginns came into Amber’s room today and said that Dr. Wain was so impressed today with her bronchoscopy, done this morning, that she could go home! He said that Amber is way ahead of the usual healing process. The home health care team spent the better part of the day to make this happen with such short notice, given it’s Christmas weekend! She is still weak, but getting stronger every day walking and lifting little arm weights. Her appetite is back but her intake is restricted somewhat because a full stomach stretches her incision. She still tires easily…totally understandable! Her oxygen saturation remains 98% OFF O2, and her first pulmonary function tests were numbers we had not seen since she was a teen! The doctors say they will even improve with time. The best gift I have ever had is to sit beside Amber and watch her breathe while she is sleeping. The slow, deep, effortless rising and falling of the chest and her pink cheeks are visions I dared not dream of. And I hope YOU all have a very MERRY CHRISTMAS!!!! Love, Laurie.

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First Shower

Amber wanted to let everyone know that she took her 1st shower yesterday (45 minutes) and said it has never felt better! She seems back to her normal self, calling me several times a day, placing food orders with us to bring in when we visit and as always asking a million questions about THE PLAN! One of the nurses printed out several of these postings from the website for Amber to read and as she did tears started to flow. She couldn’t believe the responses and suppoprt she has received from everyone all over. I’m sure once she has computer access she will spread the appreciation herself. Dr. Wain visited Monday night and said Amber was doing great and pending any major setbacks she could be out to celebrate her 26th B-Day on the outside :)

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Next Phase of Recuperation

Today Amber is well on her way to the next phase of recuperation and will soon be located on the transplant floor where she will start regular physical and occupational therapy. Amber is very lucid now and is stable in all ways, although she is still weak. she has said some truly amusing and confounding things these past couple of days as she’s come out or her drug-induced state, but she’s had a great sense of humor about it when we repeat them back to her. It’s a good thing she comes from a family that teaches us to laugh at ourselves and each other. Amber is eating small meals and is able to get out of her bed, walk around the room and sit up in a chair for longer periods of time. Amber still will not be able to have visitors or receive any flowers or plants. If anyone wants to send her cards or letters, they can send mail to her home address. These updates will continue, but not on a daily basis, I am flying home today, back to the land of free parking, recycling and drive-up espresso. It is difficult to leave, but as has been true about this whole expereince, timing is everything. Today, Amber is ready to get more active and participating in her healing, to take back her power and control (as much as she can) and move to the next phase. I know that she will continue to be surrounded by wonderful people who care about her, and I have no doubt that she will find a way to express this to everyone, when the timing is right. Love to all. Susie

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She’s Amber

To all who love Amber: I am Amber’s aunt and I’ve known her for her entire life. It’s been my sincere pleasure to provide you with information about how Amber has been healing, and to some degree, try to relate to you what she’s experiencing. We’ve gotten wondeful feedback from many people who are following Ambers’s progress and count on these updates to keep filled in. We know how many people love her and are contributing to her healing through that love and caring. We are so thankful, in so many ways. Thankful for all of you, for the doctors, the nurses, the hospital, and for the incredible gift of these healthy lungs, from someone we know nothing about. This amazing gift has given Amber new life and breath, literally. When I tink about this, my throat constricts, my eyes tear and my heart aches. I suppose it’s a mixture of joy and sorrow, and relief. It’s something we’ve all felt several times over thses past days and weeks. I think, I can only imagine, that it’s a small part of what Amber is experiencing now. She’s awake, not totally with us on this plane yet, but very much wanting to grasp it all. She’s in a new phase. She’s emotional. She’s exhausted, afraid to sleep, she’s in control, choosing what she wants for her next meal she’s hallucinating, she’s tearful, she’s telling the doctor about her pain, she’s double checking with the nurses that it’s the correct medication, she wants to watch Law and Order, and she doesn’t, she’s grateful, she wants to know about all her messages, she wants to hear stories, she wants to be alone, she doesn’t want to be alone. She has someone else’s lungs and she can’t feel them. She’s coughing and there’s nothning coming up. She’s happy, she’s sad, she’s awake, she’s not. She’s beautiful. She’s Amber.

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Moving Forward

Amber continues to move forward on her healing path. She is off the sedation medication completely and is more lucid than she’s been since surgery. The nurses insist that she get out of bed and into a sitting chair several times per day and she has to breathe into a spirometeer, which measures her lung strength. This will act as a guage for her lung function and measure her improvement over the next weeks. Amber is still very weak, any movement dips into her small reserve of energy. Her voise is getting stronger and we don’t have to lean forward to hear what she’s saying. Her next several days will consist of getting out of bed, gaining strength and shedding the stomach feeding tube and other tubes. She still needs to stay in the controlled environment room and her visits are very limited, as the doctors do not want her to be exposed to additional risk of germs. Amber said this morning that she is boored… we consider that a good sign and an indication of her getting back to normal. Personally, I can’t imagine being boored following a double lung transplant, but, that’s Amber. She doesn’t remember anything before yesterday, which is good for her, since she’s been through more trauma than most of us could imagine. Her emotional state now needs to catch up with what her body has experienced. This is a natual part of her healing process and is as important as her physical recovery. Her doctors and nurses are taking great care of her, but love and time will be her constant angels.

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Breathing On Her Own

Amber had her breathing tube taken out this morning and she’s breathing on her own, with her new lungs

Today will be an anniversary for her and we will remember it, vividly. We have been excitedly awaiting this day, knowing that now she can proceed more rapidly with her recuperation. She is doing really well, her lungs are working just fine, she can finally roll over on her side. Her restraints are gone. Her last 2 chect tubes will most likely be removed today and her nurses are going to get her out of bed and up into a chair today. She didn’t sleep much at all last night in anticipation of getting the tube out today and because her sedation has been greatly reduced. Amber is still weak and somewhat confused and disoriented, but that will clear up with time. She will continue to gradually gain strength and shed more of her tubes and monitors. Amber will now need to get to work with her respiratory exercises, working on her prodective coughing(pulmonary toileting), which will work more efficeintly and be a new sensation with her new lungs. She will also need to learn how to take deep breaths and not just depend on her accessory muscles to breath. She has been taking shallow breaths for so long that she has gotten used to using her upper back and shoulder muscles for breathing instead of fully expanding her ribcage. She will now be able to sit up straight and breathe from deep within and not have it cause a coughing attack. She will be able to laugh unhaltingly. She will have many more capabilities that remain to be discovered. There are so many questions that Amber will eventually be able to answer for us. I
am sure everyone is wondering, what does it feel like to breath with your new lungs? Only she knows the answer and can describe her experiences – when she’s ready and able. It’s a miracle. Thanks be

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Breathing Tube Out?

Hello everyone, Amber is doing really well, considering that she is still intubated, sedated and in the ICU. She is quite weak and still goes from being “awake” with her eyes open to asleep the next minute. All her vitals are great – she has less secretions, her temperature has been normal, her kidneys are processing the anti-rejectin drugs well and her lungs are doing a great job breathing!Yesterday we waited almost 10 hours in anticipation of her being extubated (breathing tube removed), which will be a big step forward. Some of you were waiting too, for the update. When there is no update, it doesn’t mean that something is wrong. It just means that either we are waiting for information or nothing has changed. We have gotten lots of great feedback concerning these updates and we’re glad that so many people are following what’s happening with Amber. Your concern and care is a huge part of her healing and she is reminded each day that many people are thinking about her. We didn’t get word that extubation wasn’t going to happen until late yesterday because the surgeons were delayed in the OR (operating room). We are hoping that Amber will get her breathing tube out today, but we can’t really count on anything definite, until it happens. After extubation, Amber will start to receive less sedation and pain medication and will start to really wake up. She will have to start exercising her lungs more (very slowly) and be able to start getting out of bed a little bit. She will still be in the SICU for a while until she’s ready to go on the the next phase of recuperation which is to the transplant floor. Laurie and I went up to visit the floor this morning and talked to the charge nurse. It’s a great unit with a very positive ambiance and will be more like a recovery and rehab unit for Amber. Amber will be visited each day by her nurse, and physical and occupational therapists, who will train her about her meds and other various things she’ll have to know about the post-transplant. We will keep you posted as to new developments.

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Waking Up

Over the past several days, Amber’s “waking up” has been a difficult process. The nurses work to find a balance with the medication to allow her to be up, yet not aggitated. Since she is not yet ready to have her breathing tube removed, her awake times are very uncomfortable. Her medications also make her disoriented. We know that Amber is a person who likes to be in control and having all control taken away is a psychological aspect that contributes to her aggitation. Although she is moving close towards extubation each day, we are all awaiting for her healing to reach that next big milestone. Amber’s breathing functions are getting stronger, yet she is still producing secretions that need to be removed by the doctors. She has a new infection that is most llikely caused by bacrteria that was already in her body before transplant. Having the tube in makes it easier for the doctors to bronc (bronchoscopy) her and suction them out. Amber isn’t able to cough those secretions up herself yet since the nerve innervation to her new lungs is still in repair. Those of us who have experienced surgery know that nerve damage (interruption) is commonly a result of being cut into. This will repair, to some degree, with time, although we don’t know how much she will be able to feel her new lungs. Amber remains stable and continues to gain strength, although her moving about it bed also exhausts her. When she is “awake”, she is conscious of the breating tube in her throat and craftily tries to maximize her new sitting position by leaning forward towards her restrained hand, hoping to get her fingers around the tube. She is watched very closely, however, and never gets very close to accomplishing her desired goal- to rip that sucker out! After a few days of extreme aggitation, the doctors gave permission for short visits in her room. Laurie, Leah, Fred, and Steve have all been albe to be next to Amber’s side. Her response had been varied, depending on her state of awakeness. She acknowledged that she doesn’t like disapproval! We want to encourage that fiestiness of hers, even under strong sedation. On the more nurturing side, they were able to rub lotion on her neck, untie her restraints for a short while and move her arms around, tickle her arms, and reassure her how loved and cared about she is. Amber has many angels looking over her.

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ICU Psychosis

The nurses said that Amber was awake much of the night last night. Today she is rather tired and seems to be in a state of what’s called “ICU psychosis”. It is normal for someone to be disoriented when they’ve been on narcotics and their sense of day and night, or time, is confused. Dr Waine said that most people don’t remember much, if anything, from this phase of their hospitalization. Permission was given by the docrtors for Laurie, Fred, Leah, and Steve to “gown up” an go into Amber’s room for 10 minutes a day (I’m not going in becaause I don’t want to take my wheelchair in her room). We hope this will help to calm and comfort her during these days before she’s extubated. She has been very restless and uncomfortable, trying to get at her tubes, when possible. She is able to be put into a sitting position, now, which makes it a bit more comfortable in the bed. They took another chest drain tube out, so now only 2 remain. Her breathing volumes look good and she seems to be adjusting to less suport from the ventilator. As I’ve said before, the doctors really like to make changes slowly, and so for the weekend she will continue to sit up more, breathe with less ventilator support and remain awake as much as possible. It is truly amaziing how the body works in everything. Amber’s red blood cell count was down and is being monitored by a hematologist, her kidneys are being watched due to possible effects of the anti-rejection drugs, and of course, the pulmonary doctors monitor the function of her new lungs. The surgical doctors are her main doctors now and are seeing her daily. The transplant and CF doctors are also part of Amber’s care team. Antibiotics and sedatives are all necessary for Amber right now, so those have to be monitored and their possible side effects. Amber has extra fluid in the body and looks a bit puffy right now, but she continues to be progressing really well. Love to all, Susie

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Ventilator Turned Down

Today, Friday, Amber is sleeping and resting on and off. Her ventilator settings have been turned down today and the doctors will be watching how her new lungs respond to having less resistance support. As the ventilator settings keep getting adjusted down and it supplies less and less support, she will eventually be breathing under the same conditions as you and I. Her ability to do this adequately will be a requirement, in order for Amber to be ready to be extubated and finally breathing on her own, with her new lungs. In the meantime, medications have to be balanced and adjusted and her body continues to need time for rest and regaining strength. She is doing well, but as the doctors have said, she’s not yet “out of the woods”. As of today, her visits are being limited to less time and less people. She continues to be uncomfortable during much or her waking time and has requested less visitors. You can send your love and best wishes to Amber through the website and with your thoughts and prayers. We are all an important part of Amber’s healing and we all have to realize that her recuperation time is going to be a long time, and will go through different phases. Also, her needs will change along the way. We can be encouraged about how Amber is healing, but it’s a dificult time for her, and us. We will keep everyone informed when changes occur and as to how she’s doing, as best possible.

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Nine Days Later

It’s amazing to see the progress Amber has made in the last week. last Thursday wew were begging to see her baby blues open- now we can’t get her to stay asleep for more than a couple of hours at a time. As Susie has said, the chest tubes are coming out gradually. hopefully this will ease some of Amber’s discomfort. She gerts very frustrated with the position she’s in and is desperately wanting to roll on her side and have that tube removed from her mouth. It’s hard to watch her struggle with the healing process- but in the long run we all know how worth it it is. Last night she was waving to myself and Steve, trying to get us to come in the room. It’s hard not to be able to hold her hand and try to provide her with some sort of comfort. Hopefully that will change soon. I visited the hospital again today and she was very alert. We have been wtiting on a message board and she can read it clearly, She rolled her eyes at some of my messages- typical Amber, so I am sure she understands what we write to her. Laurie, Fred, Leah, and Steve are all holding up well. I am so proud of their strength. Aunt Susie has been a blessing to have here. It’s so nice to have family and friends around you. For the most part the spirits are positive and light-hearted. Thanks so much for all of the well wishes. It is so appreciated by myself and Amber’s family. If you need to contact me my cell number, correctly this time, is 617-818-2191.
Love Mackenzie

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Her Eyes Are Open

Hi everyone, today Amber is the most awake that she’s been since surgery. her eyes are open, she is communicating more with her nurses and she is still very uncomfortable with the breathing tube and her position in bed. It’s a positive thing that she’s more cognizant, though she will probably remember this stage of recovery with unpleasant thoughts. At times, she has motioned for us to come into her troom to be with her, but of course, we are powerless to respond to her request Everyone, Amber most of all, is looking forward to when she can come off the ventilator. The doctors still want to make changes slowly, and with caution, which is understandable. They have removed more of the chest tube drains and Amber is down to 3 drains (she started with 6). Her white blood cell count is down and her temperature is down. The Doctors feel that the infection is under control, at this point, and her body is making progress fighting it. They are still suctioning her lungs two times a day and report that her secretion production is down. This is all great news. They are also slowly cutting back on the ventilator support and are watching how she reacts. Although Amber is moving in the right direction with her healing, her immediate attention is set on her uncomfortableness and she is excercising and incredible amount of restrain and reserve in order to cope with her present situation. All that to say, she’s one brave and tough cookie.

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Her Signs Are Good

Today Amber remains in stable condition. Her signs are good, she is breathing with minimal help from the ventilator and she moves in and out of various stages of awakeness. The doctors removed 2 of her chest drain tubes, but there are no other changes planned for now, that we know of. The nurses use a communication system with Amber by asking her yes and no questions. She responds by nodding or shaking her head, and applies emphasis with her facial expressions and eye movements, as needed. Last night she didn’t want to sleep much and was awake quite a bit. It seemed she wanted to watch a bit of TV (Law & Order), but as it turned out, she wasn’t quite ready for it. She communicates that she is not in pain, but she’s obviously very uncomfortable in her lying position and with the berathing tube still in her throat. Anyone who had their arms restrained and has to lay in the same basic position for days would feel the same way (not to mention having your lungs removed and replaced). Amber is tolerating it better than yesterday but will need to endure it further. We really feel fortunate that Amber is in the hospital for a very positive reason- to prolong and improve her life. There are many people here who have experienced trauma and great loss, life and death as well as permanent injury especially in the SICU (surgical Intensive Care Unit). We are seeing them every day, speaking with their families, and watching what they are going through. When you have a chance to comfort, of just listen to a person who is grieving or in distress, it’s a very touching and intimate moment. We talk about Amber and explain her situation, too. People are interested to learn about Amber’s transplant and about organ donation. It really feels like a miracle has been done. They can see that many people care about her. Amber has already done so much to help us all understand more about cystic fibrosis, but more importantly, she continues to teach us about tenacity, faith, love, compassion, and the profound gift of giving and receiving.

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We Love You

Today Amber continues to float between sedation and awakeness. It is in her best interest to spend more and more time awake, however, it is very uncomfortable for Amber. She has been lying basically in the same position since her surgery so she is sure to feel stiffness and discomfort. The breathing tube in the throat cuses discomfort as well as the 6 drain tubes from her chest that remove the extra fluid caused from the surgery. We are hoping that some of the tubes can be removed soon which will help her comfort level a bit. The nurses talk to Amber when she’s awake and reassure her that she’s doing well and that her family and friends are here. Occasionally she is awake enough to look over towards us, for a moment. We put a big sign on her glass door facing her that says WE LOVE YOU. It’s hard not to be able to go in and be with her, and it will still be some time before anyone except nurses and doctors are allowed to enter her room. Amber has a small infection in the lower left lobe and the doctors are watching and treating it. She continues to have secretions that make her cough so she is being suctioned twice a day. Dr. Waine explained that Amber is still not strong enough to do it on her own. The ventilator is still needed until Amber’s breating function is working better. This is not unusual in thansplant patients but part of the process that takes some time. The new lungs are working well and exchanging the gases efficiently, which is very good , and all of the vitals continue to be good. One of us is most always at the room, watching from outside the glass doors (as close as we can get), or in the waiting room when we’re asked to leave. because of a procedure. There continues to be so much love expressed for Amber and for her family and friends. Thank you all. Please send Amber a special boost of love and comfort during this difficult window of her healing. We know it helps.

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We Will Remember For Her

Amber continues to do well with her recovery. Her tidal volemes have improved, her oxygen saturation is good and her pulmonary artery pressure is stable. The doctors were able to remove a line that was monitoring this pressure, which is a good sign. Each monitor and line she is able to shed moves her closer to the time she’ll be able to be awakened and breathing on her own. They will continue to slowly decrease the number of breaths the ventilator supplies and her new lungs will eventually do all the breathing. The ventilator also gives her lungs support by reducing the resistance from the breating tube. We have all taken note that her chest moves deeply up and down, a marked difference from her swift shallow breaths before the transplant. Amber has been experiencing some pain when she has those moments of vague awakeness. When we see her eyes open we try not to jump up, wave our arms, and shout “I love you” or anything so she’ll know we’re there. That attracts a lot of unwanted attention in the SICU and the nurses don’t like Amber getting excited. She really tries to respond, lifting her little restrained arms to wave back. Just that much movement seems to exhaust her after which her eyes roll back and she resumes her drug-induced restful state. We know this is where she needs to be right now, even though it’s hard to be on the other side of a glass barrier, waiting and watching. She has also been coughing some due to secretions from surgery but these are taken care of by a suctioning process. The doctors and nurses want the changes to happen slowly and they make small adjustments daily to move her forward. They have started giving here a small amount of nutrition in liquid form which is the first thing she’s had since last Tuesday. We know Amber doesn’t like to miss a meal so it’s probably a good thing she most likely won’t remember much, if anything, about this time period. Amber’s friend Sarah, who had a lung transplant, was in an inducred coma for 3 weeks and her mother said she didn’t remember anything about it. We will remember for her.

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The Lion Sleeps Tonight

“The lion sleeps tonight”, and today. The nurses have had to give Amber mega doses of sedatives to keep her down. They are amazed at her levels, given her small body mass. As a child, she hated having to go to sleep. Her parents tell a story about how one night she cried and kicked in her crib very unhappy about being put to bed. The ruckus was so loud, when they went to check on her, they found that the commotion had move the crib all the way across the room! Such a warrior! As an adult, she doesn’t like missing out on anything. Amber will be so happy to have all these messages to fill her in on what’s been happening these past days and to know that all of you are sending her love and support along the way.

Is is sometimes difficult not to be able to talk to Amber or hold her hand, 0r verbally pass on everyone’s well wishes. We’re only able to watch Amber sleeping from behind the glass doors. It gives ICU a double meaning. We continue to be very pleaased with and thankful for how she’s progressing. Amber’s coughing has subsided due to the suctioning yesterday. She had been running a slight fever but it is back down today. The doctors have changed some of the antibiotics as they want to be sure to cover all the different bacteria that has been growing in her native lungs. Since she is immunosupressed, she is susceptible to infection. The transplant pulmonary doctors and the transplant infectious disease doctors work as a team with the surgeons to decide on her treatment and medications. She is in such competent hands and we have great trust in her team. They will be looking for her tidal volume (the amount of air breathed in) to increase over the next days and for her to continue to rest comfortable as her body heals, We love you Amber.

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Vulnerable State

Today Amber is sleeping restfully due to the heavy doses of sedatives she’s being given. Is is still important for her to remain in this induced coma, (as we like to call it, sleeping) state and will be so for a couple more days. We patiently await the time for her to be extubated (remove the breathing tube) and for her to regain consciousness. She has had some slight coughing bouts which are caused by secretions although it’s nothing that the doctors are concerned about. In fact, it’s expected. Today the doctors will be doing a broncoscopy to look into her lungs and to check the condition of the sutures and to suction out any secretions When her sedation level lightens up, she starts to “wake up” and her reflex to cough is intact. She sometimes tries to sit up, but she is restricted. Her arms are restrained so that she won’t try to pull out her breathing tube. Amber is in a vulnerable state right now, yet she continues to have very good vital signs and shows wonderful progress. She is on some 20 different medications which are continually monitored and adjusted. Amber will need to remain in a contrtolled environment for several weeks, yet. She’s basically
in the bubble so that she isn’t exposed to germs or infection. When it comes time for her to go home, it’s expected that it will be 4-6 months for her recovery, when she will still have many restrictions, including contact with people, animals, plants, and some foods. Many people have expressed their love for Amber and their interest in keeping updated. Thank you for all the support, it really matters. I will continue to write these daily updates and report any new changes in Amber’s condition as she progresses. We love you. Susie (aka Aunt Susie) ps- please feel free to reply or ask questions

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Messages, Thoughts & Prayers

Hello everyone! This is my first chance to visit this incredible forum that Scott had provided us all with to keep in touch. Thank you so much Scott!!! Also thanks to Mackenzie and my sister Susie for their efforts to keep you all abreast of what’s going on here at the hospital.

I want to thank you ALL for the wonderful messages, thoughts, prayers and energy given to our family and especially to Amber, She is doing amazingly well so far;;way ahead of the norm. We understand that she received a very healthy set of lungs luckily. That has been stressed, so I can’t help but think it may have been an unusual circumstance,,,lucky beyond out hopes maybe. This is such a precious gift, and we realize it is at the expense of someone’s profound loss.

We hope the family will know that their aultruism saved Amber’s live and find comfort in that. I cannot answer all the e-mails and phone calls right now, but please know that each one means so much and this is a snowball of positive energy here! There is still a very long road ahead, and it’s bound to be bumpy at times, But, hoepfully she’ll cruise right along, because Dr. Dorkin said today that Amber is a Ferrari now, not a Chevy. Much love to you all!!!! Laurie

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Vital Signs Are Holding Steady

Today Amber’s vital signs are holding steady and everyone is still impressed, relieved and amazed at how well she’s doing. She continues to try to wake up from the incredible amount of sedation she is under, but at this stage, she still needs to be kept asleep while the doctors slowly wean her off the ventilator, She is overbreathing the vent, in other words, her natural breathing reflexes are driving the process and her new lungs are trying to do the work they are meant to do. This is great, however, she still needs to have the support of the ventilator. The doctors wnat her to be awake but not anxious (before they can remove the breating tube and fully wake her up) which is a fine balance, given that she is hooked up to several machines, has lots of tubes and drains and monitors and a breathing tube down her throat. The instinct to bolt upright and try to “make things normal” is very strong and difficult to consciously overcome. Surrender is not a comfortable posture, especially to Amber who is such a fighter and strong individual. We know that this attribute will serve her well in her recovery process. So many people have shown their love and dedication to her. We have so much to be grateful for and are expecially feeling blessed for the gift of a healthy pair of lungs for Amber. We know that somewhere a family and circle of friends are grieving the loss of their love one. We can only hope that their grief will be assuaged from the knowledge that the lung donation is, in essence, the saving of another’s life.

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Continuing To Do Well

Amber is continuing to do well. She has been taken off her blood pressure medicine and is doing fine without it so far. The doctors are hoping to gradually reduce her reliability on the ventilator over the next couple of days. The nurse told Laurie that she woke up again during the night, even though the doctors increased the medicine to keep her asleep. Her nurse was in the room with her when she woke up. She asked if Amber was in pain and Amber shook her head. The nurse told Amber that she had received two beautiful lungs and Amber nodded. The nurse also told her the date and Amber seemed aware of it. It’s comforting to look at her sleeping. She seems so far away, deep in dreamland. It was truly an amazing feeling to see her open her eyes and acknowledge us looking at her. She’s covered in blankets but you can see her toes and fingers wriggling to communicate with us. If there is one thing Amber is, it’s a fighter. Thank you so much for the caring phone calls and messages. Her family greatly appreciates them. Amber is loved by so many and I am a believer that she gains energy from knowing that. I’ll update later. Love, Mackenzie

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Amber Remains Stable

Amber remains stable and well cared for in the Surgical Intensive Unit (SICU) at MGH. Her room is a positive pressure room designed to keep out germs since her immune system is suppressed in order to prevent rejection of the new lungs. We are able to watch her sleep from behind glass doors and send her all the positive energy and love we are feeling from all of you. She always has 2 nurses on duty taking care of her and they are great! Her doctors are also wonderful and very attentitive. Amber wants to wake up and has opened her eyes, mover her legs and hands, and responded to the nurses questions. She is aware that she has a new set of lungs and has indicated she’s not in pain. It seems she’d like to get out there to finish her Christmas shopping, which was one of her anxities about having the surgery sooner than expected! However, when she’s awake her pulmonary-artery pressure goes up which is an indication that her body is not yer ready to breathe on her own, without the help of the ventilator, which she will be slowly weaned off of during these next fer days. We are all in anticipation of her transitioning to breathing on her own and being awake and are eager to hear how she feels with her new lungs. She will have 5 times more lung capacity , going from 20% to 100% capacity and she will not longer have CF in her lungs. For now, though, she just needs to sleep and let her body adjust to the incredible transformation she has just experienced.We know you are thinking of her and that means a lot. Thank you again for all the love- it is truly incredible. She will not be able to have any visitors for some time so the website is a great way for communication. We will continue to give daily updates and keep everyone informed about Amber’s healing. She will not be able to receive flowers or plants as her environment will continue to be highly monitored. Your positive thoughts and well wishes are much appreciated, Love to all.

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