Angels For Amber » Laurie

Amber’s Back At Home

Laurie — Tue, 17 Jul 2007 20:19:19 +0000

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.

Back To Boston

Laurie — Tue, 24 Apr 2007 17:53:44 +0000

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

Amber Is Doing Great!

Laurie — Fri, 09 Mar 2007 01:32:44 +0000

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

Hi Ya’ll

Laurie — Mon, 08 Jan 2007 00:15:40 +0000

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

Home For Christmas

Laurie — Sat, 24 Dec 2005 03:55:05 +0000

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.

Messages, Thoughts & Prayers

Laurie — Fri, 02 Dec 2005 19:47:59 +0000

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