Please visit Dottie’s website: www.dottielessard.com

You may purchase this book through www.Amazon.com

1. Introduce myself

2. CF Facts
• CF is the 2nd most common inherited childhood onset diseases in the US.
• Approximately 30,000, w/ 1,000 new cases per year
• CF affects mostly Caucasians, and seen least in Asians
• 70% of patients are diagnosed by 2yrs of age, although I have two friends, one diagnosed at 17yrs old and another at 40 years of age
• What does cystic fibrosis do to the lungs?
People with cystic fibrosis have airway secretions that are drier, stickier, and harder to clear than normal secretions. This thick mucus can block the bronchial tubes in the lungs, and can lead to gradual blockage, infection, and lung damage. The thick, sticky mucus also can block tubes, or ducts, in your pancreas. As a result, the digestive enzymes that your pancreas makes can’t reach your small intestine. These enzymes help break down the food that you eat. Without them, your intestines can’t fully absorb fats and proteins. This can cause vitamin deficiency and malnutrition because nutrients leave your body unused. It also can cause bulky stools, intestinal gas, a swollen belly from severe constipation, and pain or discomfort.
• Prognosis: The median age for survival back in 1955 was 5, now it has risen to about 38 years of age
• RH Factors (symtomless): You must have 2 carriers or one with the disease itself: -25% chance will have CF -50% will carry the gene -25%- will have nothing
• The specific gene for CF was identified (through birth) in 1989. Since then doctors and researchers have been working on clinical trails to cure this disease. Inspire Pharmaceuticals in RTP, NC is in Phase 111 of two drugs to fight CF.
• www.CFF.org

3. Transplant Facts
• Kidneys are the most commonly needed organ
• Approximately 1700 lung transplants in 2009 (www.UNOS.com) compared to 1150 in 2004.
• Two donation types: cadaver and living donation
• Waitlist based on medical condition changed from wait-time on list in Spring of 2005
• Lung transplant needed for many diseases: CF, Pulmonary Fibrosis, COPD, Emphysema, Idiopathic Pulmonary Fibrosis, Primary Pulmonary Hypertension, and Alpha-1
• www.transplantliving.org

4. Share my story
5. Lung Transplant foundation www.luntrasnplantfoundation.org
• “Lungapalooza” September 19th 2-5pm @ Sarah Duke Gardens
6. Appointed questions from Dr. Scott Palmer
7. Questions from students

Monday April 26th, 2:00pm– Duke 1st year Medical Students
Duke University Durham, NC

May 16th-19th American Thoracic Society Conference, New Orleans
Lung Transplant Foundation Exhibit Booth

May 22nd 3:00pm– “The Gift of Life”
St. Peter’s Lutheran Afternoon Tea
Phoenixville, PA

September 19th 2:00-5:00pm– “Lungapalooza” First inaugural walk to benefit
The Lung Transplant Foundation (chairman of the event)
Sarah Duke Gardens Durham, NC

Message: There is not much information on the web about ICU
Psychosis. A week ago today, my dad underwent a double lung
transplant. He is doing well except for this psychosis. We as a family
feel helpless. We have not been allowed to go into his room, and we
can only watch him from a glass window. Please tell me this gets
better? I know it is probably harder on the family, but we don’t know
what to do. Are there any suggestions you can give?
Thank you,
Jacqueline

Dear Jacqueline,
ICU psychosis was not a topic talked about by the doctors, surgeons, or medical staff before transplant. It is something most patients suffer from after spending a few days in the ICU. I experienced this more during my first transplant (2005) as I spent 21 days in the unit behind glass, 17 of which was in a drug induced coma. The four days I was awake I thought everyday was Christmas. I watched the clock intently all day and night. Time was so slow. I couldn’t focus on the tv, and the last thing I wanted to do was interact with the people outside the glass. It was like a deep depression. I saw people (my old HS phys ed teacher) who weren’t really there. It was a lonely feeling. But, this all passes. At the time I was miserable but once I go to a medical floor, instantly I was better. I was able to sleep and the best part was I could talk and touch my visitors. This was the point where I knew I was going to live. Time passed by so quickly at that point.

Now after my second transplant, ICU psychosis was much different. I was only in the ICU for three days and not on contact precautions, there was no glass separating me for the rest of the world. since there were no windows I was very confused whether it was day or night. I then moved to a med/surg floor where my psychosis got worse. The pain meds mixed with antibiotics and lack of sleep made me hallucinate. I would fall asleep and then start talking and moving (directing traffic, talking to my god son, act like a composer) and then awake quickly with a jerk. I also got cabin fever as I spent 21 days in the hospital post-transplant. I was “climbing the walls.”

In 2001 my paternal grandparents were in a serious car accident. My grandfather was pronounced dead on the scene and my grandmother was transferred to the city hospital in serious condition. After a few days in ICU, we were able to visit her. She was hallucinating, often talking with my “grandfather’s angel.” She would talk about having coffee with them and them with her best china. All though she was in and out of psychosis, we agreed with her because telling her that no one was there would just anger her. We reminded her daily of where she was and what had happened. A soon she was medically sound, we got her out of the room asap. Just to walk around the until/hospital helped clear her mind and bring her back to reality. She spent over 60 days in the hospital. We brought her pictures of her grandkids and events that were taking place while she was inpatient. We kept her updated on the current news, and constantly reminded her of the date.

Things you can do to help: 1. Remind your dad of the date 2. Bring in pictures, cards, etc to remind him of his family and friends 3. Talk about current events and news 4. While he is behind glass, write big signs for him to read and maybe tape them to the door 4. Don’t have too many visitors, especially at one time (personally I felt like a was a zoo attraction) 5. Remind him of his medical goals and how close he is to reaching them, “it’s a big mountain but he is near the top.” 5. Just agree with things he may see or hear (this will soon pass)

All in time this whole transplant journey will seem like just another event in life. Although your father’s life decisions will always take his lung transplant into account, he will be able to live a healthier and happier life. Good luck! Hope this helps.

Sincerely,
Amber

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.

In 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.

You 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

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.~

~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.

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.~