Duke Transplant Friends

My story begins in the fall of 1996. My two oldest children were away at college and my youngest in his senior year of high school. I was working part time as a visiting nurse and my husband and I were looking forward to being "empty-nesters" with mixed feelings. In October I became sick with a "cold". I got more and more sick and finally was diagnosed with bilateral pneumonia. It took me a long time to feel good again but eventually I was back to my usual self.
In the fall of 1997 my husband and I were, in fact, alone with the last child off to college. We planned a weekend away and part way through the weekend I became VERY short of breath. When we returned home I saw my family physician and he told me I was overweight and out of shape and I needed to exercise. The exercise made my breathing worse and he sent me to a pulmonologist. After PFT's and a CAT scan he told me that I probably had something called idiopathic pulmonary fibrosis. He told me I would not live long and there were medications that MIGHT work. I left his office terrified. I prayed for strength and courage and then proceeded to cry for a few days. I wanted to see my children graduate, get married and have babies. I wanted time with my husband and to enjoy the days together until we were old. Part of me said I have had a wonderful life for 50 years and so many blessings....why not me? And the other part of me said I am not ready to die - I still have too many things to do.
I saw the pulmonologist again and decided I wanted a second opinion. I was so blessed to be seen by a pulmonologist at Duke for that second opinion. He and his nurse were truly a gift to my family. I had an open lung biopsy at Duke in Jan. 1999. I continued to receive my care there until my transplant. I live in Pennsylvania and drove (6 hours) to Duke every 3 months. The medication was working, I was less short of breath, I had a new job I loved. I saw 3 of my children graduate from college and 1 of them get married. My husband and I took several wonderful trips with friends and family. Life was good.
In the spring of 2004 I was very short of breath again and began wearing oxygen at night. My daughter and I were getting ready to take our "dream trip" together. I arranged for oxygen in my room in France, the pulmonologist increased my prednisone so I could walk around Paris with less trouble breathing. The trip was a dream come true. Little did I know in 11 months I would be on the transplant list waiting for lungs!
I was very overweight during those years leading up to the transplant. I had lost a significant amount of weight (60 lbs.) but still needed to lose about 20 more. I met with the transplant team at Duke in March and they told me they would not do the transplant until I lost the rest of the weight. This was one of the most discouraging and frustrating aspects pre transplant. The doctors at Duke would not give me a diet or help of any kind with the weight loss. I was on steroids and wearing 6L of oxygen. They told me just do whatever you have been doing to lose the rest. I had all of the other tests and they accepted me for transplant but would not list me until I lost the weight.
In April 2005 I moved to Durham so I could go to the Center for Living to exercise and hopefully lose the rest of the weight. It was the best of times and the worst of times. The exercise was grueling but they just kept increasing my oxygen so I could participate. So hard. The best part was being with the people at the Center for Living. The staff is passionate about their work and the patients reap the benefits! Spending time with other lung transplant patients is such a blessing. We became each others help mates, family, friends, confidants and much more.
My husband spent most of my early days in Durham back home in Pa. at work. I had many friends who came to stay with me. By the end of May he came to stay and we knew we were facing the end or the beginning. I was so sick that doing anything took enormous effort. I was using 8L of oxygen at rest. I lost the rest of the weight and the 3rd week in May I was "activated." My husband and I knew this would all take place in God's time. We held that thought but waiting was so difficult. With every phone call........
The second week of June I had a regular clinic visit and the pulmonologist told us he wasn't sure I would live long enough to receive lungs. We went back to the apartment and spent a quiet and sad afternoon.
Three days later, at 3 am Sunday morning the phone rang and the coordinator said "There is only one reason I would call you at 3 o'clock in the morning. We have gone to look at some lungs for you. You need to come to the hospital." At that point I was very calm. This was indeed God's time. I was admitted to the hospital, had a chest x-ray, blood work, an IV started and a dose of anti-rejection medicine. My husband and I played cards and talked about what we would do if the lungs weren't good or wouldn't fit. At 11:30 we received a call from the coordinator that the surgery was a "go". I was in the OR 30 minutes later.
Of course I don't remember the 1st 24 hrs. I do know that they took me for a short walk on Mon. afternoon with no oxygen!! AMAZING!!! I spent a week in ICU and a week in the step down unit. The hospitalization was hard for me but I was discharged June 28, 2005 and have never been back. I remained in Durham for 6 more weeks...seeing the doctor every week and going to the Center for Living every day. I left Durham the 3rd week of August. When we got home there were balloons on the mailbox and a "Welcome Home" sign. I think it was the first time since the transplant that I cried....I wasn't sure I would ever come home again.
It has been 2 years now. I have written to my donor but received no letter back. I spend some of my time volunteering for an Organ Donation organization. I go to Duke every 3 months and I have had only a few complications. The doctors and the rest of the staff at Duke have provided me with a new life and I will be forever grateful.
The transplant was the hardest thing I have ever done. It takes so much patience and courage and strength and faith. My family and my friends were my strength....they took such good care of me. They were there to tell me to keep going when I was discouraged, they were there to walk with me to regain strength; they were there to love me when I wasn't even aware they were there. Every day prayers were answered - not always the way we wanted by the way.
Life is pretty peaceful now. I feel so well, I can do almost anything I choose. Each morning when I open my eyes I am thankful for this gift of life.