My journey to lung transplant was definitely not what I expected. It started out similarly to what many other cystic fibrosis patients experience. I had hospitalizations in high school and college. As time went on, these hospitalizations increased in length and frequency. At age 30, I was starting to think about the real possibility of getting a transplant … but I wasn’t quite ready yet -- it seemed like something that would happen in the distant future. I told myself I was not going to deny the reality or avoid the inevitable. I knew I wanted to live longer if given the chance. ‘When the time comes, I will be completely ready,’ I thought.
I researched my options for transplant centers. I read about the cities where the centers were located, ease of travel, cost of hotels, nearness to family, and most importantly, the transplant center statistics. After finding this information, I visited one of my three transplant center options, and knew immediately Pittsburgh was the right one for me. Pittsburgh was 3.5 hours from my house, but the route was straightforward -- just like my path to transplant would be!
After a tour of the medical facility, meeting the head of the transplant center, its nurses, and the surgeon, I was making progress in the plan for transplant. At the first visit, and the completion of the transplant evaluation, the transplant team told me my pulmonary function tests were stable and that it wasn’t the right time to be listed -- I was too healthy. “Please come back once a year,” they told me “and keep us updated on your health status in the meantime.” ‘Ok, great!’ I thought.
I went home and started making lists. I had lists of what to bring to the hospital, what clothes should stay at the hotel with my family, what foods I would want afterwards, what I should write on the 3x5 note cards when I couldn’t speak after surgery, which slippers to bring, who would take care of my precious Chihuahua, Ava, and all the details in between.
At 40% lung function, I was doing my best to keep active and stay social -- I even went on a blind date! Mark entered my life without much knowledge of CF. He definitely distracted me from my fears of the unknown and certainly kept me laughing with his witty sense of humor.
During my next yearly transplant visit, I was still stable and did not need to be listed yet. “Go home, enjoy life and keep doing your physical activity,” they told me. After the good news, Mark and I got engaged and married a few months later. We were enjoying married life together, traveling, and had adopted a new dog.
Eighteen months after Mark and I were married, I had sudden, intense chest pain that would not go away. After muscle relaxers failed to ease pain, Mark drove me to the nearest ER.
After being admitted and quickly getting sicker, I was taken by ambulance to Pittsburgh. I was diagnosed with severe pneumonia and a physician told my husband I would not be leaving the hospital without new lungs. ‘Wait a second!’ I thought. I had not even been on the transplant list. Transplant wasn’t supposed to happen this way.
I did not have a bag packed, clothes for the hospital -- all my planning had gone out the window. I was now in acute lung failure and was placed on a ventilator. I was added to the lung transplant waiting list on Christmas Day 2012, only a couple weeks after arriving in Pittsburgh.
I was in the ICU now under heavy sedation. Most of my transplant story was told to me from my husband’s experience as my caregiver. As it turned out, my planning and preparation was not wasted. If I had not researched transplant prior to arriving in Pittsburgh, I would not have been healthy enough to complete all the rigorous testing in my compromised condition.
On Jan. 4, 2013, I received the gift of new lungs. It was not the path that I had planned for, but it was the miraculous result that mattered. The plans that we make are never guaranteed no matter how much we try to steer. It is our responsibility as patients to take care of ourselves, look ahead, be knowledgeable of our treatment options, and make sure we have someone close to us who knows our health care wishes. Thankfully, Mark and I had discussed transplant, and he knew from the very start of our marriage that lung transplant was something I wanted if I needed it.
When the time came to make my health care decisions, there was no doubt in his mind that I wanted the chance to breathe better than I ever did before. With my hard work, his boundless love, a gracious donor, and a phenomenal health care team, lung transplant was possible. Even though it was far sooner than we planned, I was ready and willing to receive the greatest gift of all.
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