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The Professional Patient: From the Heart with Lungs



"Professional Patient", I wonder what the job description would look like for that position. "Seeking candidate with a vibrant personality and a tough exterior to handle unpredictable health issues while trying to enjoy life. Positive outlook preferred. Health routine compliance a must." The fact is, this job is bestowed upon all patients who receive an organ transplant, regardless of the organ or original disease. As all patients are so often told prior to their transplant, getting a transplant is literally trading one disease for another. The set of problems from your original disease will be left behind in the dust, just a memory of the patient's former life. The issues that can arise post-transplant are manageable yet unpredictable. Every patient is different so there is no telling the life a transplant patient might be heading into.

As a Cystic Fibrosis patient needing a pair of better lungs, I remember so often having this sentiment repeated to me. "You will be trading one set of issues for another". This is a way to explain what life is like after an organ transplant so patients do not have a false expectation of what reality will be. Even with the original disease in the dust, life after transplant is a full time job. This is a job that has your "boss", your health, beckoning you at any moment needing all of your energy and attention. The job of living with disease and managing health issues also comes in waves, with periods of relative calm followed by major issues that need to be dealt with. Every patient has to ask themselves if this is a job for them; if the issues that we could face in post-transplant life were something we could handle and wanted to face. For myself, I figured that if I did not get my double lung transplant, I would have one big issue on my hands…I would be dead, very soon. That was not an issue I was ready to deal with in 2004 at the age of twenty-one. I went ahead with the transplant and close to twelve years later, I'm living life and could not be happier with my decision.

Over the years I have realized that my health is absolutely a full time job. I very quickly had to learn to live with having a new disease all over again. I was accustomed to living with the issues that came with Cystic Fibrosis. I knew when I needed to be on IV antibiotics. I knew my productive cough was my baseline. I knew the feeding tube was something I would have to live with. I knew I would be tired every day. Life with new lungs was amazing…I could breathe! I had energy! My cheeks were pink with oxygen! Life was great with better lungs. Nothing could keep me down. Then, the "boss" called. I needed a bronchoscopy because my lung function did not improve enough over a week. In my mind, this was ludicrous. I was breathing better than I ever had before and they had increased over the last week. It was only four weeks after my transplant, why did my lung functions have to increase that much? I went for a bronchoscopy and we found that I had acute rejection, in stage A2 - mild acute rejection. That's when I realized that I would have to change my mindset. Issues with transplants may not always be easy to spot. I would have to vigilant and stay on top of my health in a way I never had to do with Cystic Fibrosis. I'm lucky I caught that issue early, it was treated, and I was able to move on with my life.

The issues continued to be sprinkled throughout the next twelve years. My left airway had a bit of a narrowing which kept me coming back for regular bronchoscopies in the first year. Finally, after one visit to the doctor, the airway decided to stay open without a stent. Still to this day, if I get a cold my left lung is always an issue. I've had issues with para-influenza, RSV, bronchitis, pneumonia, low immunoglobulin levels, and numerous other issues that I can barely remember. I started to learn to live with the fact that these issues could be around the corner at any moment, threatening my existence. I ended up learning to tuck so many statistics into the back of my head. How many patients were still alive five years after a double lung transplant? How many patients became victim to chronic rejection? How many eventually needed a kidney transplant? Would the next cold be the cold that triggered my immune system to recognize my lungs as someone else's?

While I was living with not only the fear of these potential problems and experiencing some of them first hand, I realized that I was also living and enjoying every second of my life. I graduated college, started my career, moved to Manhattan, and also enjoyed time in a shore house with my friends. I accomplished life goals that were never possible with my old lungs. I went skiing on the East and West Coast, visited islands, and jumped the waves in the ocean. My career took off and I worked hard and received promotions. I ran a half marathon and was never happier or in better shape in my life. And just when I fell in love for the first time and thought nothing else mattered in the world, the "boss" called. This time, it was serious. The pain that I felt in my throat when I swallowed had me running around town getting various tests. In the end, we discovered that I had Post-Transplant Lymphoproliferative Disorder (PTLD). This was a large B-Cell lymphoma that had presented with a tumor that wrapped itself around my esophagus. It was painful and it was aggressive. My job once again, had become that of a full time patient. Poking, prodding, medications, prognosis. The "boss" could be cruel, calling me for such a difficult assignment when my life was at its happiest moment. I was lucky again that the treatment for this issue worked. The four rounds of IV medication that I took resolved the issue. The lymphoma was gone. I could go on with living life again, tucking more statistics in the back of my mind.

Life moved forward. I was pouring myself into my career, moving in with my boyfriend, getting engaged and planning a wedding. There were more issues during this time, but nothing that I had not grown accustomed too. After this long with my transplant, I was living my life and managing the issues that popped up with my transplant with ease. There was a cold virus here, a bronchoscopy there, a few sinus surgeries to deal with the polyps that became unruly, getting my diabetes under control, some extra visits to the doctor occasionally. I maintained my work schedule, my social life, my gym routine, and the eight different doctors that worked in tandem to keep me alive.

The "boss" never really goes away though and is always ready to call. Cervical Cancer was the next assignment. Again, the dreaded "C" word with the fear that comes along with it. Again, because I was so vigilant in my care, we caught the cancer when it was Stage 0, in situ. It had not become invasive so a quick surgery took care of this and I was able to get back to living my life. This time I was focused on house hunting and pursuing having a baby via surrogacy. Both of these major life events were stressful but exciting and I was happy to be back to living life. Then the "boss" called with more work...

This time it was pneumonia. Every cold virus that was rampant in the winter, I ended up catching. I lost weight, needed a bronchoscopy and eventually a two week course of IV antibiotics; something that I had not had to do for ten years. It didn't interrupt my life too badly; I went to work with my medication and carried on my day, hooking up in my office without a second thought. I recovered nicely, but before I gained my weight back I felt a lump in my breast. There was no way this was anything serious, I thought to myself. My "boss" would not assign something so serious and scary for a woman to me. We had finally found our dream home and our surrogate was pregnant. Then the biopsy results came back - Invasive Ductal Carcinoma. I was used to and expected issues with the transplant, but Breast Cancer was not an issue that I ever saw coming. It was a devastating blow that came with more doctors, more testing, more surgery, and more talk of prognosis. I decided to treat the cancer as aggressively as we could with a bi-lateral mastectomy. I was lucky that the cancer was Stage I and it had not hit the lymph nodes. The good news was that I did not need chemotherapy and would be put on a hormone receptor pill for the next ten years to reduce the chance of a distant recurrence. According to my test results, I have an eight percent chance of recurrence, which I take as a ninety-two percent chance that this is cured for good. Once again, I take this statistic and tuck it in the back of my mind so I can go on living my life.

It is certainly true that I have traded one set of problems for another. It's something that's easy to see based on my story. I've taken every statistic and every fear and tucked it away so that I can focus on my life. My lungs are healthy and I can breathe...most days, that is all that matters. I manage through everything else and deal with whatever is in front of me. This is just the reality of living with a disease, patients never know what is around the next corner and there are no guarantees that the outcome will be good. The best patients focus on the positives of their life and manage their health while living every day to the fullest. In my case, I have to look forward and not dwell on what I have been through. I have a husband who loves me and a home to prepare. Not only is our surrogate pregnant, but we are expecting twins! Maybe good things happen to me in pairs, two new lungs, two new breasts, and two new babies. I cannot wait to see what the future holds...a future that never would have been possible without my transplant. Life is good. ■

Disclosure Statement: The author has no conflicts of interest to disclose.




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