3 ways I prepared as a PH patient for heart-lung transplant
Navigating the transplant process is never easy, but these tips can help
When I was diagnosed with pulmonary hypertension (PH) in 1999, the subject of organ transplant was introduced almost immediately. Doctors explained to my parents that PH was terminal, and that transplant, usually of the heart and lungs, was an option for extending life.
For the next 14 years, transplant loomed as a worrisome but distant inevitability. After a thorough fight with PH, a decline in my health during my senior year of high school finally led my PH specialist to push me toward a transplant evaluation.
This recommendation hit us hard. Despite our foreknowledge, my parents and I suddenly felt that our understanding of transplant was minimal. Fortunately, it would be another five years before doctors rolled me into the operating room for my heart-lung transplant surgery. While I don’t believe anyone can be fully equipped to handle that experience, here are a few things I did in the meantime to help me prepare for what was ahead.
Choosing a center
Before a patient can be evaluated for transplant, they need to find a center that will accept them as a candidate. There are relatively few hospitals in the U.S. that perform heart-lung transplants, which considerably limited my options.
My family and I ended up considering several additional factors when choosing a transplant center. The most important was location, although we eventually had to disregard this detail. Other factors included the center’s history with heart-lung transplants, familiarity with PH patients, and logistics, such as insurance coverage.
For most of the five years I was listed, I was with the program at the Mayo Clinic, which checked all of our boxes. However, as my illness worsened, they struggled with several aspects of my listing in their specific program. This involved everything from the limited donor pool in Minnesota and surrounding states to the exceptions my case required. Ultimately, they struggled to elevate my listing in a manner that reflected the severity of my need.
After a great deal of debate, we transferred my listing to Stanford Health Care in California. While this was a long distance to travel, Stanford met all of our other requirements. In 2018, this is where I ended up receiving my transplant.
Seeking education
As we moved forward with my transplant evaluation, education came naturally. It was provided to us in the form of pamphlets, patient seminars, and doctor appointments. It then continued to trickle in to us in streams, as my waiting period during my college years stretched on.
I also made an effort to seek education independently. I found several people on social media who had undergone a lung or heart-lung transplant. This allowed me to become more familiar with the day-to-day realities of life post-transplant. It was also a positive way to envision my future and to strip away the unknowns of an extreme and complex experience.
In addition, I did research anytime I was unsure about a specific aspect of transplant. In particular, I remember being very concerned about the diet restrictions I would face. As a cheese lover, I started paying attention to which of my favorite cheeses were pasteurized. I also made sure to eat a lot of Brussels sprouts, one of my favorite foods, knowing that they aren’t recommended following a transplant.
Preparing my body and mind
There wasn’t much I could do to physically prepare for my transplant. I had a goal to gain weight, but made little progress in that area. Instead, I ritualistically applied lavender oil to my chest, where many new scars would soon live. I also meditated often, connecting with my body. With a hand on my chest, I would breathe deeply, generating a mixture of prayer and good energy as I thought about the future.
In hindsight, I could have done more. With a transplant comes a high risk of skin cancer and kidney disease. From a long-term perspective, these are aspects of my body that I could have been more careful with before transplant, even if it only came with minimal benefit.
Despite the actions I did take, the transplant process was still an overwhelming whirlwind. Transplant in the PH community can sometimes be kept vague right up to the point of urgent need. My encouragement to any PH patient, regardless of their disease progression, would be to do their research.
Transplant is scary. It’s not something anyone truly wishes to face. But by familiarizing oneself with the process, and preparing in whatever ways are meaningful, the journey can become a little easier.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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