Knowing transplant was my plan when all else failed, I lacked curiosity to gather information before making a decision. I focused on survival: more information only increased my anxiety. During my training class, I scribbled in a sketchbook and relied on humor to gloss over the enormity of what I was facing. I still don’t wish I had known that my transplant would come with unanticipated and persistent complications, or that it would involve more physical pain than I had ever experienced before. I could not prepare for those aspects, and knowing they were coming would only have drained my energy to fight them.
Friends who are looking ahead to a possible transplant in their future often ask me for advice to prepare. With that in mind, I’ve listed a few things I believe I would have benefitted from knowing before my transplant:
1. Transplant comes with permanent dietary restrictions.
When I had pulmonary hypertension, I did not appreciate that I could eat anything I wanted (probably because I rarely wanted to eat anything at all). I no longer battle nausea or struggle to maintain a healthy weight, but chronic immunosuppression does come with restrictions. Grapefruit interferes with immunosuppressants (and many other medications), but that was easy to give up since I don’t regularly encounter grapefruit in restaurants or friend’s homes. Not until after my surgery did I learn that all meats must be hot within an hour of consumption. That means no sushi. No cold cuts. Ever again. Had I known this before, I would have found a nice spot to park my oxygen concentrator and started pigging out on spicy tuna rolls and deli sandwiches.
2. Chest tube scars heal.
While listed for transplant, one of my main preoccupations was the impact chest tube scars would have on my body image. I already had a chest tube scar from one open-heart surgery, and I wasn’t fond of it. Chest tubes would be better labeled chest hoses–they’re huge! But my chest tube scars healed, and they look more like an awesome tattoo than six additional blemishes to my already scarred torso. Honestly, I think I should have more impressive scars to show for the battle I fought.
3. It takes a full year to recover. Don’t kid yourself.
Imagining myself younger, stronger, and more determined than most patients, I assumed I would recover quickly and surpass expectations. But it was a year before I tapered down to the lowest dose of Prednisone. A year before my doctors felt comfortable spacing appointments months instead of weeks apart. A year before my health stopped being my number one focus and I could find other things to talk and dream about.
4. Patients are surviving.
Going into transplant, I had a few friends who had received heart-lung and double-lung transplants, but the longest survivor I knew lost her battle after 12 years. I had less of an optimistic outlook on survival rates than I do now that I know more about the statistics and their inaccuracy. There are recipients alive today who had their transplants when centers first started performing heart-lung transplants (over 30 years ago), so doctors truly cannot determine a limit for how long these transplants can last.
5. Quality of life does improve.
Oxygenation had far-reaching effects that make me able to say with confidence that my quality of life after transplant is immeasurably better than before transplant. Simply by virtue of spending more hours a day awake, I get more done, appreciate life more, and have more experiences with the people I love. The best part? Joining my parents on hikes and sensing their joy as I speed ahead.
This article was originally published to my column, Life After PH through Pulmonary Hypertension News. Since then, I’ve gotten feedback from other transplant patients adding to my list, and patients pre-transplant determined to savor the foods they can still eat. Still others have asked questions only their doctor can answer. I have a hard time empathizing with those who obsess over certain sacrifices necessary for transplantation. No, I’m not another voice in transplant support groups chanting, “But you can breathe!” as if that fact eases every trial for a lung transplant patient, despite its inefficacy on the rest of the oxygenated world. What I keep going back to is that transplant is a choice between life and death. One does not receive donated organs otherwise. Most will choose to live, and find ways to adapt to whatever life brings.