Last year I wrote a column post titled, “5 Things I Wish I Had Known Before My Transplant.” It’s essentially a curated list of the advice I give friends on the transplant waiting list. Are you waiting for a lung transplant? Have you had one already? What advice do you wish you could have given yourself before you had it?
If you haven’t had a transplant and don’t need one right now, what do you wish you had known when your doctor diagnosed you with pulmonary hypertension? What advice do you give newly diagnosed patients? Are there specific experiences that inform your advice?
I’m grateful that I journaled a lot while I was on the transplant waiting list. Through those notes to myself, I remember exactly what I was most anxious about going into the operation. Because of that, I’m able to reflect on which of the things I worried about ended up being a real concern, and which of the real concerns I had thought about in advance. As is often the case, my biggest concerns ended up mattering very little, and I could have saved time and energy not worrying about them. The bigger issues I had post-transplant I could never have predicted, and it wouldn’t have served me to worry about them either.
This list is mainly positive, to give hope to people who are having to consider lung transplantation. I didn’t have enough positive examples to look to before my transplant. The majority of my friends who had had transplants had passed away by the time I got mine. I expected to follow shortly after. That’s one of the reasons I’m so happy to be able to serve as a positive example to anyone considering transplant.
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