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Lung Transplantees: Let’s connect
Transplants | Last Active: Sep 7, 2022 | Replies (20)Comment receiving replies
Hi Jackie. Thank you for your reply. I was put on the deferred list last week at Mayo as I am not in bad enough shape yet to get listed. Although I am glad of that, I also realize that that day is coming; probably sooner than later. I have rare genes that are going to make my transplant especially difficult; as in, constant rejection. The drs at Mayo assure me that it is surmountable, but all medical journals indicate that I would not have a good outcome. I plan to ask my surgeon to provide me with some that say otherwise. Have you had any issues with rejection? I had read that it is common to experience that at least once post Ltx. How was your recovery? One of the drs told me that the first month is pure hell, but after that, patients are glad they went through the transplant. How are you doing theses days?
Replies to "Hi Jackie. Thank you for your reply. I was put on the deferred list last week..."
Terri,
The first month when I was in the hospital is a little fuzzy😊. But I can tell you that the pain management was exceptional. I do not remember any significant pain.
I had some complications during the transplant (lung related) and had kidney issues before and after that caused me to have to have dialysis for the 4 weeks I was in the hospital. I was VERY weak and had to relearn how to use my muscles. Hands, arms, legs, core, etc. I was walking, lifting and doing yoga before transplant. The stronger/more fit you can go into the transplant the better. Mayo has us do respiratory therapy daily-I would call it a combo of PT and Respiratory therapy. It is hard and frustrating at times but once you turn the corner the improvements are very noticeable.
I had my first rejection at about 15 mos-with the lungs, not heart. I am currently adjusting meds and going back for bronchoscopy in 10 days.
It was absolutely worth it!
Mayo Magazine did an article on me recently. I put a screen shot of the article below. I cannot figure out how to put the link on here but you should be able to google it. It gives you some pics and insight and hopefully some hope too!
Jackie
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I would say enjoy the time before, if you can do the things you won't be able to after. Like having grapefruit, sushi (or anything from where they make sushi or ceviche), meat cooked anything other than medium-well to well done. Also being able to smell flowers. I look at them when I go for my walks, but can't have plants or flowers.
I hope that you are not in too much discomfort. I know I was out of breath with someone else pushing me in a wheel chair even on 6 liters. I wasn't able to complete a sentence without gasping for air. I hope that you don't get as bad as I was before you get your transplant.