Lung Transplantees: Let’s connect

Hi, Terri. Your discussion has created a place to meet other lung transplant patients. I hope that you will hear from others who have experience with lung transplants.

I want to tag @burrkay, @chickytina, @jackiez, @bcrandall, @rockorobin to drop in and introduce themselves.
Terri, To get this discussion started, What would you like to ask to other lung transplant patients?

Hi Terry,
I’m a heart and double lung transplant from April 2021. Do you have a question about a lung transplant topic? Or experience?

Hi Terri,
When did you have your transplant? I had a bilateral lung transplant on May 4th (right lung) and May 5th (left lung). You can see my transplant story. Have you had any issues since the transplant?

Hi Tina! Congrats on your new lungs! I have not had a lung transplant yet, but I do not think it is too far off. I was seen last week and was again put on the deferred list, which is ok by me. I am curious as to why you had both lungs done on two separate days? I had never heard of that being done.

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?

Hi Rosemary. Thank you for connecting me with these members.

It was a night surgery so I had one put in at 11:30 PM and the other at 12:03 AM. There was some issue with the donor (or their family) that I had been informed at 7AM that I was going to get the transplant sometime that afternoon, but didn't get prepped until around 10PM.
What is your score? I went from 48.6 to 75 within weeks, due to how fast I was going down hill. I will put you on my prayer list, if you don't mind.

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.

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

@jackiez - Congratulations on your success! This is a fantastic article. Thanks for sharing.