Lung Transplantees: Let’s connect

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

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.

@jackiez - Congratulations on your success! This is a fantastic article. Thanks for sharing.
https://mayomagazine.mayoclinic.org/2022/08/heart-lungs-transplant-recipient-mayo-clinics-care-allowed-me-to-experience-life-to-its-fullest/

Ha ha, girl, I did just that! I went out and had a 18 steamed oysters on the half-shell. I have been slowly letting go of my love for gardening as well. It is dangerous for me to do it even now prior to lung transplant because I have a low immune system and I tend to catch environmental organisms that give me serious lung infections. I am dreading the day when I am severely hampered by shortness of breath. Prior to your transplant, were you seen by a palliative care nurse too?

Hi Tina. Thank you for the response. And a BIG Thank You for putting me on the prayer list. I have no doubt that the amount of prayers out there for me are what is keeping me going. I have no legit score right now as I am not currently listed, but Mayo feels it could be soon or possibly a few years out, they just can't tell because my case is so weird. I had my second transplant eval testing a few months ago and was deemed doing too well still to be listed. They said that if I do get listed, I would enter the list as a 30. The reason being is that I have rare genes that are going to be difficult to find a cross-match for, but I could rise on the list as I worsen and wait time increases. I understand that I could also go downhill rapidly such as in your case. My doctors are a little stymied because I am very active for someone who has 32% lung function. They are also stumped because my ct scans don't show significant lung damage to cause the amount of low lung function. I also Have a rare lung disease and rare blood type. Go figure, I knew I was a rare bird!

No, I didn't (had to actually look up what one is).

I pray that the doctors will figure it out for you. There is good and bad about having a rare blood type. There are fewer recipients that match. In my case I have a very common blood type and typical height (5'7").