Lung transplant wait list

Been on the list since Jan 27, 2023. Had a dry run last week. My heart races every time that phone rings!

I wish you both luck. It took me such a long time to go through the testing before my regular pulmonologist referred me for a transplant that by the time I went, I was in a wheel chair on level 6 oxygen. Thankfully I only needed to wait another 4 months for a beautiful pair of lungs. I was in the hospital for 1 week prior to getting my tx to try to get more weight on and on 30 liters of oxygen. I was so happy when they came in at 7AM to tell me that they found a pair of lungs for me. I started to get worry at 6PM when they said that there was an issue with the donor's family. However, I received the first one at 11:30PM. So it can take a while even after they have been found. When I was first listed my rating was 48 and before I had tx was 75. What is your rating?
Try to keep active as much as possible, it will help you in the long run.

Wow you were really sick chickytina. Sorry to hear that. I’m glad you have your new lungs! From the first time the pulmonologist uttered the word transplant to listing it was 11 months. I have had improvement in some areas in that time thanks to rehab. They think at this point I won’t get any better. I started to have heart problems and have pulmonary hypertension to go along with the pulmonary fibrosis caused by Covid starting on Dec 2021. Was hospitalized for 2 months and both lungs had collapsed. Almost didn’t make it as they brought in my family at one point to say our goodbyes. Thankfully I made it through that and am here waiting for that call. I’m still young and I’m strong. I’m ready to do this! LAS score rounding to 34.

Hi Shari. My husband had Covid in February 2022 and has pulmonary fibrosis in the bottom third of both lungs as a result of Covid pneumonia. How much of your lungs are scarred and is the fibrosis progressive? They suggested lung transplant to my husband, but he is 69 with diabetes and didn’t think he would qualify as well as not thinking he could tolerate the surgery. I am thinking maybe we made the wrong decision. After a year, he is no better (but no worse either). However, he does not have much of a life now. He gets some better with inpatient pulmonary rehab, but quickly deconditions as soon as he gets home (have done this 3 times). Depression is a big problem now.

It is really hard when you have to start saying good byes. My son was a sophomore in high school at the time of my surgery. He had stepped up the year prior to my surgery with making or helping with dinner and setting me up with food and something to drink while he went to school when I was stuck in my bedroom (couldn't do the stairs up and down any more).
I wish you a lot of luck getting your tx. The more you keep in shape the better you will be after surgery.

Hi Sherri,
So we are about the same time getting on list!
It is scary to hear the phone ring!
I’ve become less nervous about it all though and I keep in mind one word:
Grateful
That helps be focus on the positive and not all the details of what the actual transplant surgery is all about! The team told me they thought my wait would be about 3 months.
My score is 38.
I wish you well!

Hi,
Oh my, you have been through a lot! I’m so glad it worked out for you.
You’re right, it’s vital to keep active to keep our strength up and muscles strong.
My score is 38.
I heard they are coming up with a new scoring system March 2.
The tons of testing before transplant as you know are exhausting. I felt those ph tests were awful!!
How are you feeling now?
Take care

Hi sb19. Since this was due to Covid they do not know if the PF will continue to progress. I do have pneumonia all the time. I keep getting sick at the drop of a hat, and I rarely go places that aren’t a doctor’s office or hospital. The tests show scarring all throughout. There is more white than black on the scans. I had cancer 5 months before contracting Covid, so many people thought I was ineligible for 5 years from July 2021. Mayo Rochester accepted to see me after I was one year post cancer, and I did 2 weeks of testing and a check off list and here I am. I would still check into it even with the diabetes. I know people in my FB support group zoom meetings that have it and were transplanted. They were completely decommissioned and about to pass without the DLT. Checking into it won’t hurt. You can always say no at any time in the process. Best of luck and health!

Thanks for the info. The doctors cannot tell us if the PF will progress since his was also due to COVID. If we could find a way to clear up the inflammation that is in rest of his lungs, I don't think he would need to go through a lung transplant. He has also had pneumonia a couple of times this past year since getting COVID. However, he cant stay "stuck"--no better, no worse. Just like you, only goes to doctors' offices and rehab.

Hi,
Just an update. This past Sat. I got a call they had lungs for me, but it didn’t work out:(
They call it a dry run,
I went to hospital 10 pm., they told me surgery would be at 12 noon on Sunday. I was excited, nervous but so tired since I didn’t sleep at all in hospital with all the tests and interruptions.
Dr. came in at 11:30 am and said it was a no, donor’s lungs inflamed. I cried not just for me but for the donor and their family. Dr. explained of course they only want the healthiest of lungs. I’m so grateful we live in a country with excellent surgeons! I’m in Los Angeles.
I’m at least prepared for the next call!!