I would like to hear from anyone who has had a lung transplant

That's good to know. I have no idea what rating I will get. I'll find that all out eventually. I probably won't find out much from my pulmonologist Tuesday. They have a whole separate team for the transplant department so I would imagine I'd have to set up an appointment with them first. Then I'll go from there.

We have a 14 year old Yorker so we rented an Air BnB that is pet friendly, but be sure to check with the Social Worker you are assigned to see what options for pets are available.

I guess we'll have to see what we can do. Hopefully we can work something out. Thanks so much for your help!

Anytime!

There is a whole battery of tests that my transplant team had me take before they were able to discuss my case and get my rating. It is not a fast process. Due to my advanced condition when I met my team, I was able to have my case rushed and got through all the testing in a little over a week. However, that entitled doing up to 25 tubes of blood at a time.

Wow, that's a lot of blood! I'm not sure where I'm at as far as what rating I would get. I've just started using oxygen about a month ago. I'll probably start taking Ofev soon. I'm not looking forward to it. So many side effects!

I got used to the side effects of Ofev pretty quickly and could schedule things around them. As far as I know, you have to go through the battery of tests prior to them discussing your case and then getting listed and getting a rating. I was in a wheel chair (couldn't breathe enough even with oxygen to walk very far) before I started all of the testing.

Ok. Yeah you were definitely more critical than I am. I belong to a Facebook group with the Pulmonary Fibrosis Foundation and one of the moderators said to check into the transplant program right away so that's what I figured I'd do. I can understand why they would want the tests done beforehand. Thanks again. You've been a great help. 😊

Hello,
I received a double lung transplant July 2023
Had many complications which almost cost me my life but am still here 11 months later!

That sounds pretty scary! I hope you are feeling better now! I'm quite a ways from needing a transplant yet. I did ask my pulmonologist about it last week. She said she would have someone call me but she left for a three week vacation after I was there so I don't know if she contacted them or not. Thanks for your comments.