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

I had a double lung transplant a little over 2 years ago. Please see my spotlight interview for more insight. I would definitely do it again. It was either I die or I have the transplant. Not much of a choice. My son is a teenager and still needs his mother. If I were you and they said that you need a transplant, I would start the process. It is not a fast process to get listed. Then some people are listed for years. After going through the process of getting listed, you can also let them know that you are not ready. However, if you spiral down as I did you will have everything set up and then they can readjust your rating. There is a rating from 1-100. Most people have their transplant between 35-50. My rating when first listed was a 48, but within 2 months went to a 75.

Thank you for sharing your story. I will look up your spotlight interview. I'm just a nervous wreck over all this.

I agree with Chickytina, I would definitely do it again, I had a single left lung transplant. I didn’t know how bad I was feeling, and looking, until after the transplant! Mayo has amazing people and resources for you to use, take advantage of them.
Hope this helps,

Thanks for that! I'm wondering if you had to stay close to Mayo weeks before the surgery. I live about 4 hours away from Rochester. Would I have to be closer than that if they call me for the surgery?

For the hospital that I went through I couldn't be more than 2 hours away from the hospital at any time. It could be different for Mayo or other hospitals. After the transplant for the first 2 weeks I was at the hospital 4 times a week and that slowly petered off to now I finally don't have my next appointment for 3 months. You are also not allowed to drive for the first 2 months after.

Thank you for that. It's so scary to me. I appreciate hearing some of the details. It helps give me a picture of what the surgery looks like. I don't know if it makes a difference what causes your lung disease as far as being approved for transplant or not. Mine is scleroderma from rheumatoid arthritis autoimmune disease. I will hopefully find out more Tuesday with my pulmonologist.

I'm wondering how close you had to be to Mayo (if that's where you went) before your surgery? I'd like not to have to be away for a long time before and after the surgery. I know there isn't a lot of time between when they get a lung and need to transplant it.

We live in Sebring, Florida which is 4 1/2 to 5 hours from Mayo Jacksonville. We did not need to relocate prior to transplant, but we did need to from the surgery and post transplant. Mayo Jacksonville has many options for temporary housing that your Social Worker will communicate during the process. Mayo wants you to be around 30 minutes or so post transplant.
Hope this helps,

Yes that helps a lot! Might seem kind of silly but I have a cat who is kind of an indoor/outdoor cat! He sometimes can't make up his mind what he wants. I would have a hard time leaving him alone for so long. I know post transplant I'd have to be down there but if I didn't have to be there to wait for the call it could be weeks. I really appreciate your help. Thanks! 😊

It can be more than weeks depending on your rating. For me it was about 2 months, but I had a high rating of 75 at the time of transplant. I have conversed with others that it has taken years. So its better if you don't have to be close for Mayo. Also don't be discouraged if it is not as fast as you hope.