I am heart-double lung transplant from April 2021. What advice are you looking for specifically? Are you pre or post transplant?

I am pre transplant. Just worried I guess. The unknown is unsettling. Thank you!

I had a double lung transplant in May 2022. It can be unnerving waiting for a transplant. Are you more worried about the wait or the surgery or life after transplant?

The surgery and afterwards!

Try to keep as active as possible prior to surgery, you will be able to recover faster after the surgery.

For the surgery, you are asleep. Research your surgeon to see how many surgeries they have done and if there is anything else that you can find about them. You should have a meeting with them prior to the surgery.

I woke up in my private room with 4 chest tubes. The first day after is a bit a blur, because you are on a lot of meds. Within a short time, they get you up and walking. At first they have you walking with a walker to hold the containers that the chest tubes drain into and to make sure that you have your balance. Walk as much as you can. At first I had some pain so I would ask for my pain meds and then go for a walk around the floor. I was out of the hospital 2 weeks after the surgery, but know of others that it took longer. Everyone is different and will have a different recovery experience.

In the hospital I had physical therapy and occupational therapy (only once) after the surgery. I had a visiting nurse and physical therapy come a couple of times when I got home. I also had an occupational therapist come once. Walk as much as you can, you will recover faster. When I was in the hospital I would walk with anyone I could until they said that I could walk around by myself. When out of the hospital, I started walking around my neighborhood and now I use a treadmill when it is cold.

After surgery I wasn't able to eat for the first few days. You will be on a transplant diet that will loosen after a few months for some things and others you will never be able to eat again. If you like cold cuts, sushi, ceviche, grapefruit and pomegranates, eat them now while you still can. There is a list of things that I can't have due to my potassium being high including bananas, plantains, papaya, etc. There are others that I can only have on a limited basis including white potatoes and avocadoes.

Is there any other questions that you have?

Thank you so much!! I really appreciate it! I’m glad you are doing well!!!

I am 21 months Post Lung Transplant, the unknown doesn’t make things easier that’s for sure. What made things easier for me was the trust we have in our Transplant Team.

I am almost 11 years post double lung transplant! I did not receive my transplant at Mayo clinic, but I get my care here now that I live close by.