Has anyone here had a lung transplant? What's it like?

I had a double lung transplant in May 2022. You can read my story. What questions do you have?

Just info about the surgery, recovery period and how it improved your quality of life? Where can I read your story?

Thank you!!

I am not sure how to link you to my story, so I will give you a slight recap. I was pretty much bed ridden, on level 5 oxygen (highest level on machine that I could get insurance to pay for) and not able to eat much (down to 95lbsa). I was admitted into the hospital on 30 liters of oxygen and finally able to sit up without my oxygen level plummeting to 30. So I was in really bad condition.

I had over night surgery due to some issue with the getting the lungs even though I was notified at 7am. I woke up after the surgery when they were bringing me to my room. That day I was a bit out of it, not sure who was visiting me or the name of the nurses. They have you on meds right away due to the pain and had oxygen for just to make sure there are no issues, but only for a few hours. Then they wean you off as they give you physical therapy within a day or two of surgery and in my case I needed occupational therapy since I had been bed ridden and lost a lot of my muscles. At first I would ask for meds and then get up to walk around. Soon afterwards I didn' t need the meds anymore and would walk with anyone and then didn't need anyone to be with me. I walked whenever I got bored (which in the hospital was often).

I was in the hospital for 2 weeks after the surgery, but that is based on the person. After going back home I had the visiting nurse for a couple of weeks, occupational therapy once and physical therapy a few times. My husband and I would go for walks first just around the block and built up to 2 hours. My son and husband also bought me a treadmill for when I can't get out and walk.

It was definitely worth it for me. Although my lungs are now great, I have other issues that I need to take meds for due to the meds for the transplant.

Thank you so much for sharing. I’m glad that you’re doing better.

Are there any people that are pre or post lung transplant patients? I would like to receive some advice! Thank you!

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?