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Heart/lung transplant
I’ve not had a heart and lung transplant yet, but am told that’s where I’m headed. I have congenital heart/lung conditions. They are progressively getting worse, and soon I need to decide if this is even an option for me. I’ve met with lung and heart transplant doctors at Mayo. And now I’m looking to find someone who has experienced this type of transplant, or lung transplant, to tell me of their experience with the process, and how they feel. If you have experience with a patient, or are a patient with experience of this I’d love to chat.
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Hello-I had a heart double lung transplant April 2021 at Mayo in Rochester, MN. I also had a congenital heart issue that eventually affected my lung capacity. I am happy to share my journey. Are there particular questions?
I will tell you that I am fortunate to be doing well and living life to the fullest-I work out 5+ times a week, compete on my horse, have traveled internationally since the transplant and enjoy spending time with family and friends.
I was in the hospital about 4 weeks and then had to stay in Rochester for 2 more months for frequent labs, checkups and daily respirators therapy (like PT). I have discovered that the lungs are more delicate than the heart and are more sensitive to all the external environmental items.
Please feel free to ask specific questions.
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2 Reactions@jackiez that’s amazing. Sounds like your transplant was very successful. I’m looking to know the good of your experience, the bad, and everything in between. How have you felt on immunosuppressant medication? Do you have more energy? Have you had lots of infections? What about biopsies to see about rejection, do you have those often? Do you live near Mayo?
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1 Reaction@solkitten5 it might be best to talk via the phone. I will DM you my number.
Hello ! My husband is on the Heart Transplant List since November 2024 & he has been through numerous tests, many doctors appointments & I have a cousin that just had a double lung transplant in March 2026. He was in the hospital for 2 months, then after he was released from the hospital, he & his wife stayed close to the hospital until July & now he is home !! He’s doing very good.
God Bless you.
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2 Reactions@salpuck1979 I’m so glad to hear your cousin is doing well. I hope he continues to do so. I also wish your husband much luck getting his heart. This is a big scary thing to be facing, so it’s good to hear people out there have experienced it, and are doing well.
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1 ReactionI had a double lung transplant on 5/5/2022. I was on 30 liters of oxygen prior to my surgery and now don't need any. I had my surgery at another hospital that specializes in lung transplants in my area. I have had mainly positive things happen since my surgery. I have had the beginnings of rejection a couple of times that was handled by increasing my Prednisone. I have also had some other issues come up after the surgery, but overall my life was extended and I have a better quality of life.
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