Will anyone share post transplant experience - Quality of Life?

I have not had a lung transplant but I have a liver transplant. I am sure there are major differences. My transplant was a really , really big deal too. A year out of my life and changes after that. Almost all of the changes you mentioned apply to me to. But they are all doable and get to be routine after a while. You don't even notice. I once was told "it gets better and better". And that has been 100% the case for me. For me I gladly traded oysters, taking pills every day , wearing masks the first year and not eating street vendor foods in exchange for no liver cancer and a new life. Two and a half years later my life is very similar to pre transplant and I am as grateful as can be. I would suggest go for it. Best of luck. Prayers up.

I am 28 years post liver transplant. The comments by craigcraig are right on. The first year, maybe 2 years is a time of adaptation to some of the limitations he mentioned and getting stabilized as far as medical matters. Then we fall in a pattern where some of the restrictions(oysters, salad bars, etc) become second nature. Medical appointments become less and less with organ stability. We gradually reclaim the life we had prior to the diagnosis that took us to a transplant. Life is good. I am grateful that I am here alive to report on it and have never felt that I couldn't do something I wanted to do. Best to you!

I see from another post that you are a runner. You come in with the significant advantage that your body is generally in good shape and you understand discipline. The second paragraph of your post here is mostly true for the first 6 months, then you have a gradual modification/losing of the rules. The objective you are running towards(yes, pun intended here lol) is labs every 2 or 3 months, an yearly thorough medical evaluation and maybe a pulmonologist visit every 6 months. Meanwhile, you will be building up/training your new lung to capacity and returning to your pre-transplant life. BTW, I've had horses all my life and after a few months, trained back to riding plus doing barn chores. Yes, there is a good life for you "on the other side" of the transplant.

@cromme50
Correction to the post above:
Not "losing of the rules"
But "loosening of the rules"

I had a liver transplant and life is good 2 years post transplant. I can't speak to what you'll experience with a lung transplant but I know someone who can - Ben Askren. He is a famous Olympic wrestler who had a double lung transplant around a year and a half ago. Check out his Instagram channel. He just returned to competition around 1 month ago. My neighbor also had a double lung transplant 4 years ago. His daily immunosuppressant dosage is still higher than mine, but he is active and enjoying life.

I had a double lung transplant in 2022 and you can read my story on this site. However, I went to being on 30 liters of oxygen to not needing anything any more. I was pretty much bedridden and then received my lungs. I made sure in the hospital to get up and walk when ever possible. I would walk with anyone. I have pretty much settled into a routine of taking my medication. The meds for the transplant are only twice a day, but other issues have arisen due to taking the meds (or just that they have been noticed now) that I need to take other meds and take meds 6x a day in order to not have bad drug interactions. Life is much better now though. I am able to get up and walk, go swimming (in my pool), cook and take care of my family (instead of them caring for me). Life is not what it was before I got sick, but it is good.

@chickytina, allow me to pop in and share this link with @cooperfitz and other where you shared your story:

Dancing til my feet hurt with new lungs: Meet @chickytina
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/dancing-til-my-feet-hurt-with-new-lungs-meet-chickytina/

Thank you - all. I see there is a support group meeting on Tuesdays. The site says to contact Bea for registration but for the life of me I cannot find a way to message Bea.

Any thoughts ?

@cooperfitz
I read that this group is open to Mayo Patients so first, are you a patient at Mayo?
I discovered that by clicking on the "Add to your calendar" link, you will find the information to contact Bea.
I hope that you will be able to participate.

Thank you - and yes, I am a patient.