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

@ktgirl, it is important to have confidence in the care you are receiving and to have good rapport with your team. You are not offending anyone if you address this with the transplant department at Mayo Clinic. You can talk about it with the doctor and let them know how you feel or discuss it with the lead physician/dpartment head.

Another option is to ask for help from the Office of Patient Experience. They can help guide you. Here is the contact info:
Mayo Clinic Office of Patient Experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu
https://www.mayoclinic.org/about-mayo-clinic/patient-experience

I had a dbl lung tx July if 23.
Not to scare you but unfortunately mine was an absolute train wreck. I was doing better before transplant than I am after. Had many complications that almost did me in but my wonderful transplant team saw me through it.
I have many residual severe side effects to this day, but I am lucky enough to still be here. I am blessed and very grateful to my donor and donor's family for making the decision they did. In spite of all my post transplant afflictions that I live with every minute of every day I would do the transplant again. I might not be here right now otherwise.
My outcome is very rare, there are so very many who came through their transplants beautifully and are flying high.

I was listed very low on the unum scoring. #17 in April 2023. But July 2023 I got my call for transplant. When they opened me up and got a look at my lungs they said they were much worse than they thought and were shriveled up like a couple of prunes.
So yes get assessed and hopefully listed asap.

This seems a very strange opinion from a pulmonologist at Mayo. Something missing that the Doctor you saw isn't aware of perhaps? Although I have seen one there I didn't care for much. Seemed a bit uninformed or new to the job.

Hi, @kathy22.
I am so sorry about the complications you have been dealing with since your lung transplant. When we undergo a transplant, we definitely want and anticipate a better outcome. And we definitely don't want to feel worse than we did before the transplant. I'm glad, though, that you have a good transplant team who has been working with you to see you through the complications. I really appreciate your positive attitude despite the disappointments. I had a kidney transplant just over a year ago and have come to realize that the journey isn't necessarily easy but, all things considered, it's definitely worth it. I hope your transplant team can find a way to resolve the complications so that life improves for you. Wishing you all the best! Hugs.

I am coming up on my 1 year Lung Transplant Anniversary, I have truly been blessed from start to finish during this journey. I would do this again without hesitation! I was diagnosed with IPF by Mayo Jacksonville after my local doctors could give me a diagnosis. It didn’t take my wife and I but a short time to realize that Mayo Clinic was the Right Place - Right Time, and we knew we were in the best hands.
We went through testing to first determine the seriousness of my lung disease, and were told I would need a transplant, I was approved for and listed for both a Single Left or a Double Lung Transplant. My initial testing was in December of 2023, I was approved late February/early March and listed in March 2024, my transplant was April 7, 2024. I had only 1 “Dry Run” that was 2 days prior to my call that resulted in my Left Lung transplant. So my journey was very quick, during this tight time frame we were giving all the information we needed to make our decision without any second thoughts.
If you have not done so, get with your Nurse Co-Ordinator, and join the Lung Transplant Support Group Zoom calls that we have every Tuesday from 1:00 pm to 2:00 pm, they will allow you to hear Pre, and Post Transplant stories, and questions as well as allowing you to ask questions.
I hope this helps…..