Double lung transplant

Hi @kathy103, a belated welcome. I understand from you profile bio that you experienced rejection. Despite that, you're glad you choose transplant. I look forward to getting to know more about your story. What led to your needing a transplant? How long did you have before your experienced rejection? How are you doing now?

You are remarkable for your status of disease. I don’t know how old you are or if you’re married with children, but I would wait until you feel a lot worse or until you can’t do the things you’re doing now. Discuss it with your family and PrayPrayPray about it. It is a hard road to choose if you get the transplant, but I’m glad I did, even though mine wasn’t so successful. Otherwise, I would have died by Christmas 2018 at age 60. Trust in God, He will lead you to the right path. Good luck♥️🙏🏻

Where did you have your transplant?

@thegirls I had a heart double lung transplant in April 2021. My heart was the main driver but also needed the lungs. So far so good for me. I have not regretted my decision 1 day. I am living life to the fullest-spending time with family and friends, enjoying my hobbies of riding and competing on my horses, walking my dogs and even traveling. I have seen big moments in my family and friends’ lives. It is a personal choice. Since having received this gift I believe I am here to give hope to others- those waiting on a transplant, those just transplanted and the family members of donors. I hope this helps-the journey is rough in the beginning but for me, the view was definitely worth the climb.

Thank you Sidney.

I’m at the Phoenix. I had my first lung surgery in 2012 there as well. Great place to be.
I enjoy (maybe not the best word) responding to people who are feeling lost. It seems to give everyone a little break of calmness which we all need. Thank you for the links.

As some one else noted, the decline can be swift. I contracted COVID November 2020, which damaged my lungs (I already had pulmonary fibrosis) severely. I went from heavy breathing after climbing 3 flights of stairs (switching trains) to being in the hospital on 30 liters at 100% oxygen in May 2022. Luckily I was only in the hospital for 1 week prior to getting my new lungs. It's better to have all the testing done and ask all of your questions before hand. Make sure that you write them down (I use notes app). Do all you can to keep up your health in the meantime. Ask what exercises you can do (I wasn't allowed to do much after I went into a wheel chair). Afterwards you will need to have physical therapy. Make sure that you get up as soon as possible and get your lungs working. I would ask for the pain killers and would walk with anyone that would walk with me in the hospital (once even with clergy, he was out of breath after a few laps).

The decisions you must make prior to, and during the approval process are daunting, one resource that has helped my wife and I is the Mayo Jacksonville Lung Transplant Support weekly Zoom calls. There is a lot of information, and experience shared. I would be happy to answer any questions that I can and tell you my experience.
Thank you for reaching out to this forum.
Sid

@thegirls, That is a really tough decision that you and your husband are facing. I don't have experience with a lung transplant, so I have located some support discussions where you can meet other lung patients who also faced the decision about lung transplantation. Please know that you are welcome to join any discussion anytime with any questions and comments.
You are not alone. I want to invite @helenrivera, @chickytina, @nnelson823, @nnelson823, @ktgirl, @sidney073, @kathy22, @jackieiez to meet you and to share their support and experiences.

Discussions that I think will provide you with some member insights:
- Lung transplant: investigating the pros and cons of double transplant
https://connect.mayoclinic.org/discussion/lung-transplant-2b6d3f/
- Lung Transplant: What can I expect?
https://connect.mayoclinic.org/discussion/lung-transplant-2/
- Does anyone regret getting a lung transplant?
https://connect.mayoclinic.org/discussion/does-anyone-regret-getting-a-lung-transplant/
- I would like to hear from anyone who has had a lung transplant
https://connect.mayoclinic.org/discussion/lung-transplant-3/
- Lung Transplantees: Let’s connect
https://connect.mayoclinic.org/discussion/lung-transplantees/
I am very happy to share these articles that feature @chickytina and @jackiez:
- 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/
- https://mayomagazine.mayoclinic.org/2024/07/heart-lungs-transplant-recipient-mayo-clinics-care-allowed-me-to-experience-life-to-its-fullest/

@thegirls, You are absolutely correct about how thoroughly the doctors at Mayo explain everything. I was at Mayo Rochester for my liver/kidney in 2009. Which Mayo location are you at?

@francisann I don’t know where you are at this point but I can so relate to how you feel. I was told at the Mayo I needed a double lung transplant. I’ve been dealing with issue most of my life. I went from childhood asthma to COPD and now emphysema that showed up in 2012 and maybe before. I’ve been on oxygen for since 2017. At first it was just for sleeping or anything like swimming or exercising and now I’m oxygen 24/7. I’ve gone through many tests and it seems my time is now getting limited. I have to make that hard decision. I’m very aware how awful the medication is going to be from now on and wonder how long it will be before it causes liver, kidney problems or cancer. Skin cancer being the first in line. It is the most risky transplant surgery a person can have and the lowest survival rates. I realize this all sounds terrible but I ask a lot of questions of my transplant surgeons. It’s so important to ask questions to make a decision that’s right for you.
The Mayo is great about talking to you point by point.
I can tell you that if they are saying you need it know ask more questions. Get fully informed in every way.
It is true that you can start getting worse rather quickly. I went from not really using the oxygen to full time in 1 years time. It seemed every few days I needed it more and more. Pay attention to your body and what it’s telling you.
One week I could walk up my stairs in my house with no problem the next week it became difficult to walk down them. Recognize your lungs, heart and blood all work together. If your heart cant get enough blood because you oxygen is to low to carry blood through our body things will change a bit faster. Watch for weight lose and getting tired easily. Naps have become a necessity. When and if this starts happening (based on what you have told us) you need to really start thinking hard about what to do.
I am still trying to decide if I’m going to have the surgery or let nature take its course. It’s a very difficult decision to make but don’t ignore what your doctors are telling you. I went through 8 tests and they sat down and went through every one of them with my husband and I. It helped a lot yet I still have not been able to make the decision.
I wish you well.