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

Hi, I had a Double Lung Transplant on March 2, 2024 after being sick since 2015. The last 2 years were the worst and today although not 100% as there are challenges after but, the before is worse so although I am so very grateful to my Do her I am not sure if I would do it again as everyone deals differently and until your faced with that dicision is when you will know. If your doctor feels you are a canidate and you have a supportive family and you want to live then go for it. ..ask a lot of questions and write them all down. I had all my testing at UCLA and all my lung treatment and they are excellent, from the moment you and your team say yes, there with you through everything. If you want to discuss more please let me know. Good luck and God Bless🙏🙏

Thanks for your reply. I mentioned it to my pulmonologist and she sounded like I might not be eligible for a transplant. Maybe since I have RA along with schleroderma. I've wondered if it is worth it or not. I know it's difficult.
Thanks again for writing back to me. Life isn't always easy!

It is worth it. Let the transplant doctor's tell you otherwise. My Pulmonologist & Infectious Disease Doctors at Kaiser both told me at different times I was not a canidate. I finally insisted on a referral to see the specialist and here I am breathing on my own. Never give up🙏

So do you have any autoimmune diseases that affect your lungs? I just spent 10 days in the hospital with pneumonia and they drained 2+ quarts of fluid from my right lung. I've been home for a month now and still can't walk more than 3 minutes without sitting down and catching my breath. I'm 66 years old and I've been dealing with RA for 30 years now. I've had 3 joint replacements and should have an elbow replacement but don't want to risk an infection. So many issues to consider. So glad it's going well for you. I've been on oxygen 24/7 for about 3 months which isn't that long compared to some people. It must feel wonderful not dragging air hoses along with you. 😊
I keep praying that God will give me the strength to accept all of this. He has gotten me this far and know He won't abandon me!🙏🏼🙏🏼🙏🏼

My diseases were different, started off with TB which escalated to Bronciactisis, Hypersensitivity Pneumomitis, IPL and then MAC. I was on 15 litters of oxygen for about a year. I to could hardly do nothing and walking was so difficult. I am a 63 year old woman with a lot of life left and right now taking all the anti regection and auto immune suppreasents is difficult and I prayed everyday to give me the strength to go forward and I used to tell myself nothing in life is easy so why should it be different now. I try everyday to honor my doner and give thanks and although yes, I am very grateful to not drag around tanks or tubes and get stuck somewhere with no energy there are challenges with my new lungs but, I am here and Our Lord has granted me more time with my family. Try to stay positive and I know its difficult, but 30 years dealing with a disease is long and you have gotten this for, if you are a canidate things can be better🙏🙏🙏

I also had a double lung transplant, but on May 4-5 (it was overnight), 2022 at Mount Sinai. I was bed ridden for a couple of months and not able to walk more than 10 steps without my oxygen going down to the 30s while on constant oxygen at a level 5. Then I couldn't get my oxygen to go above 80 after lying down for over an hour. Then I was in the hospital on oxygen at level 30 and I was able sit up at 100% oxygen. Luckily I was only in the hospital for 1 week when they found a pair of lungs for me. Now I am able to walk miles and don't need oxygen. I am also able to dance cumbia for hours. Going from a life of bare existence to thriving, I would definitely do it all again. Although the meds that you have to take for the rest of your life do affect other things. For example, I had border line issues with my thyroid before, now I have to take meds. I would suggest that you go through all of the testing and see. There is a lot of testing that you need to do before you can get listed. Even if you are really bad you need to have the tests to make sure that you are a viable candidate.

Thank you! You're an inspiration for me! God bless!🙏🏼

Wow. That's quite a story. I know I've connected with you before and am glad you wrote back again. It is good to have someone to communicate with that knows what you're going through. Take care and thanks again for responding. It's so good to hear positive feedback. 🙏🏼❤️

If you have had all or most of your testing done you most likely will have a lot of information for you. You will be referred to the Thoracic Pulmonary Department. They may require a couple more test. It does take a while for all the doctors to go over every inch of your test and make a decision. It’s a task but you really want nothing but the best. Best hospital MAYO, best tests, best doctors, five or six or more. We’re all at the BEST it’s the waiting that’s hard at this point. Keep in touch so we know how it’s going for you.

I haven't had any testing done so far. I don't think my doctor felt I was ready to look into a transplant yet. I really don't know what to think about my doctor sometimes.