Lung Transplant Post-op? would like to hear positive stories

In August it will be my 5 year anniversary for my very successful bi-lateral lung transplant at Mayo . This works it is a great thing and I show no sings of slowing down

I’ll reply in brief for now. We were seen at Emory and finished the major portion of the test on June 21. They were to meet June 22 and give us the results (being on their list or waiting). We haven’t heard anything. We would feel more comfortable with a second opinion and my husband spent several days working on the forms that were emailed to him. They require a return fax. He signed his release form. He really hopes to transplant at Jacksonville campus. Emory feels he is a tad early to transplant. They want him stronger and 15 lbs lighter. It was a sobering visit. With Covid they expect him to recover alone in the hospital and this is not okay with me! We are hoping for better news and hope at Mayo. They do not feel my husband will survive Covid directly and won’t live long enough without a transplant to wait for it to “go away” or get vaccines. So we move forward on this next step. Lots to think about each day. Thanks for reaching out. @rosemarya

@abmac
Is getting a second opinion at Mayo in Jacksonville an option? Mayo will want some of their own tests but would also likely accept a lot of the Emory tests. I found that the sicker I got before kidney transplant the less options I seemed to have. Illness can really paint you in a corner. Sheading 15lbs before transplant sound daunting!!! Fluid retention, toxins, low energy, uremic fog all make it tough to lose weight. I met an awesome guy, Scott who was turned away from getting a liver transplant at a well known center because of his weight, literally told to go home and die but Mayo Clinic in Rochester pioneered a surgery customized to him and saved his life. Mayo seems to find options for people that seem impossible at other institutions. Here is a link to Scott's story https://www.youtube.com/watch?v=j8bn8JBE2TA Don't get my wrong Emory is a great institution and it sounds like you've been making every right move, but other options may be out there somewhere. Best wishes to you and your family as you navigate this narrow road.

I received a single lung in 2005 and for the most part have been doing well. Just had to change a few medications and watch for skin cancers. And taking care of myself like Covid-19 was around before it was a thing. But every person is different and has different outcomes.

We submitted our paperwork for a second opinion at Mayo. We just have no idea how they’re going to see us with Covid numbers rising.

@funk8nguy, Welcome to Mayo Clinic Connect. I am happy that you have joined this discussion about lung transplants. I am even happier that you shared your positive message. I thought I was a transplant veteran, (transplanted in 2009 - liver and kidney). It is evident that you are taking good care of you.
funk8nguy, Would you tell us a little about yourself and lung transplant? What is a single vs a double transplant?

Hello Hello Hello I want to live close to Mayo so I can visit everyday with patients, I had a Bi-lateral lung transplantAugust 21 2015 it doesnt feel like it has been that long getting close to being an old timer. In 5 months I will be a 5 year survivor my diagnosis was pulmonary fibrosis and emphysema. I was 62 years old when diagnosed and 63 when transplanted, I was hospitalized for the reason my disease progressed very quickly and my oxygen requirements could no longer be met at home 30 days after being admitted a donor was found my first grand daughter was born 4 days after transplant , life is grand , I love to share my experiences ,in fact I told my story at the North Dakota Respirtory Therapist convention 235 of them and me , so please contact me to share your adventure or if you questions I will be glad to talk with you