• Patricia DuBose posted an update 1 month, 3 weeks ago

    Well, today certainly ranks up there for being one of the worse days of my life. We arrived at Mayo-Jax at 8 AM, and after vitals were taken, we met with one of the tranplant doctors. He looked over and asked questions about Dave’s medical history and then told us how utterly hideous the surgical and post-transplant processes were and told Dave he had doubts whether his body could withstand the rigors of the surgery, rehab, then life-long medication regimen – primarily because of his weak heart and that he has had rather back side effects to steroids in the past. And that he did survive a transplant, it’s very likely that his quality of life would be bad .He told us (3 times!) that if Dave were his father he would counsel him strongly against transplant. He said that with 100% certainty he was sure the committee would reject him as a candidate, and he didn’t want to put us through the evaluation for nothing. He said, if anything, Dave would need a heart-lung transplant. When I asked him if Dave could test for that he said he’s too old – their cut-off is 55 and my husband is 61. Dave was also referred to UF-Shands in Gainesville (Florida) and we asked him if he thought it was worth even bothering. He said we should go for the second opinion – that it may be beneficial in giving us closure. I wish we had never been given this hope that transplant was even an option. I’m very sad today.

    • Hi @patriciadubose,

      Oh my heart ached for you when I read this update! First of all, I’m not going to sugar-coat it: that doctor sounds like an asshole. While he may be knowledgeable about transplant, outcomes and likely successes, ultimately he could have demonstrated far more compassion and empathy for what you and Dave are enduring and having to face. His behaviour would have turned me off from wanting to pursue a transplant at that center alone. Usually it is a good idea/best practice to obtain a second opinion anyways, however in this case, I’d absolutely recommend it. I know people who were denied at 3-4 centers and not accepted until their 5th and while that process exhausted them…. they are alive and thriving now! I don’t want to give you false hope because I don’t know your situation, but I am angry that you had to ensure this MD’s behaviour today. You know transplant isn’t a ‘walk in the park’, and it’ll be hardwork but lots of have endured that hard work and now have endured quality of life. I hate that he called the process “hideous”. Bottom line is as well, the doctor is NOT his father and it is just one opinion. I certainly respect MD’s opinions usually, but they aren’t God…. what if he is wrong? He also is not(!) able to confirm the committee would deny him and maybe they would at Mayo, but Mayo is not the only amazing hospital in the US. There are far more! I’d seek a second opinion (maybe even a third?), that is the only thing I agree with the physician about. I’m so sorry you had this experience today, how awful. Thinking of both you and Dave. Feel free to DM me or email me anytime, I am working through lung transplant workup now too.
      Char.

    • Hello Patricia, I agree with everything Charlene wrote. I know of people who were denied at several centers but are currently living a wonderful life. Please take doctors advice and go to the transplant center he recommended. I mentor a potential lung transplant patient and at first he wasn’t a bonafide candidate but he has since improved his ejection fraction and overall health. He is now a candidate but thankfully he is stable at the moment. Best wishes, mark.

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