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Heart & Blood Health | Last Active: Apr 10 6:51am | Replies (16)

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@vg1234

vg1234 | @vg1234 | 2 minutes ago
I was diagnosed by another hospital when I was 69 with Cardiac Sarcodosis. I was told I could use this as a bridge to a transplant. I went to another doctor for something totally different and they saw in their notes I was on destination Therapy(No transplant) I never was told this designation. I was told by others in the field they don't like to take people over 70, which at the time I wasn't. This is what spurred my question to you. Any info as far as getting on a list will be helpful. I feel I was given bad information

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Replies to "vg1234 | @vg1234 | 2 minutes ago I was diagnosed by another hospital when I was..."

@vg1234, It is so disappointing when doctors do not explain diagnosis and treatment/therapies to the full extent. My dad was treated at a hospital in Cincinnati, Ohio. There are two hospitals in the area that perform heart transplants. I have very mixed feelings on transplants after a certain age. I do strongly encourage extra testing/exams and lots of painfully honest questions and answers. This is not a simple procedure, recovery or decision. Transplant is definitely life changing and hopefully for the best. I will be totally honest and this is from my dad's experience and mine as his daughter and caregiver. I am very aware that everyone experiences different recoveries, some will have great success in their recovery and will live a full life, while others will not. His cardiac team were wonderful medical providers and we had full trust in them. My dad's experience was very negative. He had additional medical problems that were starting to present but went unrecognized. Looking back we and his team seemed to contribute any symptom he had as heart related and never looked at the possibility it could be something else. Our process was rushed because of his age and I don't feel the testing was extensive enough. Had he received his Parkinson diagnosis prior to listing he would not have qualified for transplant. Our family feels he would have had a much better quality of life without the transplant. We know he probably would have not lived as long but he would have been happier. His life was never the same and he was never happy again. My dad passed six years and one month after transplant in 2023. (Six years post transplant is considered a success without regard to quality of life) I have had a year and a half to look back at things more objectively on his case. My dad was extremely social, went anywhere he wanted, traveled, played golf a few times a week, lived alone and drove up until his surgery. Post transplant, he was unable to walk without the use of a walker, could no longer drive, never played golf again (which was everything to him) and could not live alone. The surgery took a lot out of him and seemed to progress the Parkinson's. We made arrangements for someone to be with him the first few years. As his Parkinson's progressed we were forced to move him to an assisted living (only a few months) and then to full nursing care because he needed more care. My nonmedical opinion is extensive physical testing needs to take place to qualify a patient to list for transplant. There are lots of blood tests run, a very quick meeting with the transplant psychologist, and a meeting with the social worker. There needs to be an extensive, honest physical exam with a physician outside of the transplant team. I with you the very best, I am certain this has been challenging time.