• Bill Jones posted an update 1 week, 6 days ago

    Has anyone had any experience with the Mayo Clinic in Rochester, MN? My wife has been in contact with them, and has made an appointment for me in later March. I understand it is about a 3 or 4 day assessment physical. We are hoping to find a direction that may help my condition. If transplant becomes the only alternative I would like to know what the overall survival rates are.

    • Hi Bill. I am going to post this in the Treating PH forum so that more of our members will see it.

      My son is 5 years post heart and double lung transplant. He is doing well. I look forward to continuing this conversation with you!

        • Oh Thank you Colleen. Eventually I will get the hang of this. That great news for your son. May I ask what his age is?
            • No problem. I just want to make sure people see your questions.

              My son became symptomatic at age 6 but not diagnosed until he was 8. He was 14 when he received his transplant and is 20 years old now.

              FYI: it is more common for PH patients to only receive a double lung transplant because they have discovered that the heart has the ability to repair itself after the body receives healthy lungs. My son’s heart was too severely damaged so he unfortunately had to have both.

                • Well he sure has been through alot for his age. And you also have been through quite a bit. my problem is I just turned 65 this week, have been dealing with the health issues for about 5 years now. My oxygen requirement has increased dramatically. The transplant idea was alway mentioned, but have been taking it at a slower pace, in hopes of a new medicine or treatment. It is a big decision for anyone, but at my age I’m not sure.
                    • I’m familiar with waiting for a new medicine or treatment because we did that for as long as we could too. I would add to that, waiting for advancements in transplant and dramatic improvement in survival rate. What I suggest is, if your team will approve it, at least go through the extensive process that is needed in order to list you. Go through the blood work, tests, paperwork, etc. so that when/if you need to be listed – all of that is already completed. It is a huge decision and I am so sorry that it is one you might have to make!
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