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← Return to Pediatric Heart Transplant: looking for support as a parent of a teen
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Pediatric Heart Transplant: looking for support as a parent of a teen
Transplants | Last Active: Apr 12, 2024 | Replies (10)Comment receiving replies
Our son and family have experienced so many miracles since discovering his heart defect, many that have stumped his doctors. Yes, Amiodarone caused hyperthyroidism for him about two years ago. It required prednisone for a few months to settle down. Now his thyroid runs a little low, but not enough to require meds. His liver is showing signs of moderate to almost early stages of severe fibrosis. He has been listed for one month and four days today. I have a feeling at his next check up in April there will be talks about stopping Amiodarone to keep his liver from receiving further damage. If that needs to happen he will become inpatient and need either an LVAD or ECMO.
Replies to "Our son and family have experienced so many miracles since discovering his heart defect, many that..."
@amanda75ak, I am dropping in tonight to let you know that you are in my thoughts and your son is in my prayers.
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I've met a few transplant patients that had the LVAD prior to transplant and the one advantage They always seemed to say was it gave them time to get stronger and once a heart became available they recovered much quicker than I did. I also was in the Hospital from early December until transplant because they had to shut off my pacemaker and if needed would do it manually with a sedative. I had been shocked so much i could not get rest from the anxiety and the constant fear of a shock. It was what I believe a form of PTSD. So I was not a candidate for the LVAD but if your son is that may help a lot with being prepared for transplant.