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Afib, amiodarone and dual organ transplant

Heart Rhythm Conditions | Last Active: Nov 12, 2024 | Replies (8)

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@leara484

Hello, I have been down a similar path in the respect that my daughter had several arrhythmia problems, everything from Sick Sinus Syndrome requiring a duel chamber pacemaker, to A-Fib and NSVT along with having what we all thought was Hypertrophic Cardiomyopathy, turned out to be a very rare form of Glycogen Storage Disease called PRKAG2. She had a heart transplant at 22 and she also was on Amiodarone prior to her transplant. Amiodarone is a very potent drug and the half life of the drug is long. It caused hypothyroidism and restrictive lung disease in my daughter and you have to be VERY careful to stay covered up even on cloudy days as you can get burned pretty bad. One cloudy day outside taught us to never to do that again; my daughter ended up spending a day or more covered in cold wet towels from being burned! When my daughter was just three she came down with Juvenile Rheumatoid Arthritis and landed in the hospital at six due to internal bleeding issues caused by drugs; it was during that hospitalization we found out about all of her heart issues. I was a long life. I hope your daughter will do okay and know that I understand the fears that you have for her well being. Always remember that she has given you a gift; she has given you a strength that few mothers will ever know.

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Replies to "Hello, I have been down a similar path in the respect that my daughter had several..."

Thank you for the information. It is so hard to see your child go through all of this, even though she is an adult.