Afib, amiodarone and dual organ transplant

I cannot help, sorry, but please be patient. In can sometimes be a while before someone sees your post and responds. You 'should' get a response within a day or two at the latest typically.

Is her liver already compromised by amiodarone, or is it a separate issue with that organ and it might also need to be replaced?

Liver is failing because of the Fontan circulation. She failed Tikosyn and it is not safe to perform another ablation at this time. The last option is the Amiodarone and my fear is that this will damage the liver further 😔

Shucks. The major organs can all suffer due to amiodarone, but I seem to recall that the lungs are the more serious problem if the veins develop hypertension. I was on it briefly when my first catheter ablation failed. I had atrial fibrillation, and soon had an EP willing to try to stabilize my rhythm by ablating the tissue around my pulmonary veins where they empty oxygenated blood coming from the lungs into the left atrium. This is where 85-95% of all fibrillation impetus comes from...the pulmonary vein ostia or antrum. But, I was in fibrillation six days after the first ablation, and after consultation with my electrophysiologist (EP), the internist in the ER put me on amiodarone. I wasn't pleased, but it did the trick. Luckily, only eight weeks on it, although I was soon again in AF.

I wish I had some wise counsel or experience to help you, but hopefully your daughter's organs will hang on until she can get the 'nod'.

Thank you. She is on Tidalafil for pulmonary hypertension so, yes, this is also a concern that her lungs will be affected. There is just so much to be concerned about and watch for that my head is spinning.

My husband had a massive left ventricular heart attack causing stage 5 chronic kidney disease almost 4 years ago. After a double CABG he started failing, developed afib and aflutter along with advanced congestive heart failure. He was put on amiodorone, Eliquis and a host of other meds. I was reassured by both his cardiologist and nephrologist that the risks of kidney and liver damage from the amiodorone is from long term use, over 6 or more years. He was on it for approximately two years while being evaluated for placement on a heart and kidney transplant. During evaluation he was diagnosed with head and neck cancer and underwent radiation and monoclonal antibody therapy which disqualified him for transplant for 5 years at which time he’d be over 70. Soon after he had a watchman placed in his heart to stop the risk of blood clots and was taken off both the amiodorone and Eliquis a few months later. Today he is able to golf at least once per week and is enjoying life. There is reason to hope. I wouldn’t worry too much about the amiodorone as long as she is being monitored.

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.

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

Yes, you are right so, in my case, I started to look and find the good that came out of everything we went through as a family. Through all of the stress and worry, I think we all came out as stronger individuals.