Hi,I am 32, I have familial (lamin A/C) dilated cardiomyopathy.My heart is not that dilated (about 6 cm) but stiff. I went quite good for some years, but suddendly my ICD fired twice in a week: I had sustained V-Tach.Being very very bored from PVCs adn bigeminys, and under the risk of Vtachs,cardiologists decided to switch me from carvedilol to sotalol (I do not tolerate amiodarone).It went fine for arrhytmias.But my energy level went down.My blood pressure went down. And in less then two years I went from an heart's ouput equal to 5 litres/min, to 3 litres/min.Other relatives went downhill even faster then me so, sotalol (or lack of carvedilol) is not beleived the only responsible of that. Now seems unuseful to go back to carvedilol: heart seems not remodable anymore or anyfurther, but just need to be "changed". Some questions:
1) Do you have experiences of patients on sotalol who, put on carvedilol, could re-gain some energy and heart's ouput? Would you do that move on me? Quite risky, seems.
2) I tried under suggestion of a cardiologist to reduce ACE in order to gain some blood pressure. It did not work.Actually after a few days I experienced pain to my liver and stomach dilations. Blood work showed that liver and kidneys are suffering. So I am bit decompensated: but I did NOT gain weight! Is that possible? Clearly I went up again with ACE. Should I try go upper now? They are so effective on my heart's output, but difficult to tolerate. I am at 7,5 per day of ramipril and 25 mg of losartan.
Thank you.