I have Marfan syndrome and have had an A-type aortic dissection at the age of 28, followed by an urgent surgery and was implanted an artificial aortic valve (Bentall surgery). I also have a "minor" mitral valve prolapse and minor mitral insufficience, otherwise my heart muscle and other valves are OK, just had an ultrasound a few weeks ago, at the age of 39. From the operation onward a very high gradient of 75 in the aortic valve was recorded, but doctors say it has nothing to do with the rhythm, which is my main problem. I have extremely frequent irregular beats, like: beat, pause, beat, pause, beat, beat, pause, pause, beat, pause, beat, beat, pause, pause... It is EXTREMELY bothering and it prevents me from having a relatively normal life. I admit am both a smoker and a pot smoker, but I point out that for about a year I haven't touched any of those (that was about a year and a half ago) and the symptoms just haven't disappeared. It was especially hard during the first few months after surgery, during that time I also did not touch any drugs, tobacco or alcohol (also for more than a year). Doctors tried to aleviate the problem with Bloxan and Xanax but they were ineffective, (I especially hated Xanax for making me feel drowsy) so after a while I quit taking them both. I was hospitalized several times after the initial surgery because of rhythm problems. But some year after the surgery the problem lessened to a degree that I only felt a few "jolts" a day so life became more or less normal, and I am also decently physically active, I walk a lot and I am up on my feet quite a lot during working hours. But I of course had to quit basketball and running and I never touch coffee or black tea and very rarely drink alcohol.
A month ago (being a smoker again for quite a few years now, both pot and tobacco) these supraventricular extrasystoles became intolerably frequent so I had to be hospitalized and these problems were recorded on a Holter monitor which registered both - very frequent supraventricular but also some ventricular extrasystoles. I was introduced Concor (another beta blocker) and, once again Xanax. After a week in a hospital the problem was, well, not solved, but the extrasystoles went back to the "normal" count of "a few per hour or per day". After a few days out of the hospital the problem reappeared quite violently and it just will not stop. Once again, I went to a cardiologist which now also measured a very high (for a marfan) BP of 146/88, so I was introduced Micardis to lower the pressure. Of course, the rhythm is still very irregular, eventhough I only smoke about 5 cigs a day and no pot at all. The doctors say the treatment they prescribed was the best they could do. Live with it, they say.
I dont want to sound like a whining child, but this is really destroying my sanity, I feel I'm going crazy because I REALLY feel each and every one of those irregular beats. I do not know how I will be able to work, if I already have problems sitting or lying down reading a book.
The problem is I come from a small country and there are not so many cardiologists around. The ones that treat you in the central public hospital also work after-hours in some private clinics, so there is virtually no chance of getting a second opinion elsewhere in the country and I can not afford going abroad which of course the health insurance will not cover.
I would be very grateful for any suggestions and help. Thank you.
Sorry to read you've had so much heart trouble and at such a young age. Clearly your story tells us: stop smoking and all exotics, including caffeine.
There are others on this forum who have experience with ongoing severe rhythm problems, and this response will "bump" your post back to the top, improving chances that you'll get a helpful response.
I have about, still working the decision, on living with AFib, but it isn't nearly as troublesome as your situation. I too have undergone open heart surgery, to repair my mitral valve. That was just over a year ago. That surgery and a maze procedure didn't fix my AFib problem.
Your comment on health care is somewhat as I understand the case for all countries that have government provided health care. The USA is on a path to that, not sure when or how similar to your country, but I can say for those of us with good health insurance we have it rather "well" here in the USA as things now stand. All this said, you may want to try one of the heart forums in the MedHelp family. You may be able to get a professional second opinion, limited as it is given it is based on only your written input/question, for a "small" fee. If interested, click on "forums" at the top of this home page.
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