Is it possible...please read! (Heart disease and PH)? -

I was diagnosed with pulmonary hypertension four years ago. I was diagnosed with Restrictive Cardiomyopathy 18 years ago. I have lead a relatively normal life; always believing I was different, couldn t tolerate exercise, etc. A couple of years ago I became pregnant. Everything went well (I hardly had any morning sickness) and I ended up delivering prematurely because the placenta matured, but thank God both the baby and I came out fine; he is healthy, I had an emergency C-Section with general anesthesia and everything went well. I am grateful for this blessing. I have read that it is very unlikely to survive with any of those two conditions, let alone both. I guess I m just wondering if there has been a case where either of those conditions have gotten better on their own (I have never taken medication) or if it possible to be misdiagnosed for so many years. I ve tried to find people in similar situations but no such luck. Any feedback or opinions??

Hello, It seems to me that your cardiac disease is a likely cause of your pulmonary hypertension. This is a common occurrence because blood flows from the right side of the heart – to the lungs – to the left side of the heart. If you heart is ‘restrictive’ then you can see a volume or pressure overload leading to increased pressure in your lungs resulting in pulmonary hypertension. Therapy for secondary pulmonary hypertension is targeted at the underlying cause and its effects on the cardiovascular system. I don’t think this sort of thing will go away on it’s own, but I do believe treating your restrictive cardiomyopathy could help with your pulmonary hypertension. The goal of treatment in RCM is to reduce symptoms by lowering elevated filling pressures without significantly reducing the cardiac output. Presently, no drugs selectively enhance myocardial relaxation. Therefore, current therapy consists predominately of low-dose diuretics to lower the preload. I hope this helps!

Well, first off you are lucky if you haven t needed to take any meds for either before. I know that PH and Restrictive Cardiomyopathy isn t something you will grow out of. I wish I could say you could. My daughter experienced PH after her first heart surgery, doctors say it was from the trauma of her coding many times. I have also thought if she still has PH but her cardio said no. It is a possibility that you were misdiagnosed, who diagnosed you? What kind of Dr? I would get a second opinion. Also, I am wondering what kind of symptoms you have? Look up PH on the web, I had found a PH foundation (I don t have the info still) and call someone there and just talk with them. I spoke with someone there and they were really nice and knew alot about PH. Normally lung and heart issues come together. My daughter is being tested for PCD Primary Cilia Diskania (SP?) because she has mucus issues, chronic lung disease, ect.. Like I said it doesn t hurt to just get another opinion because it has been a while since you got the dx. Hope that helps a little.... Good luck