mitral valve an primary pulmonary hypertention

[barb]

Hi! This is my first post here. I have primary pulmanary hypertention and a mitral valve problem. The mitral valve was diagnosed about 10 years ago as being minor. Almost 3 years ago I was diagnosed with sever pph. The heart docs said my heart was not bad enough to be causing the pph.
I just had an echo aand it shows my valve is leaking more and is narrowing. I will see a cardioligist in the next several weeks. Does anyone else suffer from this problem or has had surgery to get the valve fixed? I'm very scared of what might happen if I was to have surgery

 

[JimL]

Hi Barb, and welcome! I had a stenotic aortic valve which was replaced with a St. Jude mechanical just over three years ago. I've had a wonderful recovery, but this is not the same as your problem.

Others have talked about these things, and they'll perhaps share their knowledge with you. Or you could search the forum for these things.

 

[Nancy]

Hi Barb-

Welcome to the site.

My husband has had three heart valve surgeries, and he also has PH. I can't tell you whether he had PH prior to his last mitral valve surgeries, since his PH was never revealed to us until after he had had his last surgery, and we found out about it quite by accident, and then found out that it was appearing in his echo reports for a while. His was in the severe category and he is now on Tracleer and doing well.

I don't know if you also go to the PHA website or not, but when folks there need surgery, they ususally go to a facility which can handle both problems, and some even have their specialist available during surgery.

This is something you have to discuss at length with your surgeon and also your anesthesiologist when it becomes time for surgery. And if it were my husband, we would now have to go to a facility which could take care of him if he got into trouble with his PH during or after surgery .

I believe you will have to be very flexible in your selection of surgical facility, since, as you probably know, not every hospital or doctor understands about PH, and how to handle it. Also, if you are on Tracleer, Flolan or Remodulin, you will have to go somewhere that stocks this in the pharmacy, and also knows how to take care of any Flolan emergencies.

PH people are very special.