Pulmonary doctor the Cardiologist keep fighting over me

[Jody71572]

Going back and forth between the lung doctor and the heart doctor.  I had so many test ran that finally they diagnosed me with Primary Pulmonary Hypertension.  Thursday I had a right heart cather that showed I do not have PPH.  We were going to fix the valve but they thought it would damage my lungs. In the mean time, I can't breath, my heart feels like it flip flops in my chest, chest pains, dizziness, swelling in my leg, fatigued and no activity at all due to the symptoms  through out the day.  The lung doctor says fix the valve and the heart doctor says fix the lungs. What am I to do.  There is a leak but they dont feel it's big enough to do surgery.  They found the pressure in my heart to be high and Im on meds but it's not helping my symptoms. Help!!!!!!!

[mrwjd]

Do you know if the option is to replace the mitral valve?  If so, it is kind of a big deal, and they will want you in as good shape as possible when you start.  

It might help knowing what to ask if you read some posts on valvereplacement.com, in addition to everything about mitral valves valves on this website.  

[Jody71572]

180 was the pressure in my heart due to my leaky mitral valve.  That was what I was told when I had a cardiac catherization last year.  I have high pressure behind my leaky valve.  I don't have high blood pressure the way we all know it to be..  The leak in my mitral valve was not as big as they thought in comparsion with my symptoms but when they did the CC last year they saw why I was having those symptoms because of the pressure being so high in my heart. I was also told I have a stiff heart.   As of Thursday  my PAP was 33 and I was told it should  be at 25.  They did not feel that the pressure being at 33 was Primary Pulmonary Hypertension.  So now I wait for the pulmonary doctor to come back from vacation and set up an appointment to do more extensive testing.  I feel they should fix the leaky valve then I can  go back to how I was two years ago.  My pulmonary pressure is not extremely elevated just a little due to the leak in my valve.  Fix the valve save the lung.  My pulmonary doctor feels the same way but the cardiologist feels it's the lungs.  Everything comes back to the valve.  Thank you for letting me vent.

[maggiemag]

I was talking about the pulmonary artery pressure.  It can't be 180, or you wouldn't be here!  180 I bet is referring to your blood pressure, which is elevated.  What valve are you talking about?  Those meds are for high blood pressure.  Many times it takes a bit of trial and error to find the right combination of meds to treat high blood pressure.  How long have you been on the meds?  A right heart cath would definitely say whether or not you have PH, so you must not.  Get all your reports too see all the data, like the mean pulmonary artery pressure on the cath.  Is your pulmo just a lung specialist or is he a sub specialist in PH?

[Jody71572]

I believe the cardio doc said my pressure went to 180.  Your talking about the pressure in my heart, right?  The pulmonoligst is a specialist, I actually saw two of them along with two cardio doc.  This morning  my chest is in so much pain and I am so dizzy.   Im on HCTZ AND AMLODIPINE, THIS IS MY THIRD MED.

[maggiemag]

What exactly were your pressures on the RHC?  What meds are you on?  What valve are you talking about?  Is your pulmonologist actually a PH specialist or just a pulmo?  It can make a huge difference.