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    • Karen
      Participant
      Post count: 2

      My cardiologist didn’t mention PAH that is on my diagnosis report…that he wrote. My right ventricular systolic pressure was 43 mmHg on echo. The only other finding from echo is atrial ectopic tachycardia. I originally went to cardiologist because my blood pressure stays consistently low (which he dismissed) and I’m SOOO tired all the time. I have had shortness of breath a lot and just assumed it was because of my low blood pressure. Any advice is appreciated

    • Michael Knaapen
      Keymaster
      Post count: 4

      Karen, are you saying that your cardiologist wrote PAH on the diagnosis report but did not discuss it with you?

    • Karen
      Participant
      Post count: 2

      Yes…he discussed the atrial ectopic tachycardia (also on diagnosis report) but not the PAH on it

    • Lynn
      Participant
      Post count: 1

      I had a similar thing happen. I had an echo to check my heart function before a surgery. The cardiologist said everything was fine. My rheumatologist likes me to bring her copies of all of my tests, so I took her the echo results.
      She said it looks like you may have PH, you need to follow up with a Pulmonologist and have a right heart cath. I had the right heart cath and it confirmed mild PH. When I went back to that same cardiologist like a year later, she said, so, you don’t have PH. I’m like, what do you mean? The heart cath confirmed it, and I have been seeing a Pulmonologist that specializes in PH and he says I have it. She was like, well, yeah, but it is very mild. CRAZY!!!

      I switched cardiologist after that. My current cardiologist is very good. And his words were, even though it is mild at this time, that means that, even at rest, my heart, is working at least twice as hard as a person with normal pressures. Plus, it has to be monitored.

      If I were you, I would either find another cardiologist and or have a Pulmonologist review your echo,results. You need to have a right heart cath to confirm if it is actually PH.

    • Darla Stewart
      Participant
      Post count: 7

      I had the opposite happen. It was my cardiologist who actually did the tests needed for diagnosis although my pulmonologist tried to take credit. In 2011, I had my first episode with massive multiple PEs. No cause was found. There were no DVTs showing in any of the tests in the emergency room. 2012 – In appointment with pulmonologist and decide since we did not know cause and had discussed the risk of being on long-term warfarin, I would stop the warfarin. Back in hospital within two weeks with more massive multiple PEs. A few years go by and I am seeing a new cardiologist – one who would follow my heart health rather than say if I had an issue to call him. I was not recovering my lung health as I thought I would as the pulmonologist kept saying all the PEs were gone and the warfarin had dissolved them (lungs clear). Cardiologist ordered stress test, right heart cath, and a v-Scan. Abnormal, all valves leaking-not just my mitral valve as before PE episodes, and there were small indications that he had to talk with my pulmonologist to find out if new or old. That is when the Pulmonologist fessed up that the warfarin had dissolved the smaller PEs but had only shrunk the larger ones that were now causing Pulmonary Hypertension. I did some self-research and found this website. It showed me that a hospital/clinic out-of-my-state but that I trusted due to prior experience with my sons was associated and I was able to get a second-opinion appointment. He confirmed the PH diagnosis (CTEPH) and gave me further info. Although I still see my pulmonologist, I take what he says with questions and am following the cardiologist advice closer until I can find a new pulmonologist less than 2-3 hours away with more experience with PH patients.

    • Bunny Sharp
      Participant
      Post count: 1

      I am confused right now as how to best proceed. I was diagnosed in 2017 while in hospital and my current cardiologist said he felt he could not help me. The Pulmonologist in the hospital sent me to her partner who specializes only in PH. I changed cardiologist and here is my problem. My pulmonologist said I am in Group 2 PH due to my heart disease which I have had since in the mid 1990’s My cardiologist told me he didn’t agree and that he was certain that it was from sleep apnea. I went through a sleep study and was told I do NOT have sleep apnea (which I was certain would be the case). I do believe that my heart disease and A-fib are the underlying problem, but if my cardiologist is not doing ANYTHING to treat it, should I just change cardiologist again. When I go in every few months, he has my pacemaker checked and several months ago I had an echo done when I went to the hospital due to a mini stroke which he said was fine except for 50-69% blockage in right carotid. Stroke was on right side so this was not the problem. Right now, I truly trust my Pulmonologist the most and hate to change cardiologist, but not sure if I will get the treatment I need from him.

    • Darla Stewart
      Participant
      Post count: 7

      Bunny – you need to be able to trust in the care you are receiving or that added stress can harm you more. I am in Group 4 and for years I thought I might also have sleep apnea. I had a sleep study and it did not show sleep apnea but it did show I had nocturnal hypoxia (not getting enough oxygen at night into the blood). That made some sense as I breath shallow anyway. But it was also a diagnosis that came or developed after my PH diagnosis. I have learned that it is not a one and done thing – there may be some overlapping of symptoms in the groups. If either of the doctors are closed-minded to the possibilities, you need to consider a change in care provider for your own peace of mind so that you are getting the fullest treatment plan that you are able to get.

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