confusing diagnosis 2018-07-25T14:21:15+00:00

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  • clark
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    Post count: 2
    #8243 |

    my pulmonary doctor did my right heart cath nov 2017. when i got out of the procedure he said everything looked good. in feb 2018 at a follow up visit he told me the right heart cath pressure was 27. that i was “at risk” for PH. this sounded kind of odd to me, i have never heard or read about anyone “at risk” for PH. as far as i have understood, either you have it or you don’t.
    i just want to know other peoples opinions

  • Ava
    Participant
    Post count: 29

    Hi Clark,
    PH can be caused by a great number of other conditions. Problems with the left side of the heart or lung problems (eg. COPD) are known causes of PH, and so can put you at risk of developing PH. Then there are things like Connective Tissue Disease, Lupus, Thyroid problems, sleep apnea, liver problems, a history of certain legal/illegal drugs or medications, HIV, living at high altitudes, a history of blood clots, or a number of other factors. Any of these things can put you at risk of developing PH.

    When PH is diagnosed it is categorised by five different types (Groups 1-5), depending on the cause. Each of these categories has further sub-categories that details the specific cause. The treatment protocols for PH are then determined by what kind of PH you have ie. what PH Group you belong to (depending on the cause of the PH). It’s very important for the cause to be determined and the right Group identified as the treatment for one kind of PH can actually make a person worse if they have a different kind of PH.

    Having a heart or lung condition that is getting worse would be one reason a doctor may suggest you are at risk of developing PH. On a positive note, any improvement in that pre-existing heart/lung condition would lessen the risk of you developing PH.

    I hope this has helped somewhat and given you an idea of what questions to ask of your doctor at your next visit.
    Best wishes,
    Ava

  • Patricia
    Participant
    Post count: 32

    Clark, I found this on the website http://www.heart.org:

    “Pulmonary blood pressure is normally a lot lower than systemic blood pressure. Normal pulmonary artery pressure is 8-20 mm Hg at rest. If the pressure in the pulmonary artery is greater than 25 mm Hg at rest or 30 mmHg during physical activity, it is abnormally high and is called pulmonary hypertension.Jan 29, 2018”

    Since right heart caths are done with you at rest and your pressures were 27, I would say that you DO have pulmonary hypertension. Although it is mild, do have it taken care of as this is a progressive disease and the heart can become enlarged if not taken care of. Good luck.

  • clark
    Participant
    Post count: 2

    well i do have asthma and my dr. looked at x rays of my lungs and set up testing for Copd.
    i also have heart problens. and the list goes on.
    i will be see him soon, is the training for a PH specialist more so than a regular ppulmonary dr, ?

    • Ava
      Participant
      Post count: 29

      Yes, you ABSOLUTELY need to see a PH Specialist, especially if your asthma has gotten worse in the last year or two. I had childhood asthma, and before my diagnosis I had any number of doctors and specialists tell me my breathing problems were asthma. When I saw my PH Specialist, he recognised my ‘asthma’ was actually shortness of breath caused by PH – and I haven’t needed to use an inhaler since!

      Left heart problems are a bit more complicated. They are a well known cause of PH and the treatment in that case involves improving the left heart problem (which in turn will reduce the pressure in the Pulmonary Artery). The reason is the ‘mechanics’ of PH (what’s physically happening in the heart and lungs) is different to PH caused by other reasons.

      Similarly, if you’re found to have COPD or other lung problems (eg. Sleep apnea), the mechanics are different again, and the treatment tends to revolve around improving lung capacity.

      I have Idiopathic PAH and my PH Specialist is a cardiologist, because by the time I was diagnosed I had a lot of damage to my Right Heart (my lungs are fine, apart from shortness of breath as a symptom of PH). Some PH Specialists are Pulmonologists and some are Cardiologists – but the best ones will work with a kind of inter-disciplinary team so that you’re covered from all angles (I get sent for regular lung function tests). If you have other health problems, it will definitely require a PH Specialist to conduct tests and determine the cause of your PH – because as I keep saying, the cause will determine the treatment.

      I would definitely push (and push hard!) for a referral to a PH Specialist. Early in my treatment I had a regular cardiologist make me very sick, because he adjusted my medication in a way he would for regular people – luckily I contacted my PH Specialist (3 hours away) and he corrected things (I’ve since learnt to contact my PH Specialist if I have a problem and not rely on anyone without PH experience).

      Good luck, and please keep us updated!
      Ava

  • Patricia
    Participant
    Post count: 32

    is the training for a PH specialist more so than a regular ppulmonary dr, ? ABSOLUTELY!!!!!

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