A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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Does anyone here have Pulmonary Hypertension by any chance?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by rosie26, Mar 1, 2016.

  1. rosie26

    rosie26 Senior Member

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    As usual I am trying to figure things out. I have something going on with heart and lungs. I am going to the doctor in the next week to ask if I can get a specialist referral.

    I know pulmonary hypertension is serious and I need to get on to it if that is what I have.
    I just want to know what tests they would test me with for this. Can a GP diagnose it or do I need special tests for it. Also, what are your symptoms like if you have it? And what are you taking for it? Many Thanks.
     
  2. roller

    roller wiggle jiggle

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    viagra
     
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  3. rosie26

    rosie26 Senior Member

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    :lol: That could be interesting.
     
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  4. rosie26

    rosie26 Senior Member

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    Might not be great for the POTS though?:rolleyes:
     
  5. roller

    roller wiggle jiggle

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    viagra is awesome, when you feel bad enough.
    it improves blood flow and with this your overall wellbeing, energy and brain function.
    i am female and i found this a life changer.

    i only looked briefly into PAH.
    so, even if you are diagnosed with this i would think you will wish to find the cause.

    pah is very expensive in treatment and there is no cure.
    they are just doing a high-cost-high-tech life support, for what i understand.
    patients are going down a bad path.
     
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  6. rosie26

    rosie26 Senior Member

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    Well, thanks @roller for mentioning Viagra, I will write it down as something to think about. I know you aren't advising me. I will think things through and hear what the doctor tells me as well.

    I don't know what PAH means? I guess a part of that mean pulmonary hypertension. I don't know what the 'a' means though.

    Whatever it is that I have, it doesn't feel good and it feels serious. I have read up a little about it but it scares me reading about it and I have been putting off reading more because of that. But I cannot procrastinate any longer and I must check it out. I did read you that you can die within 3 years of getting it without treatment :nervous: I have felt like I have been dying for the last 15 years though so it's nothing new really.
     
  7. roller

    roller wiggle jiggle

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  8. bel canto

    bel canto Senior Member

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    PAH stands for pulmonary arterial hypertension. It can be primary, with no known cause, or secondary to some other condition such as autoimmune disease, blood clots in the lungs, and many other causes. It's usually a very serious disease but there are multiple treatments now available for it. I know many long-term patients who are doing very well.

    The gold standard for diagnosis is an right-heart catheterization, but echocardiograms are often used first to estimate pulmonary pressures. It's really important to find a pulmonary doc who specializes in ph once you are diagnosed. On the west coast, there are excellent docs available, and I'm sure that's true of the rest of the country.

    The best place to start looking for information in the phassociation.org. They will have up-to-date links. Beware of "old" information, as much of it is very outdated due to significant progress in treatment options.

    Best of luck in whatever path you end up on!
     
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  9. Kati

    Kati Patient in training

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    Hi @rosie26 i hope you see a proper dr so you can have an appropriate diagnosis, sending best wishes!
     
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  10. daisybell

    daisybell Senior Member

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    Hi @rosie26
    They do an Echo to test for pulmonary hypertension - which needs a referral to cardiology. I've had several of these as I am at risk for this. Both mine have been ok although on the high end of normal.
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    @bel canto I was curious who are the pulmonary docs on the west coast that you consider to be excellent for PAH or other pulmonary conditions? Can you please PM me the info if not comfortable posting publicly? (I assume you mean the west coast of the US vs. another country?!) Thank you in advance.
     
  12. rosie26

    rosie26 Senior Member

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    Thank you very much. It's so much nicer to read about a disease this way than other places on the internet.
    That's very insightful. I do feel like I have acquired asthma in the last year so that could be contributing to the hypertension. I am hoping it is not emphysema like they thought it was last year. I have a dry cough and I don't think you have a dry cough with emphysema. I might write my symptoms down here on this thread later.
    That's really good to hear.
    :hug:
    (For some reason this quoting system is getting out of order) I will remember that. Thanks.
    I'm in New Zealand, so will go through the free public system. Hopefully I get a good specialist.
    Thank you for that information @bel canto.
     
    Last edited: Mar 1, 2016
  13. rosie26

    rosie26 Senior Member

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    Thank you @Kati. Hope your doing ok.
     
  14. rosie26

    rosie26 Senior Member

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    Hi Daisybell, I did think of you after I had posted yesterday. I couldn't think whether it was cardiology or respiratory. That's great to hear they do an Echo first.
     
  15. Violeta

    Violeta Senior Member

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  16. rosie26

    rosie26 Senior Member

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    Appreciate you joining in @Violeta. I will take a look at that and think about it and let you know when I have. :hug:
     
  17. roller

    roller wiggle jiggle

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    from the study:

    BMJ Case Rep. 2013 Jan 8;2013. pii: bcr2012007938. doi: 10.1136/bcr-2012-007938.
    Thiamine-responsive pulmonary hypertension.
    Asakura T1, Kodera S, Kanda J, Ikeda M.

    Abstract
    The aim of this report is to call attention to a poorly recognised cause of pulmonary hypertension, thiamine deficiency. A 78-year-old woman without alcoholism or malabsorption presented with progressive dyspnoea and generalised oedema. Echocardiography showed signs of right ventricular overload with an estimated systolic pulmonary artery pressure of 50 mm Hg. Increased lactate concentrations prompted us to investigate thiamine deficiency. A 3-month history of picky eating, relying exclusively on white rice as the staple food, and low blood concentrations of thiamine confirmed the diagnosis. She recovered fully after 12 days of intravenous thiamine administration. Thiamine deficiency should be considered in all patients with pulmonary hypertension of unknown origin.
     
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  18. rosie26

    rosie26 Senior Member

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    I failed to get a referral to cardiology this morning. :aghhh::D I might have to go the A&E/ER route.

    I had 2 chest x-rays done last year, six months apart. The first x-ray in July 2015 showed
    - hyperinflated lungs
    - likey COPD
    - (and a quiet mention that
    I could have emphysema)

    The second x-ray was done 6 months later in Dec 2015 and that showed
    - normal lungs
    - note: mild sternum depression


    My lungs don't feel normal. Nor my heart.

    *Does anyone know whether Pulmonary Hypertension would show up in a chest x-ray?*

    My blood pressure tested normal and my pulse was irregular.
     
    Last edited: Mar 2, 2016
  19. Gingergrrl

    Gingergrrl Senior Member

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    Rosie, I am so sorry to hear that. Am hoping you can still get a referral to pulmonology or I guess go the ER route.

    We are the opposite in that my x-ray was normal but PFT tests showed lung restriction and that I cannot inhale a normal volume of air.

    I just spoke with someone who knows a great deal about PAH and she said that the gold standard test is right sided heart catheterization but there is info that can be obtained from an Echo. I checked my last echo from Dec 2015 and in the Doppler section it lists the "Peak Pulmonary Artery Pressure" and mine was 34 mmHg :eek:. Normal is 14-25 and even with exercise it should not be above 30 so mine is high and actually could be PAH.

    I have an appt at a very good pulmonary clinic in two weeks and will let you know what I learn. My cardio was not helpful with this matter at all. As scary as it would be to have PAH, I would be thrilled to have a diagnosis of something that explains my severe shortness of breath. Am hoping to figure this out soon and hope that you do as well.

    ETA: I do not think that PAH can be diagnosed from a chest x-ray but I guess the x-ray might show if the right side of the heart is really enlarged? From my Echo, the right side of my heart is not enlarged and has totally normal size, wall thickness, and function. But the PA pressure is so high, that it really makes me wonder.
     
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  20. rosie26

    rosie26 Senior Member

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    Thanks Gingergirl. It seems I will have to go to A&E and hopefully get fully tested there. Yes, I find it very uncomfortable lying down, do you? And talking lying down is so exhausting. I hope you haven't got PAH but I know what you mean in that it would be great just to get an answer for what it is and then start the right treatment. I would appreciate hearing how you get on, but no pressure to do that though.
     

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