• Have You Been Diagnosed with Exercise-Induced PH?

    Posted by jen-cueva on May 3, 2020 at 9:26 am

    @carol-alexander asks about exercise-induced PH. Some PH patients have increased PA pressures only with exertion or exercise. This is referred to as exercise-induced PH. For some, This can be confused because their exercise is merely walking a few steps.

    Some PH doctors often exercise testing like an ECHO or heart cath with exercise. I have heard of some using a bike that you pedal with your feet. Others I have heard use saline bags that you lift with your arms during a heart cath.

    I am sharing some information that PHA offers on this topic. Has anyone here been diagnosed with exercise-induced PH? If so, please share your experiences with @carol-alexander. Thanks.

    Colleen replied 3 years, 10 months ago 5 Members · 12 Replies
  • 12 Replies
  • jimi-mcintosh

    Member
    May 5, 2020 at 10:48 am

    If I am walking on level ground, even pace or sitting my PH numbers look GREAT, , slight include, lift something, mild exercise and they plunge. Took forever for my doctors to accept that this was not excess fat, lack of effort or laziness. I have exercised or stayed busy my whole life, now a short walk, mild exercise, I am done.

    I think the measurement tools to diagnose PH need to be based on what the patient experienced. No one in their right mind walks around with excess weight or sits on their bottom all day. About the time they started listening, the physical damage has been done.

    “I Live In This Body, With This Disease, Please Listen to Me”

  • jen-cueva

    Member
    May 5, 2020 at 1:01 pm

    Oh @jimi, as I read that, I could feel the frustration and pain. My pressures were never sky-high, as some PH doctors say most of their patients were. I was far from 100, but I was also far from normal.

    While I was not diagnosed as exercise-induced PH, I only had “mildly” elevated pressures to some PH doctors. I was fortunate to have a PH doc who listened to me and looked at my symptoms and other signs for PH. He did not only look at my pressures. I certainly did fit the PH patient as far as the elevated pressures at rest, but they even are much higher with exertion.

    I agree that the tools are just that. We are humans and live inside these bodies. We know that something is wrong and often, too many are told they are too fat or lazy, just as you mention. Sadly, many PH docs want your pressures to be near 100 before they treat you. Well, if we all waited until then, we may not be here today.

    I have heard this story all too often, it is not just you, Jimi.

  • sherman-jaffe

    Member
    May 6, 2020 at 9:11 am

    I was diagnosed 6 years ago and after years of tests and several experts I finally found a group of PAH Doctors that have done me some good. The problem is exercise induced PAH has not been studied enough. I been told “something else will kill you first” by a famous expert physician as if my malady was not serious enough for him to treat. Other experts tell me the test results are “not so bad”. Well, it’s serious and bad for me and you. So keep on trying and search out doctors that will keep on trying to help you. I am on Uptravi and Sildanifil.

  • jerri-modrall

    Member
    May 6, 2020 at 12:56 pm

    Yes. I also have CTEPH—but over the last 18 months, my self esteem has taken a nose dive because no one believed me—-said it was weight, I was breathing right, (I’m a trained singer, believe me—-I know how to breathe!). It has been so heartbreaking for me.

  • jen-cueva

    Member
    May 6, 2020 at 1:08 pm

    Hi @jaffesj, welcome, and thanks for sharing your experience. I agree this subset of PH patients has not been studied enough. It often is a dangerous mix when patients are told to go on with your life like it is nothing.

    You are certainly not alone with the frustrations with some doctors. I always tell people to look around and find a doctor that you work well with. Your life is in their hands.

    I am also on Uptravi and Revatio(sildenafil). Are these meds helping your symptoms? When did you start Uptravi?

    Again thanks for jumping in and sharing your experience. I am sure that @carol-alexander will appreciate all of these comments.

  • jen-cueva

    Member
    May 6, 2020 at 1:15 pm

    Hi @modbod115, I am sorry to hear of your frustrations. It certainly impacts our mental health when the medical staff does not take our concerns seriously. I am hopeful that you can find a medical team that takes your concerns seriously.

    You mention that you have CTEPH, did you have the PTE surgery? If so, has that helped? What type of singer were you?

  • jerri-modrall

    Member
    May 6, 2020 at 1:41 pm

    Thank you for writing back. I have not had the surgery. I was scheduled to go out tomSan Diego for an evaluation, but that was postponed due to COVID-19.

  • sherman-jaffe

    Member
    May 6, 2020 at 3:16 pm

    Revatio six years. Which I don’t think helped my PAH that much but quite frankly was great from my wife’s perspective and there was nothing else offered. Uptravi for six months. The side effects are obnoxious and titrations are a chore. Amazingly,cannabis micro doses alleviated the headaches(legal In Illinois). What really got me motivated in finding treatment was my Cardiomegaly (result of PAH)and the Doctor that said “the human heart is not designed to get that big-it just stops” Both drugs together help a lot.

  • jen-cueva

    Member
    May 6, 2020 at 3:36 pm

    Oh no, @modbod115, I am so sorry. I know that so many have had important procedures and surgeries put on hold because of COVID. I am sure that this is not helping your frustrations. I do know several PH friends who have been to San Diego to have PTE surgery in the past, and they are feeling much better after that.

    I hope that soon we will all be talking about life after COVID. Keeping you in my thoughts and please know that we are here to support you. Hang in there.

  • jen-cueva

    Member
    May 6, 2020 at 3:44 pm

    Oh @jaffesj, I am happy that at least your wife notices some benefits with the Revatio. I have been on Uptravi for several years now. The titration was the most challenging part. I know some who were unable to go past a certain dosage because the side effects outweighed the benefits. If you are still titrating and have weeks where the titration is too much, ask your PH team if you can back down to the previous week for an extra week or longer to give your body time to adjust to the medication. Our bodies are so different.

    You mention headaches that your cannabis helps, is this the worst side effect for you with titrations? I am grateful that cannabis is legal there and is helpful. I know PH patients in other states who have benefited from cannabis, too.

    I am grateful to know that this combination is effective in helping your PH. It is working well for me, too. I am at the max dose of Revatio and Uptravi.

  • Colleen

    Member
    May 6, 2020 at 6:49 pm

    @jaffesj first off, welcome. It’s great to see you jump right into the conversations. My son took Revatio for 5 years. It did help him but he was also on a triple therapy. Sometimes it does take a combination of PH drugs to do the trick. Migraines have always been an issue for my son, especially during titrations. I’ve heard good things about the micro dosing and I’m happy for you that it is helping.

  • Colleen

    Member
    May 6, 2020 at 6:56 pm

    @modbod115 I am so sorry that you weren’t believed for so long. That is frustrating and sad to say, a common occurrence with these rare diseases. To be told your symptoms were probably weight related must have really hurt. I’m so sorry to hear that your surgery has been postponed. Have they given you any idea of when they might be able to get you back on the books? Probably too difficult to even estimate right now. How are you feeling? Have you been told what to watch out for and when to go to the hospital if symptoms worsen?

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