Diagnosed in 2011, suddenly I'm really sick 2018-07-25T14:21:20+00:00

Home Forums General Discussion (Public Forum) Diagnosed in 2011, suddenly I'm really sick

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  • Marjorie
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    Post count: 3
    #8586 |

    Yesterday saw a specialist in PH at UCDavis 2 hours away and expected new meds. Instead I was told I have heart failure and no pill was going to help, that he was extremely concerned for me. I was told to get a new heart catherization, to be hospitalized for removing 20 lbs of fluids, that the blood pressure meds I was on were worthless and he expected aorta stenosis. I was sent away with no follow up appointment. He said he would be in touch if I qualified for some trial. I also have been diagnosed with severe COPD 8 months ago and put on 24 hr oxygen. I see my cardiogist Friday. Meanwhile I am confused and kinda depressed.

  • Ava
    Participant
    Post count: 29

    Hi Marjorie,
    Can I ask what kind of PH you were diagnosed with? In other words, the cause of your PH?

    It’s true that some kinds of PH cannot be helped by meds, so I’m not sure if that’s what your doctor meant. But it’s NOT true that Heart Failure can’t be treated. At diagnosis I had severe right heart failure and was hospitalised for about 3 weeks, carrying around 15kg of fluid. At that stage I couldn’t walk across a room without wanting to pass out.
    Six months later I could walk a couple of kilometres.

    Removing the fluid will, by itself, help improve your condition. It should also help your breathing. I’m a bit concerned that your doctors weren’t monitoring your fluid levels (or working with your primary care doctor to do so) or giving you diuretics as part of your treatment. What medication have you been prescribed for your PH?

    I’m not sure what blood pressure tablets you take (it sounds like you may have problems with your left heart?) but PH often causes lower than normal blood pressure. So if you previously had high blood pressure, that may no longer be the case.

    It sounds like you need someone to explain exactly what is going on with your different health problems and how they affect each other. Is it possible to ask your cardiologist for a referral to a different PH Specialist? I’m in Australia so not familiar with your area, but perhaps others could recommend a PH Specialist near you.

    Good luck on Friday and please let us know what your cardiologist says (don’t forget to make a list of questions!).
    Ava

  • Marjorie
    Participant
    Post count: 3

    Hi Ava. I actually do take a diurectic, bumetanide, which replaced lasik because that wasn’t working as well. I have some kidney damage from diabetes so have to watch diuretics. I believe I have PAH as my arteries are affected. I have stiff heart. I take Coreg. I also have high blood pressure which continues to be an issue with my pulmonary hypertension. By telling me no med could help, he meant there was no magic pill, I think. He didn’t like what I was prescribed:Coreg or Isosorb Din in particular. I do have a pulmonologist but he is just for my COPD, telling me my cardiogist would handle the pulmonary hypertension. He just saw me once last November, said I have severe COPD then gave me an appointment for 6 months later. I see his PA next week. The UCDAVIS pulmonologist had old records from 2014,yes, shocking which is why he needs a new heart catherization. I see my cardiogist tomorrow and hope I get help with these new concerns.I have made a list! Hes good, has been helping with the fluids. I see him monthly. Thanks for reaching out, Ava

    • Ava
      Participant
      Post count: 29

      Hi Marjorie,
      It sounds like your cardiologist is going to be your best bet – especially if you have a good relationship, which it sounds like you do.

      I’m not a doctor, but it sounds like you have PH due to left heart problems (just from the medications you take), which would make you Group 2. (PAH is Group 1, wherein the Pulmonary Arteries are the first things affected). Group 2 PH still involves the arteries, but the cause is slightly different – basically, if your left heart is not working as effectively as it should, some blood ‘backwashes’ into the blood vessels in the lungs, causing higher pressures in the Pulmonary veins (leading from lungs to heart) and eventually higher pressures in the Pulmonary arteries (leading from the right heart to lungs)…ergo, Pulmonary Hypertension.

      I’m not familiar with the meds you take, but a quick check shows Isosorb Din is a vasodilator. Your PH Specialist may not have liked it because by dilating the arteries in your lungs, it basically makes it easier for more blood to be backwashed through the lungs, which in turn will cause higher pressures in the Pulmonary arteries.

      But as I said at the start it sounds like your cardiologist is the person to see – Group 2 PH is treated primarily by focusing on the left heart problems because the more efficiently your left heart works, the lower your Pulmonary Artery pressures.

      I understand how challenging (and frustrating!) it is when every part of your body seems to be involved and when changing one thing can affect everything else – so I hope you can get some good answers from your cardiologist. Hang in there and let us know what he says.
      Ava

  • Marjorie
    Participant
    Post count: 3

    I saw my cardiogist yesterday. He is referring me back to UCDavis as he feels they are my best bet to improve my current situation including possibly get into a trial. I can bately walk across my living room even on 3 liters of oxygen. I am now waiting for a bed to open up. I appreciate very much you responding to me Ava. You helped clarify things for me. I will keep you posted. I am so glad I found this group.

  • Leigh Squiers
    Participant
    Post count: 5

    Check out Thorton Hospital in San Diego. Best in the country for your issue. Don’t hesitate. Saved my man’s life. We were sent from NY State. VQ scan, Right heart Cath – that is where to start. Go there.

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