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The CHF-HCM confusion-mystery.

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  • The CHF-HCM confusion-mystery.

    I have been told by medical professionals that CHF is a clinical term and very broad classification. Technically HCM can be a form of CHF.
    But the question becomes for us, how do we distinguish the two in our management.
    E.g. During my HCM life, never had CHF like functions like edema, fluid in the lungs, SOB, trouble sleeping, etc. Also, none of the tests like chest X-ray, blood test, etc show CHF.
    Now, I was started on toprol the day I got my pacemaker. Since that I have CHF like feeling, but only weird feeling in my throat and need to have extra pillow. SOB with exercise has increased since pacemaker iand toprol as well. Still no edema, fluid retention, weight changes.
    Chest X-rays are normal, etc etc...

    Does heat give CHF like feeling? Does change in Toprol dosage give CHF feeling? Also, recently felt really good, and went crazy on the dance floor at a wedding.. CHF feeling since then.
    Any similar experiences ?????
    Ketan Thanki

  • #2
    Re: The CHF-HCM confusion-mystery.

    Well, I'm really discouraged when I hear stuff like this. Taken literally, yes, all HCMers have chronicly reduced heart function. However, CHF -as a specific medical condition- has its own set of symptoms and treatment. In fact, the treatment for CHF runs counter to HCM treatment in many ways and thus makes it very hard on people who have both.

    I don't think it helps patients in any way to confuse the issue with semantics. Doctors don't manage your care based on semantics, they do based on what you have.

    For example, HCM causes sob, chest pain, dizziness, etc., but not fluid retention/edema which is/are the key symptom/s of CHF. And HCMers should have lots of liquids and plenty of salt. CHFers should not.

    If your current treatment makes you feel worse than before, it obviously needs to be adjusted. I was on Toprol for years, never had any CHF-like problems. Perhaps the pacemaker needs re-programming or you would benefit from a different beta-blocker or even a calcium-channel blocker. Have they tweaked anything since you've had the increased SOB?

    All these things can require fine-tuning at their onset.

    Over heating or sitting too long in a hot, humid enviorment will make anyone swell up, but especially and HCMer, and that doesn't mean you have CHF if it only happens when its humid.

    take care,

    S

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    • #3
      Re: The CHF-HCM confusion-mystery.

      Ketan,

      First, since you can track this change in your symptoms to the time you received the pacemaker and started on Toprol, I would say there is a high liklihood that your symptoms are "caused" by one or the other (or both). I think you should call your cardiologist early tomorrow morning and discuss the situation with him or her. It will help if you have at hand some notes which give specific dates and symptoms as well as what you did to relieve the symptoms and whether it worked. Like, "Started sleeping on three pillows two weeks ago because I was short-of-breath on two. I breathe & sleep okay on three."

      HCM is not a form of CHF. HCM is a pathology of the heart muscle, most often characterized by thickened and strong heart muscle tissue. CHF describes a functional weakness when the heart is unable to pump the blood adequately to the lungs and/or body. I think that most of those people with HCM who develop CHF either have a cardiac response to particular stressors (changed meds, infections, environmental changes) or are in a late stage of HCM and the previously hypertrophied muscle has weakened and stretched. Might one of these apply to you?

      One can have allergic responses to Toprol. The literature mentions specifically a sore throat, spasm of the larynx, and rash as reflecting an allergic response. If that's what you're experiencing, take no more of the Toprol and get yourself to a doctor--ASAP! Like tonight.

      Now, to focus on the common responses to meds. (I know nothing about pacemakers except they can be set wrong and can create all sorts of symptoms.) The beta-blockers (Toprol included), by slowing the heart, do have side effects like SOB on exertion, dizziness, difficulty sleeping. It still seems strange to me that the drug which is supposed to improve the functioning of my heart actually causes the same or worse symptoms than does the pathology of HCM! But that's what happens. I, myself, was on Toprol for three years; increasing dosages brought increasing symptoms. I'm now on nadolol and have less of these symptoms. As is said here often, each of us will have unique responses to each med.

      As to the heat. Many with HCM report an intolerance to heat. I've heard a few explanations for this; none of which really satisfy me. I can assure you that our desert heat, especially with the humidity we're having right now, really does wipe me out. And my feet, especially, feel puffy without showing any signs of edema. I attribute that to a small amount of fluid retention, not enough to be concerned about. I use electrolyte-replacement fluids instead of water when I'm sweating a lot & that seems to help some.

      My equivalent of your excess at the wedding is to go out in the desert training with a search & rescue dog team. I enjoy it and feel good while doing it--and then spend two or three days recovering afterwards! I've decided it is a necessary trade-off, whether because of the meds or the HCM doesn't seem to matter.

      I hope this helps some. Good luck--and do call the doc!
      Pat

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      • #4
        Re: The CHF-HCM confusion-mystery.

        Sarah & Pat,
        Thanks a lot for the response. Let me clear the seq. of events:

        April First degree heart block cause pacemaker implant. Normal SOB response to the exercise as before.

        Pacemaker and Toprol started on the same day in April.

        First week after pacemaker implant Cardiologist increased Toprol dosage due to increased PVCs and PACs.

        After pacemaker adjustments almost every week for the first four weeks.. things settled down and went back to normal.

        July - trip to Mayo. and reduced toprol dosage from 100mg to 50mg.

        Felt no difference. Everything Normal.

        Last week after forgetting about HCM, went little crazy on the dance floor at the wedding.

        Since, need for an extra pillow. SOB feeling when bending over or pressure on stomach. No fluid retention. No edema. No problem going to sleep. Occasional couple of coughs to wake up at night and stops. SOB is more like pressure on the throat and not a true huffing and puffing.

        I have an appointment with my cardiologist in a week. I have also read in pacemaker theory that AV delays usually require adjustments after Beta blocker dosage change. Also, according to mayo's management plan, after watching the reduced toprol dosage for a month or two, the AV delay is to be increased such that my heart operates on its own.
        Ketan Thanki

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        • #5
          Re: The CHF-HCM confusion-mystery.

          Pat and Sarah - great answers!
          K- these symptoms should be followed up with your doctor. I would check those settings and look at your meds. I hope your HCM lets you "forget" about it again soon!
          Lisa
          Knowledge is power ... Stay informed!
          YOU can make a difference - all you have to do is try!

          Dx age 12 current age 46 and counting!
          lost: 5 family members to HCM (SCD, Stroke, CHF)
          Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
          Therapy - ICD (implanted 97, 01, 04 and 11, medication
          Currently not obstructed
          Complications - unnecessary pacemaker and stroke (unrelated to each other)

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