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Once HCM "kicks in" does it always keep getting wo

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sierracharlie Heart murmur since birth, diagnosed in 2004 after significant functional decline over about a 2 year period. Managed by meds from the VA until septal myectomy on Jan 12, 2016 Find out more about sierracharlie
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  • Once HCM "kicks in" does it always keep getting wo

    Hi folks, new guy here. I was just diagnosed about a week ago. I'm 56, and although in retrospect I can see that I've had the usual HCM symptoms all my life (mitral valve murmur, somewhat high BP, very strong pulse, having to work harder than my peers to attain the same level of fitness) until I was 50 I just figured I had a somewhat non-responsive body. Then I suddenly got worse at aerobic events. I'm hooked on long-distance bicycling, and up to then I was pretty good at 100-mile mountainous rides, and finished (barely) a few 200-mile one-day events. Mostly I love loaded touring, though; spending multiple days just cruising along at a moderate pace with all my worldly goods in my bike trailer. I used to climb for hours at an HR of 140-145 and spike to 155-160 in my late 40's - pretty much age-appropriate HRs, even though I wasn't as fast as the next guy with the same training time. Since I hit 50 it's been a pretty linear dropoff. Last summer I couldn't get my HR above about 130, and felt pretty flaky at that HR. I could (power) mow the lawn at a slow walking pace but not at a normal walking pace. Had some gray-outs this past winter and just got diagnosed at the VA hospital in Seattle.

    My question is: so I drifted along fat/dumb/happy for 50 years with only moderate signs of HCM before it "activated". This has been a spooky decline and now affects day-to-day activities. Once HCM starts this trend, is there any predictability to whether it plateaus, or can I look forward to breathing pure O2 just to walk across a room sometime soon?

    Thanks and gee it's nice to join the club...I guess...

    Oh yeah, numbers, for whatever they mean - 1.9cm septum, 39mm HG resting gradient. I have no symptoms at "idle' but they show up in a hurry when I get moving.

    /Steve

  • #2
    Re: Once HCM "kicks in" does it always keep gettin

    Steve,
    From the tone of your posting you appear to have a good attitude, and a sense of humor is suspect.
    HCM Can progress over time, symptoms can get more severe and in some cases it stays pretty much 'idle'. I think now that you are on the right track it terms of finding more information, learning what is good for your heart and what is not, you will find that over the next few months you can begin to LIVE with your HCM and with some work we can help to manage your care so you can feel as good as YOU can.

    Be well,

    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)

    Comment


    • #3
      Re: Once HCM "kicks in" does it always keep gettin

      Steve--Your history sounds pretty much like mine except my athletic activities weren't quite as grand as yours. I was always sort of behind others but interested and game to do things and could sort of keep up. Until sometime in my 50s. Then the grey-outs. Same as you, fine when I wasn't moving but starting up or changing speed produced near-fainting.

      I actually have a different root cause of my HCM (at least as far as I know) but do think you should be sure to talk to an HCM specialist who should be able to help your level of functioning somewhat with meds and should be able to keep you from continuing your downward spiral.

      Lisa can help you find a specialist. Grey-outs are not good!

      Sue

      Comment


      • #4
        Re: Once HCM "kicks in" does it always keep gettin

        Sue -Thanks for the reply. I'm assigned to the Boise VA, where I have my first post-diagnostic appointment on the 25th. Up in Seattle they seemed quite competent in the cardiac unit. Does anyone in the forum have any experience with the VA hospital in Boise when it comes to HCM?

        So far the treatment seems appropriate in view of my present knowledge - beta blocker, ACE inhibitor and cholesterol reducer since I did have a little rust in the pipes and suddenly my cholesterol shot way up after being fine my whole life.

        How long have you been having your grey-outs, and are they getting worse?

        Anybody else laughing at the irony of the fact that early diagnosis would have pretty much trashed our lives? If the Army had known I would never have gotten in (and wouldn't have the free care I have now) and I would have been discouraged from doing anything fun - to me that means to the point of exhaustion. Ain't no way to live life; I'm glad I didn't know and there are plenty worse ways to go than in the midst of a grand physical effort.

        /Steve

        Comment


        • #5
          Re: Once HCM "kicks in" does it always keep gettin

          Hi Steve,
          In retrospect I have always been a bit SOB – short of breath – and had difficulty keeping up with my peers during sustained exertion. (I was the fastest kid in my high school at the sixty yard dash, but could not go 120 yards.) As a kid I was told I had a murmur and an athletic heart. (Didn’t know about HCM in those days.)

          At around fifty I began to experience more marked interference with my activities, but then other health problems manifested themselves, and I had those to blame it on. I was just diagnosed with HCM at New Years, when I was admitted to the hospital with an HOCM attack. But if you’ll pardon the expression - take heart – I’m now 71 and still chugging along fine.

          I also am on a Calcium Channel blocker (360mg Verapamil HCL SR) and a Bata blocker, (50mg Atenolol) but when I was diagnosed with HCM my new cardiologist took me off the ACE inhibitor and Alpha-Adrenergic blocker.

          I completely agree with Sue about contacting Lisa for help in finding a competent HCM specialist in your area. Not all cardiologists are up on this disease. Working with the VA is fine, but maybe a little outside help is in order. I get most of my drugs through the VA also, but most of my medical care is through an HMO.

          I would be interested in hearing how things work out for you, especially when you have everything under control again.

          Good luck,
          Burt

          Comment


          • #6
            Re: Once HCM "kicks in" does it always keep gettin

            Steve , Hi and welcome . I can't say that not knowing what I had for years helped me or my family, not that knowing you may die suddenly or get sicker is a good thing to find out especially when we are young . But my point is that I strongly believe in early intervention as a possible mode of slowing down or forstalling some of the worse effects and advancement of this disease. We can not assume by any means that treatment would have made a difference but in retrospect I must speculate. I was at age 47 , 3 1/2 years ago, the first in my family to be diagnosed and treated. Getting that proper diagnosis was a path laden with personal pain , suffering and feelings of guilt that I was responible for my ill health. My doctor refuted all my symptoms, all data , tests and diminished and dismissed my complaints by telling me I needed to push myself harder and work more and that I was probably depressed. That led me to do my own research and to conclude my own diagnosis after carefull review of my entire case. Knowing all that I knew it was still a terrible shock to have all of the facts fed back to me by a pediatric specialist who clearly understood HCM. With this info in hand I moved on to Hcm specialists and later was able to direct my older brother in the same direction and he recieved the same dx. Then my mom was seen as the carrier of the gene. My brother has the non obstructive form but had been on beta blockers fo years as well as various other cardiac meds. I certainly wonder if I could have benefited fron early treatment instead of all the passing out ,grey outs , severe SOB and heart pounding like a locomotive in my chest. Also I cannot help but wonder if only my family knew would my 2 cousins who died suddenly at age 30 and 42 still be here if they had recieved early treatment and dx. They both died of cardiomyopathy and know one seemed to think that strange! No follow up was done. Now I know I am still the lucky one because as even though I had severe HOCM with CHF I am here with my defibrillator /pacer and 4 months post septal myectomy and getting stronger everyday. I worry frequently of others in my family who will not get checked or don't take it serious because I think data does support the probability of benefits from knowing earlier. Saying all this I agree to an extent with you, what choices would I have had to make differently had I known when I was young, would I have even made those choices ? I do know that many of the practical differences for knowing seem to be reasonable . For me being on medicare and struggling financially as a single person is an extreme impact. I think I was as frugil as I could have been whether I knew or not. One Idea keeps poping into my head do we really have a lot to do with our destiny or do we have a lot to do with our destiny? I do not have the answers but I do think not knowing was like playing Russian roulette for most of my life and not being informed that the game could have killed me. At least now I have a little bit more protection and I know the rules. We truly are all different and effected uniquely. Just my thoughts, kind of deep for a Sunday morning huh? Take Care .. Pam
            Dx @ 47 with HOCM & HF:11/00
            Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
            Lead failure,replaced 12/06.
            SF lead recall:07,extracted leads and new device 2012
            [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
            Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
            Genetic mutation 4/09, mother(d), brother, son, gene+
            Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

            Comment


            • #7
              Re: Once HCM "kicks in" does it always keep gettin

              Originally posted by sierracharlie
              So far the treatment seems appropriate in view of my present knowledge - beta blocker, ACE inhibitor and cholesterol reducer since I did have a little rust in the pipes and suddenly my cholesterol shot way up after being fine my whole life.


              /Steve
              Steve, I think we should talk, ACE is NOT recommended in HCM, in fact it can make things worse in many patients.
              I will be in the office on Tuesday - 9-6pm EST

              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)

              Comment


              • #8
                Re: Once HCM "kicks in" does it always keep gettin

                Hmm, food for thought re ACE inhib not being the right thing for HCM. I just read the Mayo Clinic drug info on HCM, and sure 'nuff ACE inib is not on the list. I'd like to call and discuss but Tue-Wed-Thurs are my days in the barrel at our general store ( www.dayvillemerc.com ) so I won't be able to.

                What is there about ACE inhibitors that makes them inappropriate for treatment of HCM? I'd love to have better knowledge than I have right now so as to be better prepared for my next VA appointment on the 25th.

                Comment


                • #9
                  Re: Once HCM "kicks in" does it always keep gettin

                  Hi again,
                  If you’re the Steve Cookinham listed as co-owner of the store, (or not), couldn’t Linda McClinton spell you long enough to make a call to Lisa? Or, could you make the call from the store during a short break? Or even at six AM your time?

                  You’re dealing with important stuff here, and obviously the cardiologist at the VA is not as sharp on HCM as one would hope – since he prescribed the ACE inhibiter in the first place. To say Lisa is an important resource in these things would be an understatement of gigantic proportions.

                  Please, please, take advantage of her offer.
                  Burt

                  Comment


                  • #10
                    Re: Once HCM "kicks in" does it always keep gettin

                    Yup, that's me all right. It's a bit more complicated than I mentioned, though. The store is a 3+ hour drive from where we live the rest of the week in Baker City, and I am there by myself those 3 days each week. Can't have an uninterrupted call during store hours. Linda is over here in Baker running our B&B ( www.baerhouse.com ) and since she has MS at a level that prohibits her from doing the solo drive and store thing, I'm essentially in limbo those few days. I'm sure Lisa and I can find some time to chat. I'm by no means blowing off her offer.
                    /Steve

                    Comment


                    • #11
                      Re: Once HCM "kicks in" does it always keep gettin

                      Hi Steve,
                      It seems that things never are as easy as first envisioned. I guess that’s the way the cookie always seems to crumble.

                      Listen, I don’t want to become a pain in the southern extremity of a northbound bird – butt – I would like to make another suggestion. That is to PM Lisa and try to set up a time to call that would be more convenient to the both of you. I think it is that important.

                      Sorry to be such a nudge,
                      Burt

                      Comment


                      • #12
                        Re: Once HCM "kicks in" does it always keep gettin

                        I think I will be recruiting Burt as my new personal assistant! Steve, I am sure we can find a time that is good for both of us. PM me with some good times to chat and I will do my very best to find a time that works for us both!

                        Thanks Burt!

                        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)

                        Comment


                        • #13
                          Re: Once HCM "kicks in" does it always keep gettin

                          Just sent PM, thanks

                          Comment

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