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new to this having a tough time


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michael obrien Find out more about michael obrien
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  • new to this having a tough time

    I m 36 and found out 4 mos ago after being hospitalized with rapid heart rate and elevated enzyme levels that i have this. I am taking beta blockers and 120mg verapamil and altace.I have been losing weight and not drinking any caffeine. I stillhave palpitations and some days r worse than others I cant figure out why.I am taking the whole think kind of bad.I have a question for any one out there, 1 cardiologist told me not to do any exercise at all,but another said I can do some light jogging and swimming which I would love to do he explained that the medications would not let my heart rate go to quick to put me in danger which is true help mike
    One day at a time.

  • #2
    Re: new to this having a tough time

    Mike it is good to get a little exercise walking would be good.... even a bicycle or swimming as long as you don't do it to the point of exhaustion, what kind of beta blockers are you on, i take 360mg of verapamil, but it is also important to not get dehydrated, so unless you have heart failure drink drink drink water water water, Mike where do you live and have you seen a specialist yet if not call Lisa in the office on Tuesday or Thursdays she can point you in the right direction( the number is at the bottom of the page, welcome to our sight, it can be rather scary in the beginning .... but the more you know the better off you will be

    Diagnosed 2003
    Myectomy 2-23-2004
    Husband: Ken
    Son: John diagnosed 2004
    Daughter: Janet (free of HCM)

    Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9


    • #3
      Re: new to this having a tough time

      HI Mike,
      Welcome to the club you did not want to join! You have begun a long journey into the world of HCM - give yourself time to learn.
      The exercise question is not a 'yes or no' one, it depends on YOUR heart and your management. I will be in the office tomorrow try to give me a call around 10:00am and we can start the process of getting you up to date!

      FYI we are the same age - I was diagnosed when I was 12 - so I have known about my HCM since we wore DISCO SUCKS T-shirts in middle school We are going to help you through this with lots of education and a few laughs along the way!

      Hang in there!
      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)


      • #4
        Re: new to this having a tough time

        Mike, Welcome, I'm glad you've found us. It sounds like you are doing your best to reach the best condition you can. You're still having problems with the palpitations and rapid rates, so your meds don't seem to be giving you all that you need. I hope you are able to talk with Lisa and arrange to see someone well experienced in dealing with HCM. A real good evaluation will go a long way toward letting you know just how much you can do and what your limitations, if any, should be. Lisa will help you out with that. You have a lot to learn and get used to, allow yourself the time you need. You will find lots of friends ready and willing to listen, talk, help you out any way they can here on the message board. The unknowns are so hard to deal with. You say you are taking the whole thing kind of bad, but I bet your taking it pretty much the same as anyone else has. Don't be too hard on yourself, lean on us for a while and you'll soon find others leaning on you in turn. Please keep us posted, best wishes, Linda


        • #5
          Re: new to this having a tough time

          Dear Mike

          It sounds like they are throwing the kitchen sink at you in terms of medication. It is unusual to be taking a beta-blocker, a calcium channel blocker AND an ace-inhibitor. Also, the last one is not usually helpful to HCM patients.

          I highly recommend you get to an HCM specialist and find a better medication fit for your symptoms and your condition.

          As for exercise, some doctors who don't understand HCM think you are just going to drop dead at the mention of exercise. They are wrong. You need to listen to your body and do what feels good and not push too hard, but do what you can.

          Be sure to have a conversation about the risk factors for sudden death and if you have any of them. The factors are a personal history of fainting, family history of sudden cardiac death especially at an early age, septum thickness of 3+ cm, inappropriate blood pressure reaction to exercise, and history of ventricular tachycardia. (list text stolen from Reenie)

          take care and let us know how you are doing,


          PS totally normal to spend some time playing with meds to see what works best.


          • #6
            Re: new to this having a tough time

            Dear, Mike ,
            We are here to help you through these difficult times and to help you sort through the sea of information that is coming your way and flooding your brain. It is easy to become emotionally overwhelmed at times. It is a huge thing right now for you I am sure and can leave you feeling numb. You are probably daily going through a list of things to do just in case the worst happens. It is ok to do these things because our brains file everything for future use. You don't need the list but if it helps you process then by all means do these things. You by no means need to stress yourself out to the point where functioning can be difficult and interfer with life as it is for you presently. I say this because if we who have HCM think back to the day we found out and the days that followed , we remember what it was like. I personally thought I would lose my mind first before anything else or that my heart would stop beating from the fright alone.
            As you can see me and a lot of other folks have made it quite a distance from those early days and we look forward to many more. Yes there will always be ramifications to how this disease effects your life and those close to you but, it will in time not be in the forefront of of every waking moment.
            Start slow and go easy . I hope you were able to talk to Lisa yesterday . That call should be very comforting to you and give you hope.
            I look forward to getting to know you and helping any way I can.
            Welcome to the family.
            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


            • #7
              Re: new to this having a tough time

              Finding out about HCM is alot to deal with. Thank goodness you found HCMA. I found out about my HCM about 6 months ago from a cardiologist that made it sound like I would suddenly drop dead if I chased my 2 year old accross the yard. At the time I was only 29 and couldnt fathom that someone my age could have this. So I understand how you are feeling.
              You do need to see an HCM specialist as soon as possible. You will get so much peace of mind from knowing you have seen someone who is knowledgeable about your condition. A specialist can best tell you what amount of excercise is good for you and what meds you should be on. Good luck to you and please feel free to post any concerns or questions. There are alot of people here who are happy to share their experience and really care about whats going on with you.
              2.6 Septal Measurement
              ICD Aug 2010 (pushed into it over 6 abnormal beats...hate it!!!)
              "I would rather have thirty minutes of wonderful than a lifetime of nothing special"
              ~Steel Magnolia's~


              • #8
                Re: new to this having a tough time

                Originally posted by Sarah

                It is unusual to be taking a beta-blocker, a calcium channel blocker AND an ace-inhibitor. Also, the last one is not usually helpful to HCM patients.
                I have been on Atenolol (beta-blocker), Verapamil (calcium channel blocker), and Coumadin (anticoagulant) since May. The Drs. at TUFTS just added Lisinopril (ACE-inhibitor) this week. They did want to delete the beta-blocker but quickly learned that they couldn't - heart rate went way up.

                Mike - I think you are going to find that with palpations (is it A-Fib or Atrial flutter?) that you just won’t be able to exert yourself much and probably shouldn’t try. Doesn’t mean that’s going to last forever.

                I have some bad days where walking 25 yards takes my breath away, but that’s unusual. Other days I feel completely normal – maybe I tire a little more than I used to, but other than that have no really significant symptoms of a disease. Of course, they are saying my case is an unusual one.
                • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
                • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
                • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
                • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
                • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
                • 2011: Brigham & Women’s - Medtronic ICD implant


                • #9
                  Re: new to this having a tough time

                  Hi Mike,
                  Where about in Nassau County are you? I rattled around there for years in my younger days – Hempstead, East Meadow, Rosedale, not to mention bordering towns in Queens and Suffolk. I left Dix Hills in the Township of Huntington about twenty-five years ago for LA, and three years ago I moved here to the edge of Las Vegas,

                  I’m seventy-two years old now, with a list of ailments, but I just keep chugging along enjoying myself. HCM can be intrusive and a pain in the butt sometimes, but it is a completely livable condition. There are some wrinkles though. It affects about one in five hundred people, a segment of which do not even know they have it, so it is a small corner of a cardiologist’s practice. A few will admit they don’t know much about it, the majority will know something about it, but it’s generally out of date or misguided information. (There has been a lot of progress in the last ten years.) Then there are the few who are really on top of this condition, and that’s who you need to be treating you.

                  I hope you have spoken to Lisa already, and she has given you the names of doctor’s in your area that know all about HCM. If you haven’t spoken with her yet, please do so – she is a fund of information, and can be a giant help to you. Her number is at the bottom of the page, and she is usually in the office Tuesdays and Thursdays. If you miss her, Kelly can help you get things set-up.

                  Just one other point, I have a secondary heart condition and was on a lot of medication, and when I was finally diagnosed with HCM the very first thing the doctor did was to get me off an ACE inhibitor, and I felt lots better. (I already was on a calcium channel blocker and a beta blocker, but the dosages needed adjusting.) There is a world of difference between cardiologists – you need the right one to be helping you.

                  Good luck, my friend – welcome to the board, and please keep in touch.


                  • #10
                    Re: new to this having a tough time

                    thank you all so much for responding to my post I have been feeling better today just knowing that their are other people living and doing well.I am going to call lisa on tues. to find a specialist in my area.Im so glad to have discovered this sight. God bless all of you, your in my prayers sincerely mike ob :P
                    One day at a time.