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Joining the club


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Boz Find out more about Boz
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  • Joining the club

    I guess I can now officially apply for membership into the club. The diagnosis, confirmed by Drs. Maron and Udelson at Tufts on Monday – HCM which has in fact progressed to “end stage.” Kids will be screened next week.

    The past week and a half has been especially stressful. I’ve been trying to follow the numerous suggestions offered here and get my butt over to NEMC for a proper evaluation. My current cardiologist has been out of town and my HMO won’t refer outside their own confined network. On top of the confusion about my own condition, I’ve been living with the struggle that my kids need to be screened. But should we pull the panic alarm if it is still not known whether or not I have the disease? The rumor alone, they might have the disease, could change these young lives for ever. My two boys have been attending “double sessions” for football (heavy duty pre-season training and workouts- temps have been in the 90’s) and I’ve been holding my breath for days.

    Today, my PCP confessed that he agrees that the system is screwed up, that he will be the first one to vote for National Health Care Reform, that in this case he is stuck in the middle, and that I should continue to press, above him, for that referral. I just can’t imagine what argument could be presented that would show me that they have the patient’s best interest in mind by enforcing a policy that says I must use their “experts.”

    Considering what I have learned just by spending a few hours on this (excellent!) web site, followed by the quick yet thorough analysis that was done at Tufts, it is alarming that my care to this point didn’t take a different course. But here my moaning will end.

    I am thankful that I found this group, that I got into to Tufts and have been seen by the best. More appointments are already scheduled and I’m confident that the insurance coverage issue will be resolved one way or another. Some weight has been lifted from my shoulders but the breath holding will have to continue until the kids have been screened.
    • 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

  • #2
    Re: Joining the club

    Well Boz,
    If you had to ride a roller coaster at least you came to the amusement park with the best tracks. You have entered into the beginning of solving some of the puzzles that probably plagued you for some time ,given you are just getting your diagnosis and you are in end stage. Now we all know that the progression of HCM did not happen to you overnight. We can't go back and woulda, coulda, shoulda, but none of us would stop you because most of us share in the dilema you have just started. So let it out we have , you are among friends. It is the mourning stage when the reality of what has just been laid on you begins to sink in with all its ramifications of memories past , present difficulties and wonderment about what the future holds for you and your family.
    Press on with all you have to do especially with regards to your kids and getting them screened. It CAN all be very frustrating and overwhelming. Take it slow and come here for as much as you need us we are all ready to help as mucjh as possible and WE DO empathize with all the struggles you may face. Try to wake up everyday and feel a sense of "I must be here for a reason, today is a new day and I am going to have many, many more. "
    Best Wishes to you. 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


    • #3
      Re: Joining the club


      First of all, i love that name... it's just so Charlies-Angels. Woo hoo! Sorry for that... i'm a product of the 70's.

      Getting yourself properly diagnosed is the first step toward getting your children properly diagnosed as well. Push as hard as you can to get coverage for your kids to be tested properly at the NEMC. It can be tough at times... believe me i know. I have insurance that is at best maybe one step above welfare, but somehow i have still managed to get good care. You just have to fight for it. I wish that this weren't the case, but it is.

      When you say that you are in 'end-stage' HCM, what specifically does this mean? I have to admit that i'm a bit confused by the terminology.

      As far as your children are concerned... every parent wants better for their children than what they have themselves recieved, and it is only natural that you should want your kids to enjoy their childhoods and compete with their peers like every other kid. Unfortunately, since you have been diagnosed with HCM, this raises some speculation as to whether they are safe in proceeding with their own extra-curricular activities.

      Please have your children evaluated for HCM at the recommended time intervals, and make your choices for them accordingly. That's pretty much all any of us can do.

      Take care,

      "Some days you're the dog... some days you're the hydrant."


      • #4
        Re: Joining the club

        I should correct myself on what was actually said regarding the diagnosis. They confirmed that I have non-obstructive HCM which “APPARENTLY” has progressed to “end stage”. Dr. Maron says that mine is a complicated case and he wants to do additional tests, but based on what he has for evidence – his own echo and some of my older medical records, it looks like “end stage”. Believe me, I’m no expert on what “end stage” is – might become one soon, but not yet. Lisa has a good article on it in Newsletter Vol1, Issue2.. The article is titled “What is 'burnt out HCM".
        • 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


        • #5
          Re: Joining the club

          I am happy you have sought the opinion of NEMC and I am glad you have some answers. I am not surprised in the findings - it is what I thought they would find. As we discussed your case is not "typical" and therefor it is hard to believe that a non HCM specialist would have fully appreciated your condition.

          Best of luck on screening your children.

          Best wishes,
          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)


          • #6
            Re: Joining the club

            Hey Boz from Quincy,
            (What a great handle.) In regard to HMO’s, the idea is to make money be taking care of the little medical problems, so they don’t grow into major issues. Instead it seems they want to earn money by denying you proper care.

            I am in an HMO that contracts with one group of cardiologists, and they all claim to know all about HCM. I luckily had one doctor who gave me a proper diagnoses and care, but he left the group. The next doctor I got read my echo and wrote up his impressions – leaving out almost all the raw figures. He then destroyed all copies of the raw data – not even the hospital has a copy.

            When I saw him in his office, he tried to impress me with how much he knew about HCM by telling me, “Some people are born with it, and others acquire it later in life from other causes – like high blood pressure.” He never explained how you could acquire a genetic disease later in life from other causes, but I didn’t want any part of him.

            My next doctor always refers to the condition as hokum, and I believe his understanding is such that if you are not obstructed, you don’t have the disease. At my last appointment he stated that he doesn’t think I have hokum, but something else just like it. (I have HCM, and only occasionally an attack of HOCM.)

            I am now going back to the doctor who diagnosed and treated me properly – out-of-pocket, with a lot of dancing around to get my prescriptions and testing ordered by my PCP. In the event I am again hospitalized I will again be under the control of the incompetent fools, and the same is true for a cath.

            I applied twice to be seen by real specialists in California. So far one was denied and the second is on the way. I mean after all, with all these ‘experts’ in the plan, why allow somebody to go anywhere else?

            I will see an expert out-of-pocket also – just as soon as they deny the second try and appeal. Sometimes it’s a tough road we hoe, but if we want good care we have to go to extremes at times to get it.

            Good luck to you and your children. At least you’re going to the best there is, and when all the dust settles, that’s what really counts.


            • #7
              Re: Joining the club

              Hi I can understand your thoughts and fears about your children. My daughter will be 7 on Sunday. She is very active in school and involved with dance and gymnastics. She had an echo done just a few months after my diagnosis. We getting close to her echo for this yr. I decided to get her tested after the true reality set in I prepared myself for the worst but hoped for the best and so far so good. Ive watched so many of my own echos, when I watched hers I broke down into tears as I could see that there was no obstruction. I pray that you can get the best medical care available and that your sons are healthy also.


              • #8
                Re: Joining the club


                I also have children and one of them have test positive for the disease and i thought well it has made all this worth it just to have him in good shape, he does have chest pains and SOB but he now has his ICD and that makes mom feel much better and i thank the man upstairs that he was tested and they found it now,

                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


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