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Adamski Find out more about Adamski
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  • How bad is bad?

    I am 51 years old and have just been diagnosed with HOCM. 50% of my Heart has thickened to 31mm. I've been told as the thickening is the bottom of my left ventricle a Septle Myestocy isn't possible. So, what I got is as good as it gets. As I have only just had my scans my consultant doesn't know if the thickening has stopped or it will get worst. Just want to see if any other members have the same or worst thickening. I know everyone is different, but as I can't do much now without getting out of breath, I am concerned for my future.

  • #2
    Hello Adam....I am sorry to hear of your predicament.....I also see that you live in the U.K. The first mode of treatment regardless of where your thickness is would be medical.....beta blockers, calcium channel blockers and Disopyramide singly and in combinations can provide some relief of symptoms by relaxing thecheart and allowing better cardiac output to meet the demands of the body. It can take a while to juggle meds and get optimum function. Here in the USA we have Centers of excellence that have dedicated specialists for HCM. HCM has a wide variety of expressions and a specialized plan individualized to your type of HCM and your symptoms is best.
    Gather lots of information from reliable sources. There is a Cardiomyopathy association in the U.K. that might be helpful in finding resources. You can also call the HCMA and/or join the HCMA Facebook group. There is a pioneering surgery available at Mayo Clinic Rochester Minnesota USA that might address the apical hypertrophy you are speaking about but I'm not aware of it being done in the U.K. Take one step at a time and get your medical management maximized to see how you do on that.
    After years of symptoms:
    Officially Diagnosed HOCM 2006
    Myectomy 3/11/13 at non-COE
    Extended Myectomy 7/23/14
    At Mayo with Dr. Joseph Dearani

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    • #3
      Hi Gill, many thanks for getting back to me. Yes, I've been put on Slozem (DiltiZem Hydrochloride), which I understand acts very similar to beta blockers. I've been put on these because I suffer from a weird blood related Asthma. My IGe levels are permantly high, so my body thinks it's under constant attack. To counter this I'm on a whole bunch of Asthma drugs, which includes prednisone. I've been on prednisone for past 10 years, with the dose levels varying. I've probably done the worst thing and Googled HOCM and picked up that HOCM and Prednisone don't mix. Do you know if there is any medical evidence that supports this? My Caridologist thinks the thickening of my heart might of started at the same time as my weird Asthma (10 years ago-ish). I'm concerned taking the prednisone has been like a slow suicide (not to get too dramatic!!). As I'm still on it (prednisone) will it cause my thickening to get worse?

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      • #4
        Hello Adam....It sounds to me like you have some complex physiological issues going on with your altered immune /IGg response....I could see the benefit of having your immunologist and HCM specialist having some collaborative sessions on managing your case... My understanding ( which is fairly limited ) is that the prednisone side effects of arrhythmias and hypertension can have an additive effect on the symptoms of HCM.But I'm not sure of any causative effect because true HCM is felt to be genetic in origin ...... whether your genetic studies are positive or not. There are still genes yet to be discovered and much research going on.
        Having HCM show up in your 40s 50s or 60s Is not uncommon. I hope you can tap into some medical experts to coordinate your treatment. If you were here in the US I'd recommend someplace like Mayo Clinic because not only do they have HCM specialist they have experts in all the medical disciplines.
        After years of symptoms:
        Officially Diagnosed HOCM 2006
        Myectomy 3/11/13 at non-COE
        Extended Myectomy 7/23/14
        At Mayo with Dr. Joseph Dearani

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        • #5
          Hi Adam,
          Whenever someone with HCM mentions that they have asthma, my ears perk up -- because asthma is often a mistaken diagnosis for HCM. Obviously I have no idea whether that might be the case for you, but I do wonder!

          The leading UK expert on HCM is Prof. Perry Elliott at St. Barts in London. I wonder if it's possible for you to be referred there for a consultation.

          Gordon
          Myectomy on Feb. 5, 2007.

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          • #6
            Thanks Jill and Gordon for you advice. My Asthma started in 2005 when I reached 40. My lungs started to fill up with mucus and despite taking antibiotics and other Asthma related drugs. It wasn't until I was put on prednislone that things got under control. This is when the medical team tested my IGe levels and spotted that they were unusually high. Gordon, I think you are right, because all energies have been put on controlling my Asthma I think it allowed my HOCM to worsen unnoticed. I watched one of those fly on the wall ambulance emergency programmes and one guy, who had Asthma was gasping for breath. The programme followed him into hospital where the medical team discovered he had a heart condition and unfortunately died that evening. I looked at my Wife and decided to get myself checked out. My Doctor put me on an ECG machine and spotted a T-Wave inversion. Got fast tracked to the Cardio team and the rest is history. Regarding my Asthma I am under the care of Prof Cullinan (Royal Brompton Hospital, London). There is currently a ping-pong happening between my cardio consultant and the Prof, so hope there will be a merged view. Again, thanks for all your help.

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            • #7
              I was diagnosed with moderate asthma and on inhaled steroids and bronchodilators on and off for decades.....Whenever I would get a cold My asthma would be bad enough to need nebulizers every 4 hours..... Once I got on treatment for my HCM the attacks seemed to lessen.....After my redo myectomy in 2014 they pretty much disappeared.. There is such a close relationship between heart and lungs the symptoms can be overlapping when it comes to wheezing, difficulty breathing, secretions. When the heart is thick and stiff it doesn't empty well and the pressure and blood backs into the lungs congesting the capillaries and putting pressure on the airways. So you could have both asthma and HCM or the HCM could be making your asthma worse? If I were you I would try to get to see the expert Gordon recommended and get your cardiac status stabilized....then maybe they could look at decreasing your asthma meds.
              After years of symptoms:
              Officially Diagnosed HOCM 2006
              Myectomy 3/11/13 at non-COE
              Extended Myectomy 7/23/14
              At Mayo with Dr. Joseph Dearani

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