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New Here... Sort Of


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  • New Here... Sort Of

    I am so glad I found this forum again. I was here a year or so ago and then lost the website and couldn't find it. My name is Kathy and I suffer from HOCM which is symptomatic. I do not take any medications at this time. I was tried on several beta blockers and they made me feel worse than the HOCM!! and I was tried on a couple of other heart drugs which also did not agree with me. I was diagnosed with HOCM in the year 2000. I was told it was moderate to severe. I just had a new echo and when I get the results I will post them here. Over the years I have put on alot of weight due to not being able to do much exercise without symptoms. Right now I am on Weight Watchers trying to drop the poundage.

    My cardiologist (who I do not believe is any sort of HOCM specialist but he knows about the disease) is sending me for a consult with another specialist. I think the new doctor is an electrophysiology specialist. So far I do not know the reason why he wants me to go to him except that I am being bothered alot by tachycardia with any exertion. I wore a heart gadget where anytime I felt symptoms I pushed a button and it recorded my heart beats and then I called them in over a phone line. All it showed was some arythmias and racing heart with walking, climbing stairs, bending over etc.

    Now here is my question. I hope you have all gotten this far! Do you all think I should allow this new doctor to do any invasive testing like electrophysiology testing, catherization etc? How many of you have had heart catherization?

    Second question is how many have had alcohol ablation and was it successful? Does anyone know of any links on the web or any info about the dangers of the procedure and whether it is worth doing. My regular cardiologist has talked about this procedure. AND how long do you think it is worth waiting before you consider have alcohol ablation? I get along ok. I can't do much exercising but I get along during the day ok. Would any of you do it at this point or would you wait until you were worse off? Are there any studies of long term survivals of people that have had this procedure? I have a zillion more questions but will wait until some of these get answered. I hope I get to meet you all. I am glad I found this site again! Kathy

  • #2

    I'm glad you found HCMA again. Welcome back! I also have the obstructive form of HCM. My symptoms were more or less under control with my cardiologist--also not an expert on HCM. But I was having lots of side effects--I learned this later; at the time I didn't know whether they were symptoms or side effects. Now I'm feeling LOTS better. Why? Because I went to a cardiologist who specializes in HCM & got evaluated. Now my original cardiologist and I are following the expert's guidelines.

    I think you should run, not walk, (Okay, walk. None of us with HCM can run much! ) to a cardiologist who is an HCM specialist. Bypass the electrophysiologist & interventions of any kind unless the HCM specialist recommends them. To get the name of the best one for you, call the office and talk with Lisa. The phone number is on this web site.

    I'm certain that once you've done that and gotten on a treatment program which is best for you, you'll start feeling much better.



    • #3
      Kathy -
      so much to cover...
      1. you need to see a cardiologst who can offer you all treatment options for your HCM with obstruction. A.S.A. (ablation) is one option, myectomy is another. There are drugs other then beta blockers that may help you as well.
      An EP will help assess risk of SD and look at the rythm issues...but you are really dealling with 2 different problems in one heart..."plumbing and electrical" the EP will check out the electrical...the cardiologist will check the plumbing (the obstruction).
      Where do you live and how old are you?
      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

        Lisa, I am 54 and I live in No. San Diego County. A question....If my heart if already in bad shape, aren't these sorts of invasive tests quite dangerous? Can you be setting yourself up for worse problems? It is a known fact that my heart rate is high. Between 93 to 103 resting and it jets way up there with exertion. Isn't this enough info for them? Have most people here with HCM had catherizations etc?


        • #5
          EP Studies


          EP studies have been found to be less than helpful for HCM patients. There are some people here who have had them, but if you went to an HCM specialist tomorrow, he would not do an EP study.

          If they try and push you to do an EP, personally, I would just say "no."

          Anytime anyone puts anything up into the heart, you are at risk for having it stop. Now, the better the doctor, the lower the risk.

          However, the EP study doesn't tell us anything useful for HCM treatment. You know you have tachycardia so you need meds to control it. If they want to know if you are at risk for sudden death, then they need to give you a stress test to see what your heart rate and bp do during the test. And see if you have ventricular tachycardia (which doesn't require an EP, but an ECG), a history of fainting, a history of cardiac arrest, a septal wall over 3cm and a family history of sudden death (heart related).

          Ablations have become very popular and many doctors think they fix everything. THey don't. THey should only be considered if you meet certain criteria ---seeing an HCM specialist will sort out what your treatment options are.

          Please call the office at 973-983-7429 to get the names of the top guns and talk to Lisa about who will work best for you and your situation.

          Take care,



          • #6
            Sarah, thank you sooooo much for your information. I don't know a heck of alot but I have been reading. Even for not being an expert, I knew that EP studies and catherizations (the one done with the dye) would not be that helpful. The heart monitor I wore for a month showed that I have tachycardia upon any exertion. This is what my cardiologist is worried about. I am going to pass on the EP studies thanks to your helpful response. I have read that 2 out of a 1000 people die due to heart catherizations. I have no idea how many might die do to EP studies. I have also heard that people have been left with arrythmias they never had after these studies and that people that didn't have arrythmias got them after these studies. My heart is bad enough! I don't need anything invasive that will make it worse. I can't wait to get my echo results back so I can post them for Lisa to tell me about! I will be calling the office soon to see if there is anyone available down in the San Diego area altho my doctor does seem somewhat knowledgable about the disease. He was the one suggesting the septal ablation. I am soooo glad I found this place on the web. I do not think my hocm is bad enough yet for a myectomy....


            • #7

              As you go to see a HCM specialist, keep an open mind about treatment options and question the specialist about them. I lived with HOCM for about a year thinking that it was not bad enough to warrent surgery. Since the physical changes in my health and lifestyle were very gradual, I did not notice them immediatly. I truly did not know if I felt bad because I had forgotten how it felt to feel good. I am now 3 months post myectomy and I am a whole new person!

              You will ultimatly have to make the decision for yourself. Good Luck.

              Bob Hartwell
              Cleveland Myectomy Crew
              Member since November 2002

              \"Chance favors the prepared mind!\"


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