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Fitness Limitations Following Ablation

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  • Fitness Limitations Following Ablation

    [Fitness Limitations Following Ablation]

    Author: Brad Roylance (64.122.25.---)

    Date: 06-20-02 20:20

    I have some questions regarding what fitness limitations I may have following diagnosis of HCM and alcohol ablation performed July of 2001. I was hoping that one or many of you might be able to provide me some insight on the subject.

    Let me give you some background. I was diagnosed with HCM over a year and a half ago following several near black-out episodes. I was placed on beta-blockers that seemed to help some but over time I was not at all satisifed with my quality of life. I was still experiencing significant fatigue on exertion, heart was racing occassionaly and I was tired all the time. I told my cardiologist that I was not satisifed. While he had previously discouraged my considering alcohol ablation, he agreed to refer me to a doctor in the local area who was now doing the procedure (Dr. Sorenson at LDS Hospital in Salt Lake City). He had done about a dozen procedures before mine. The procedure was done in July of 2001. Dr. Sorenson commented that my hypertrophy was significant (3x oversized) and that he had used more alcohol on me (5 ccs) than in any of the previous procedures he had done. Well, I have seen the subsequent echos and he took a nice big chunk out of there and I have had only minimal left bundle branch block. In subsequent echos, it has been determined that the gradient was reduced significantly, although there still is some (I can't remember how much).

    I have felt great and am very pleased that I deceided to have the procedure done. For the past six months, I have been playing basketball three times a week for about an hour a day. The last two months I have also been running twice weekly. I am quite pleased with the level I am able to exert myself and I feel that my fitness continues to improve. However, I am wondering if there is a limit to how well I can get myself in shape as compared to a person without HCM. Because of the presence of some gradient, I know that there is still some restriction of blood getting out of the left ventricle.

    Can anyone provide some insight on this subject. The doctors office was no help at all. I have looked for a journal article that might address this but have had no success. I don't want to be out there pushing myself and stressing my heart if it is doing any good.

    Any help would be greatly apreciated. You can call me at the number below if you would like.

    Brad Roylance

    (801) 524-9323 (work)

    (801) 268-8065 (home)

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Fitness Limitations Following Ablation]

    Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)

    Date: 06-21-02 00:16

    Dear Brad

    Well, my first concern is that some one who is blacking out and has such a large septum should really been seen by an HCM specialist and evaluated for an implantable defibrillator-cardioverter, which would shock you back into normal rhythm if you have ventricular tachycardia or fibrillation. Do you know if you have had any ventricular tachyardia recorded? Those are some of the risk factors for an ICD need.

    HCM is soooo individual, no one can say give general guidelines like you are asking for. If you see an HCM specialist, then your doctor will have a better understanding. Furthermore, there is a type of stress test they can do to see if you have any blood pressure problems during exercise that would tell you if you 1. need an ICD and 2. how much exercise you can tolerate and 3. is anything else going on with your heart when you exercise.

    I'm sorry that I can't say "Do X and Y but not Z" but please call the HCMA at 973-983-7429 to get the name of an HCM specialist and to talk to our resident expert, Lisa.

    take care,

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Fitness Limitations Following Ablation]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 06-23-02 21:21

    I will simply add to Sarahs responce by saying ...Obstruction is not the disease, this is a disease of cell structure and we must not forget this.

    The cause of the black out needs to be clearly identified and if they are not hemodynamic they need to be evaluated for possible treatment with other means. You must also remember that your heart is not able to relax as it should due to your cell structure, so as you place demands (such as running) on your heart it is not as able to respond as a "normal" heart, and you are placing an added strain on your heart.

    While this is not a yes or no answer I hope it helps.

    Lisa Salberg

    HCMA

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Fitness Limitations Following Ablation]

    Author: Pete Baumgartner (---.213.58.173.rferl.org)

    Date: 06-25-02 17:42

    Hi Brad --

    As I explained on another thread, I'm 35 and was diagnosed with HOCM and a very high gradient almost a year ago after passing out while playing basketball. I had a successful ablation in Germany (I'm an American living in Prague, Czech Republic) in February and my gradient is virtually nonexistent now.

    I have been playing some tennis, squash, and softball rather easily the last several weeks and experience no symptoms. My doctor, Dr. Seggewiss, who has performed over 500 ablations and is considered one of the leading experts on the procedure and HOCM, has only told me to "not play to win." Basically not to be supercompetitive when engaging in sports. He said I have to find my own level and that I should have warning signs if I'm overdoing it. I find this advice rather frustrating as I have always been competitive and if I'm involved in a sport I can often take it easy but there are other times when I will instinctively play very competitively. Like you, I thought for sure there would be some literature out there or some studies that have been done on people -- perhaps not post-alcohol ablation but certainly post-myectomy -- and their would be some basic guidelines to go by depending on the previous condition and the current gradient. But I also realize that a heart condition is a difficult thing to pigeonhole. Lisa and Sarah's messages above seem to confirm that. It's still very frustrating to me to be engaging in sports so blindly. I was afraid for a long time but find that when I'm out on a court or a field I find myself going "all out' like in the old days. I feel fine and feel like I'm slowly losing all inhibitions, which in the back of mind seems like it could be fatal for me. Like I said I wish there was some study or at least body of statistics on the activties of people who are post-myectomy or post-ablation.

    Best regards,

    Pete Baumgartner

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Fitness Limitations Following Ablation]

    Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)

    Date: 06-25-02 22:39

    Dear Pete

    Only about 1% of the HCM population dies suddenly each year. If you have been evaluted for sudden death risk and come out on top, then that should ease your mind quite a bit. HCM is still too individual and broad to make strict guidelines a thing of the near future, but maybe someday we'll be able to say "20 minutes here and 20 minutes there" or whatever.

    If you don't trust yourself, maybe you should talk to someone you trust and play with often to help you gage when you may be playing too hard.

    best of luck

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Fitness Limitations Following Ablation]

    Author: Pete Baumgartner (---.213.58.253.rferl.org)

    Date: 06-26-02 15:47

    Hi Sarah --

    Thanks for your message and good advice. Can you tell me, of the 1% of the HCM population that dies suddenly, is it known what percentage of those people were unaware that they had HCM (for instance, the young athlete that dies while playing sports) as opposed to people like us that know we have HCM?

    I haven't been evaluated for sudden death risk but would really like to have that done. Can you tell me how I can arrange it?

    Thanks,

    Pete Baumgartner

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Fitness Limitations Following Ablation]

    Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)

    Date: 06-26-02 17:55

    Dear Pete

    When I say "be evaluated for sudden death risks", I mean that you and your HCM specialist (and I mean HCM specialist and not any old cardiologist) sit down and go over the known risk factors together. Some doctors say you need 2 or 3 factors to be considered for an ICD and many hospitals have a protocol to determine who is eligible for an ICD, however, as evidenced by the Craig thread here, sometimes only one risk factor is needed if it is "big" enough.

    Here is Lisa's list of Risk Factors:

    Family history of early/sudden death with HCM.

    History of cardiac arrest

    History of arrthymia - VT or repeat NSVT

    Mass hypertrophy - septal measurement of 3.0 or greater

    Adverse blood pressure responce on stress test

    Fainting/passing out -repetitive - (careful to evaluate for obstruction)

    NOT RISK FACTORS AT THIS TIME:

    Obstruction

    However, say you don't have any other risk factors but you have VT (ventricular tachycardia) a lot --well, you may want the ICD since VT has a nasty habit of turning into v.fib. Craig has a septal wall measurement of 3, but no other risk factors of great note, but he is getting an ICD.

    It is my understanding that you are already seeing an HCM specialist and had a successful ablation. It is highly likely that your doctor didn't see any risk factors (or enough) to warrant an ICD discussion. However, if you have not discussed the risk factors above, then by all means, print this out and talk to him about them.

    As for the 1%, I took that number from a presentation given at the HCMA meeting last month and I believe that the number was of the known HCM patient population, but I could be wrong. I'll have to check. Another stat: I don't know the total number of young athletes who die suddenly each year, but HCM is the number one cause of death in that population, the exact percentage I don't recall. Lisa probably has all of these numbers at the tip of her tongue because she is just like that.

    I hope this long missive helps you a bit.

    Sarah
    NOTE: This is a post from the previous forum message board.
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