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HCMA FORUM ARCHIVE
12-17-2002, 11:08 AM
[Does it keep getting worse?]

Author: Chris Holmes (---.sb.sd.cox.net)

Date: 02-14-02 16:53

My name is Chris, I'm 31 and just recently diagnosed with HOCM. I definitely have a few questions that my cardiologist doesn't seem to be able to answer.(He's a good cardiologist and is helping me a lot, but I'm just trying to get as much information as I can.) At first the symptoms were only very occasional when I excercised. I would go out most days and feel fine, but every so often I would get short of breath easily and experience chest pains that would shoot down my arms. At the time I thought it was no big deal. Most times it was when I was hiking with a backpack, and I thought the straps were too tight or something. ( Probably a bit of denile thrown in as well.) Then one day I went surfing and all of a sudden I was having trouble breathing, and I heard gurgling noises coming from my chest. I went to the beach and sat down for a while and started to feel better, but I kept coughing up blood. This is when I finally went to the doctor and was told I have this condition. After that day, I went from only very occasionally having symptoms (once a month or so) to having them at all times. A flight of stairs would leave me feeling tightness in my chest. I guess my question is, why would it get so markedly worse in one day? Also, does this mean that the intraventricular wall has grown more, or is there a different reason why the symptoms are now present when they were only occasional before? Is there a way to tell if the condition has stabilized? I've got a million more questions, but I guess I'll leave it at that for now. Thanks in advance for any info anyone can provide. Here's to everybody with this condition feeling a little better tommorrow.

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[Re: Does it keep getting worse?]

Author: Jerilyn (---.tnt1.joliet.il.da.uu.net)

Date: 02-15-02 20:39

Hi Chris,

I am told that once your heart muscle enlarges to certain degree it does not get worse. However, like you, I fought my symptoms for a couple of years before I ended up in the hospital and found out that I had HOCM. My brother died from HCM suddenly at the age of 46 while he was hiking, I am 49. We did not know he had HCM until the autopsy report.

My cardiologist says that some patients never have any, or have very few symptoms. While others experience chest pain, breathing difficulties and fatigue. His theory is that as we age our hearts have had to work harder and they become more "leathery" and less flexable. This causes symptomes in varying degrees.

Like you, I find HOCM to be very annoying. One day I will be OK, with little chest pressure and my breathing will be good. The next day I will feel as if an elephant is sitting on my chest and just moving across a room quickly to answer the phone will make me gasp for air. It's hard to tell if I am getting worse, or if the meds I take to regulate and lessen my heart's contractions are at fault. (verapamil)

I think stress plays a part in how I feel and so does attitude. I try to remain positive and have had to find another job to lessen my stress level.

I am also more aware of how my heart is acting through out the day. If it starts to beat quickly, or if the pressure becomes worse, I try to sit and rest a bit. If I eat a very sweet meal, like a waffle with syrup I've noticed my heart beats faster and chest pressure builds, so food may be a factor too.

I guess what I am trying to say, is that I've found the best way to deal with this HOCM thing is to be aware of what your heart is trying to tell you. But, I must admit, there are days when I feel crumby and I cannot think of anything that may have triggered it. Mr. Heart is just cranky, and that is so frustrating.

I hope I've helped a little. I know I feel better. Keep the faith.

Jerilyn

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[Re: Does it keep getting worse?]

Author: T (---.divernon.hansoninfosys.com)

Date: 02-16-02 23:29

Chris-

I'm 31 and I was diagnosed in the last year as well. This condition appears to affect people differently, so I don't think anyone can say that you will not get any worse or that you will. It sucks, I know. But it's a fact.

If you join this organization (which I would highly recommend) you get a book about the condition. In the book, it states, "once hypertrophy is in place in mature adults, there is no evidence that it will increase further with aging. Therefore, the fear of many patients that their heart will continue to thicken through life, ultimately resulting in a catastrophic event, is competely unfounded. In fact, there is some evidence that wall thickness might decrease very slightly with advancing age in adults."

This sounds like great news and I try to be optimistic about my condition after reading information like quoted above, especially when it comes from some of the top experts who treat this condition. Like you, my symptoms have gotten worse, though not terribly. I'm still quite active in a few moderate-level sports. The bottom line though is that only God knows and you must LIVE with this condition and don't let it direct your life. It's not easy. I think about it A LOT because my pulse is so strong, but it's something I am learning to live with, though it does take time and the support of family and friends, but most importantly your doctor(s).

Good luck to you. Join the HCMA, frequent these boards and keep us all posted. We're all here for you.

God bless-

Tom

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[Re: Does it keep getting worse?]

Author: beckley (---.muaa.akrn.chcgil24.dsl.att.net)

Date: 02-18-02 13:25

Dear Chris,

I'm 33 and was diagnosed at 13. The progression of everyone's hypertrophy is different.

You should have had an echocardiogram, which -among other things- measures how thick the left ventricle actually is. Most HCM patients get echos on a regular basis, from every six months to 2 years, depending on their situation. This is the mechanical method of determining if you are getting "worse" -if the thickness keeps increasing.

As for why the HCM seemed to get so bad all of a sudden, I would point out a few things. First, you did have symptoms for a while which you discounted, and finally your heart just hit the proverbial wall of what it could tolerate. Also, HCM is something that is genetic, but the actual growth of the heart muscle can take a long time to become symptomatic --some people don't even get diagnosed till they are in their 50s or 60s. It was probably your active lifestyle that sped this up.

You may need to adjust your activities to accomodate your hearts limitations. You may want to look into ablation or myectomy as these procedures --if you are a candidate-- may allow you to get back closer to your previous speed.

It is really important to listen to your heart from now on and not ignore the signals it is sending you to slow down.

Keep us posted on how you are doing.

Sarah

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[Re: Does it keep getting worse?]

Author: John Rogers (---.riverview.net)

Date: 03-04-02 19:41

I was recently diagnosed with this problem at age 57. I hope to be referred to

The University Of Mich Heart Clinic soon. I have had symptoms for at least 10 years but didn't know what it was I'm having difficulty understanding how much work I can do such as lifting etc.Do I just continue on until I become breathless then stop and wait to recover then continue on? What type of exercise can I do to improve this condition if any. I'm about 70# overweight would weight loss help. More questions than answers at this point. I'm counting heavily on the people at Uof M to shed some light on this. For instance I'm on Beta Blockers is that causing my loss of energy??

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[Re: Does it keep getting worse?]

Author: sarah beckley (---.dsl.mindspring.com)

Date: 03-07-02 02:59

Dear John

Welcome. The beginning is the hardest part, but you are in the right place.

Beta blockers lower your adrenelin (sp-sorry) which can cause you to have "less energy." You may need to try a couple different ones to see which works best for you.

Losing weight will definitely take a lot of strain off the heart. I mightily recommend it.

You need to talk to your doctor about exercise and how much you can do and what to avoid/look out for. Eating better (low fat, low salt) is the first step and walking is great and low-impact, just to get you started.

Everyone is different and you need to listen to your self and your heart to know when you are doing too much and pay attention to chest pain, rapid heart beat, dizziness, etc. All signs that you need to stop.

take care and keep us posted. (Please start a new thread when you have a new question so I don't accidentally over look it.)

Sarah

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[Re: Does it keep getting worse?]

Author: Susan (---.ceg.com)

Date: 03-07-02 15:13

Dear John,

I could have written your message myself! I was diagnosed with HCM last year and I just turned 50 this month. When I was in my twenties my heart would beat so fast I thought I was going to pass out. For years they told me I had mitral valve prolapse. I would go months without any symptoms and then wham I would have rapid heart beats, chest and arm pain for weeks. When I was 49 though the symptoms got worse. I actually would get so dizzy I came close to passing out several times and this was just sitting in a chair. I finally told my doctor I had to find out what this was and he sent me to Cleveland Clinic. Like you my main fear is will it get worse as I get older. The medicine I take ( Atetenol) really helps but this past 3 months I have had to increase the dosage per day to relieve the symptoms. Does this mean that it will quit working and I will have to find another med to take. I can go weeks with no symptoms and feel almost normal then wham I get the symptoms back for weeks. I have found that caffeine is a big no no and alcohol. Stress will make you feel lousy too. I guess what I have found is that you just have to get in tune with body and it will tell you everyday what works and what doesn't. I'm still learning but I will say this message board is soooo much help!

Susan

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[Re: Does it keep getting worse?]

Author: sarah beckley (---.dsl.mindspring.com)

Date: 03-07-02 23:13

Dear Susan

I'm right there with you. I can't go without 8 hours of sleep or POP --a.fib. Not enought water? POP too much anxiety? POP Wine? forget it. caffiene? ditto

I wouldn't worry too much, as that is bad for you too. As long as you take care of yourself, you are doing all you can. Yoga is awesome or tai chi or stuff like that really helps.

Atenolol can be good stuff but it is very common for people to have to change drugs every so often. I ran through about three drugs before I found Norpace and that worked for ten years and quit. Then I tried a bunch of stuff again before I found dofetilide. So I'm hoping that will work for ten more years and then they'll have invented something else!!

Take care,

Sarah

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[Re: Does it keep getting worse?]

Author: Lucho Monserrate (---.com)

Date: 03-16-02 10:15

Hey Tom:

Just wanted to ask you what sports are you actually participating in. I am 39 , male and just started having symptoms a few months ago. Diagnosed with HCM with mid cavity obstruction.I have always been pretty active , but also I have done more than my share of partying. Why and how I am still around after some of those parties, is hard to understand. Now that those days are over, I just want to stay fit and keep in shape. I am taking both Atenolol and Verapamil. I have neevr passed out or anything close to it. So hopefully I will be able to do some fun things.

Thanks, Lucho

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[Re: Does it keep getting worse?]

Author: Jon (---.proxy.aol.com)

Date: 04-05-02 18:55

Thanks for your information on whether it gets worse. I just was diagnosed last week, at the age of 64, and that was my first question. Is anyone out there that has been diagnosed late in life? I've continued to play tennis but stopped playing singles and with a mild dose of beta-blocker, so far so good, no pain. Without the beta-blocker there was a pain every point. Anyone who exercises competitively in any sport?

Jon