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Re: Severe Hypertropic Cardiomyopathy
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Re: Severe Hypertropic Cardiomyopathy

Posted By CCF CARDIO MD - MTR on November 21, 1998 at 10:44:47:

In Reply to: Severe Hypertropic Cardiomyopathy posted by Sherry on November 20, 1998 at 10:03:29:






My husband is 41 years old and has severe hypertrophic cardiomyopathy.  He is very overweight.  He weighs around 350 pounds.  He has trouble with shortness of breath, lack of energy, fluid retention, and sometimes short blackout spells.  His doctor wants him to lose weight but it seems to be an everending battle.  In one day his ankles will swell up and he can gain as much as 3 or 4 pounds and I know it's just fluid.  His doctor said that he can't have fluid pills because this would dehydrate around his heart.  All information I have read about cardiomyopathy has said that fluid pills are recommended because so much fluid is retained.  Why would our doctor not want him to have them.  Could it be that his is such a severe case.  He has has to quit his job and is now on 100% disability because of his heart.  We know it will never get better and medication is about the only way to regulate his problem.  He takes Veralan and Toprol each day.  I know the medicine he takes slows down his heart and his doctor wants him to walk.  That is the only exercise that he can do.  It seems like hot weather makes his condition worse.  His metabolism is practically dead because all the medicine slows down his heart.  Is there anything he can do to help him lose weight besides just walking.  He has trouble even doing this because I'm sure of his size but even cutting down, he never seems to lose but a couple of pounds.  Is the prognosis worse for severe hypertrophic cardiomyopathy patients that other kinds of cardiomyopathy?  He was diagnosed with this condition 2 1/2 years ago.  His dad and sister also have a mild case of it but because of the outside heavy labor work that my husband did, the doctor said this caused him to be four times worse than his family.  Since my husband seems to keep his weight on the high side, his blood pressure is always normal, will this result in him going down hill as the years go by.  Right now our doctor has suggested that in the next 10 years get a house on one level.  We have a lot of stairs to get around in our house.  Our doctor has also said that a heart transplant will never happen.  Could this be because his heart is a hereditary problem and that to get another heart would just do the same to a new heart?  At the rate of the thickening of the heart muscle and his size, will this be a terminal disease if everything stays the same as right now.  By this I mean taking his medicine each day and still weighing around the same and getting very little exercise because he says it wears him out and he has a hard time breathing?



   _
Dear Sherry, thank you for your question.  Your husband has a difficult constellation of problems: hypertrophic cardiomyopathy (HOCM) with severe symptoms, obesity, and exercise intolerance.  Obviously, weight loss would be extremely beneficial to him, but the HOCM causes him to be short of breath with even slight exertion and the medications he needs to take for the HOCM (beta blockers and calcium channel blockers) slow his heart rate down which makes exercise difficult.  HOCM is quite different from other forms of cardiomyopathy.  In HOCM, the left ventricle is hypercontractile while in other forms of cardiomyopathy, the ventricle is hypocontractile.  The end result of both forms of cardiomyopathy is that fluid accumulates in the lungs and peripheral tissues.  Diuretics should not be given with HOCM because they might reduce the intravascular volume of blood.  If this occurs, the obstruction to the outflow of blood in the left ventricle ( the main problem in HOCM) worsens because there is less blood to distend the left ventricular outflow tract.  With other forms of cardiomyopathy, the main problem is vascular congestion due to a dilated, hypocontractile left ventricle so diuretics are a useful therapy.  Unfortunately, his prognosis does appear to be poor since his HOCM is so severe and since his weight may limit his therapeutic options.  Obviously, your husband is failing medical therapy so other interventions need to be considered.  Presently, there may be two options for him: alcohol septal ablation or septal myomectomy.  The main problem with HOCM is a hypertrophied left ventricular septum which causes the left ventricular outflow obstruction.   A relatively new technique to reduce the size of the septum is called alcohol ablation.  During this procedure, a modified angioplasty is done.   A catheter is inserted into an artery in the groin and is then positioned into the branch of a coronary artery that supplies blood to the septum.  Then, absolute alcohol is infused into this branch to occlude and scar down the branch vessel.  This procedure causes a "controlled" heart attack, but the expected result is a thinning of the septum as the tissue in the septum scars down after the blood vessel is occluded.   Septal myomectomy is an open-heart surgical procedure during which the surgeon resects a portion of the septum to enlarge the left ventricular outflow tract.  Open heart surgery is a very invasive procedure and obese patients have worse outcomes after any type of open heart surgery, so your husband may not be a candidate for a septal myomectomy.  Likewise, the upper weight limit for an alcohol ablation is around 300-350 pounds because the table that holds the patient can't support more weight than that.  For these same reasons and because there probably isn't a donor heart large enough to replace your husband's heart, he most likely is not a candidate for heart transplantation.   We have a cardiologist here at the Cleveland Clinic named Harry Lever who is an expert on HOCM.  Dr. Lever would be happy to evaluate your husband and he can be reached at 216-444-6970.  We perform both septal alcohol ablation and septal myomectomy here so both procedures would be potentially available to your husband.  

I hope you find this information useful.  Information provided in the heart forum is for general purposes only.  Only your physician can provide specific diagnoses and therapies. Please feel free to write back with additional questions.  Good luck!
If you would like to make an appointment at the Cleveland Clinic Heart Center, please call 1-800-CCF-CARE or inquire online by using the Heart Center website at www.ccf.org/heartcenter.   The Heart Center website contains a directory of the cardiology staff that can be used to select the physician best suited to address your cardiac problem.

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