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Hypertrophic Cardiomyopathy (HCM) Live Webchat Transcript

August 26, 2008

Harry Lever, MD
Miller Family Heart & Vascular Institute
Cleveland Clinic cardiologist and renowned expert on HCM

More information:

Cleveland_Clinic_Host: Some of you may be joining us after you heard about the chat on the 4HCM website. For those of you not familiar with HCMA, it is a great resource for patients and families. They are an organization formed in 1996 to provide information, support and advocacy to patients, their families and medical providers. For those who want more information on HCMA – here is their website - http://www.4hcm.org/WCMS/index.php. We encourage anyone to check them out.

Speaker_-_Dr__Lever: Let’s begin.


General Hypertrophic Cardiomyopathy (HCM) Questions

epalanski: What causes the scarring that is associated with HCM?

Speaker_-_Dr__Lever: We are not sure - but - we think it may be related to intimal dysplasia of the arteries.

epalanski: What changes can I expect as I age? I was diagnosed with ASH over 20 years ago. My annual echo has shown no changes since that time.

Speaker_-_Dr__Lever: You may be perfectly stable without change - but you should have regular follow up visits.

jwohara: after myectomy, do HCM still go into end stage? or remodel?

Speaker_-_Dr__Lever: It can possibly happen but the incidence is lower than if there was no surgery.

lasherdog3: Does HCM get worse in everyone over time? If so, is the cause increased thickening and/or fibrosis?

Speaker_-_Dr__Lever: It does not necessarily get worse in everyone. It may or may not be related to fibrosis. Each patient is individual.

ellie321: what is ash

Speaker_-_Dr__Lever: It is asymmetrical septal hypertrophy.

jwohara: End Stage HOCM, how common, transplant only cure. or can drugs improve condition?

Speaker_-_Dr__Lever: It depends on how sick the patient is. Sometimes we can get a response with drugs - but if the condition worsens, then the only option may be transplant.

JustClay: What is "apical" HCM and what other type(s) are there?

Speaker_-_Dr__Lever: Apical HCM is thickening of the tip of the heart. You can have thickening of all the walls of the heart or just one wall of the heart as well. It is highly variable.

lheicher: I am only to come to Cleveland Clinic once a year for check-ups. Should I seeing my local cardiologist for period holter monitors? Is 3 times a year alright?

Speaker_-_Dr__Lever: There is no real need to see someone 3 times a year unless you are having a problem. We usually do holter monitors once a year unless there is ongoing symptoms - then we may want to use an event recorder.

dennice: How do you know it is the end stage of HCM

Speaker_-_Dr__Lever: I see there are many questions related to this. Usually the left ventricle dilates and the function becomes less. Symptomatically the patient becomes more short of breath. It is not that common of an occurrence - probably less than 5 percent.


Genetics (Family History) and HCM

lkdill: Does it seem to make a difference which parent you inherited the HOCM gene from? Are you more likely to pass on to children if it is from your mother or father?

Speaker_-_Dr__Lever: No - it makes no difference.

JustClay: Dr. Lever, In a person who tests positive for a familial HCM gene, can you share with us any statistics/percentages of the likelihood for that person to actually develop HCM / CLINICAL diagnosis, vs. just being a carrier of the gene? Thanks.

Speaker_-_Dr__Lever: We do not have enough information at this time to provide that.

mommaddie: Family history- sudden death of Grandfather,Father and Brother, Sister-myomectomy, ICD. Should I be concerned with this FHX?

Speaker_-_Dr__Lever: You should see a physician for an evaluation.


HCM and Symptoms

kbose007_2: Why do I get severe SOB for few hours after meals on some days? What should I do to prevent that from happening?

Speaker_-_Dr__Lever: This occurs we think because blood is diverted to the stomach and may make the outflow tract obstruction worse. You need to be seen by an HCM specialist.

dannicki: How concerned should I be about leg edema? I was told that people with HCM is always in some degree of Heart Failure, is this true?

Speaker_-_Dr__Lever: If you are having swelling or other symptoms - cold feet (someone else asked this question) - then you need to see a doctor. This is not a normal finding with HCM.

JustClay: Besides a myectomy, what general recommendations can be made for a person to avoid progressing to heart failure? And what would be symptoms to look for if a HCM heart is beginning to fail?

Speaker_-_Dr__Lever: Worsening shortness of breath, peripheral swelling, waking at night with shortness of breath. Regular follow up appointments with testing also show if a heart is beginning to fail. Treatment is so individualized that one needs to be seen to determine the best course of treatment.

bucky123: I am confused, I have serious SOB on climbing stairs, but I can go like a banshee on my elliptical machine....level. What up?

Speaker_-_Dr__Lever: You need to be evaluated to determine the significance of this finding.

dannicki: I had an stress echo and produced a 56% gradient; when I went to do another stress two years later and couldn't exercise as long (chest pain) and may not have produced as high of a gradient. I was told that if I didn't produce a gradient, a myectomy wouldn't be an option. Why is this? My heart is still thickened (30.1) and I produced a gradient once before, does it matter if it does it again? Is it normal for that test to vary like that?

Speaker_-_Dr__Lever: The gradient can be highly variable but I am concerned you are having chest pain - and you need a thorough evaluation including cardiac angiogram.

bucky123: I just had a bout of pericarditus and spent Saturday in the ER....is this at all related to HCM?

Speaker_-_Dr__Lever: No - it is not related.

bucky123: My Cardio wants me to have a complete neurological work up done. I think he is looking for the needle in the haystack as I think the HCM is causing my dizziness. Any thought?

Speaker_-_Dr__Lever: It depends on what type of dizziness you are having - if you have lightheadedness or a feeling of spinning sensation. We need to see you to give you specific recommendations and thoughts about your condition.


Diagnostic Tests, Findings, and HCM

mommaddie: If the IVS measurement is 1.2cm and LVPWD is .6cm and Dr. says not a problem. What do you think?

Speaker_-_Dr__Lever: We would need to review the echocardiogram to determine the significance.

cmbcarab: If you test positive for an HCM gene, is a normal echo every few years sufficient or should it be a stress echo?

Speaker_-_Dr__Lever: In terms of how often - it depends on the age. If the person is going through puberty - then every year - then after that - every two to three years.

Speaker_-_Dr__Lever: If there is any suggestion of outflow tract obstruction then stress echo every two years is suggested. It depends on the clinical condition of the patient - as it may be more often.

lkdill: What is the normal septal wall thickness? And what is an acceptable gradient?

Speaker_-_Dr__Lever: Normal wall thickness is no more than 11 mm. Normally, there should be no gradient.

lasherdog3: Hi Dr. Lever, besides the septal thickness and gradient, are there markers you look at in an echo to determine if HCM is progressing?

Speaker_-_Dr__Lever: Mitral regurgitation is also important. We look at the thickness of the septum, the mitral valve, the gradient and the mitral regurgitation.

gfox_2: Post-myectomy, my gradient was obliterated, and I still have no murmur or other signs of obstruction. Do you recommend occasional echos, or does this only make sense if I start showing signs of obstruction?

Speaker_-_Dr__Lever: Occasional echos and holter monitors - at least once a year.

Cynaburst: What significance, if any, do elevated BNP levels have in HCM?

Speaker_-_Dr__Lever: It can mean that you are having heart failure and depending on how high the levels are - you will need to be seen.


Treatment of HCM: Myectomy, Alcohol Ablation

probbins: I have HCM, myectomy at CCF in 2003, and my echo this year showed some thickening of the septum. Have you seen this post-myectomy and what is the usual course?

Speaker_-_Dr__Lever: Usually that does not occur. You need to have the echo reviewed to see if you have evidence of outflow tract obstruction. You should be in touch with the physician who saw you at the Cleveland Clinic.

lkdill: Is cardiac rehab recommended after septal myectomy?

Speaker_-_Dr__Lever: Yes. We want them to do aerobic exercise and no weight lifting.

ellie321: Is it normal to still have SOB after eating even after a myectomy I am 10 days post opt

Speaker_-_Dr__Lever: In the immediate postoperative period you can still have shortness of breath and it should improve with time as the blood count improves and your chest incision heals.

unr1992: what treatments are there for a thick septum? I have only heard of alcohol ablation. Is that still a modern treatment? How thick does it need to be to consider that?

Speaker_-_Dr__Lever: First of all you need to have outflow tract associated with a thick septum. If you have that, we would prefer to do surgery - particularly if you are young. We do not feel that alcohol ablation gives a good enough result. The success rate is only about 75 percent. With myectomy, the success is 98 to 99 percent. We reserve alcohol ablation for the elderly patient who is too sick to go to surgery.

mellencm: Is the decision to have a myectomy based on gradient numbers, or a combination of gradient and how the patient feels? I had a myectomy one year ago. Now my gradient is 50 at rest/100 valsalva. I was experiencing terrible shortness of breath 6 months post op, which continued for 6 months. A redo myectomy was suggested. However in June, it was determined that I had developed amiodarone induced hyperthyroidism, and once that was treated with prednisone, I feel absolutely terrific. Since my symptoms are now relieved, it seems to me that there is no reason to have the redo surgery at this point. Your thoughts?

Speaker_-_Dr__Lever: It depends upon what your echo looks like and how you are feeling. IF the obstruction is less and you are feeling well - then no need for surgery. You may have had amiodarone induced hyperthyroidism which makes the obstruction worse.

LeighAnn: Is it normal after myectomy for the pumping function of the heart to be less than it would be for people without HCM?

Speaker_-_Dr__Lever: It usually should not be less. You should discuss this with your doctor.

cdalton: once you have surgery for the hypertrophic cardiomyopathy does this take care of everything or is there a possibility of having to have the surgery again

Speaker_-_Dr__Lever: Most of the time you do not need surgery again. The most common reason for additional need for myectomy is inadequate myectomy at the first surgery. There may also be problems with the mitral valve that were not addressed at the time of the initial surgery.


Medications and HCM

Fred: Can you give us your opinion (or any information) about statin drugs / cholesterol-lowering drugs and the research that has been done with HCM? And are there any research studies with these meds being done or planned with humans who have HCM?

Speaker_-_Dr__Lever: I do not have information on this. Please go to clinicaltrials.gov and do a search for more information.

bucky123:I have HCM and upon diagnosis my BP was OK.....for some reason I have developed low BP and every drug I am prescribed such as Verapamil, Metoprolol, etc. Just drives my BP lower. Any makes me dizzier than heck. Any suggestions on Meds I might want to try out?

Speaker_-_Dr__Lever: You need a very careful evaluation. We would be happy to see you if you would like to be evaluated at the Cleveland Clinic.

kbose007_2: Hello Dr Lever. What's the risk of taking Metoprolol 50mg twice daily along with Verepamil 80mg at bed time. I currently take Metoprolol, my doctor has recommended me to also take Verapamil.
Speaker_-_Dr__Lever: It can slow the heart rate too much - if you are requiring two drugs - then you should see a HCM specialist.

lkdill: What medications are normally prescribed long term after myectomy

Speaker_-_Dr__Lever: Usually beta blockers unless there is a history of asthma.

APULLER1971: From my research I believe I should not be given vasodilators for chest pain; but every time I go to the ER, I have to fight with the doctors and nurses not to administer the drug. Am I right to refuse or is this information outdated?

Speaker_-_Dr__Lever: If you have HCM, this is true. Talk to your HCM physician about what to do if you have future chest pain.

lasherdog3: I have heard a lot of positive things about Omega 3 supplements. Is there any reason someone with HCM should not take them?

Speaker_-_Dr__Lever: No. Always talk to your doctor before taking any supplements.


HCM: Activity and Exercise

lheicher: I have HOCM, diagnosed this past November at the age of 40. My birth father died at 37. I was told never to let my heart rate go above 110 and I'm on beta blockers to treat. I think that I'm doing VERY, VERY well with this disease overall. I feel good almost every day and now that the kids are back in school, I'm back into exercising (walking and when time allows, water aerobics). When I walk my heart rate is in the lower 90's and my legs are pretty fatigued. My pace is pretty quick (feeling at least) at about 3.7 on the treadmill. But, I miss jogging on the treadmill (I was doing it when I was diagnosed). Am I still allowed to jog - just stopping as my heart rate reaches 110? I obviously don't want to do anything stupid just to get in that 1/4 mile jog (which is all I can do and I'm at 110).

Speaker_-_Dr__Lever: Do not increase the heart rate above 110. You need periodic checks of your heart rhythm with a holter monitor.

ustewjt:My wife has HCM and we just relocated to the Phoenix AZ area from Ohio. Do you see any problems with living in places of extreme heat? Any advice or restrictions?

Speaker_-_Dr__Lever: She needs to maintain a very good state of hydration. She needs to be particularly careful in going out in extreme heat. IF she is getting dizziness, I would suggest she see a cardiologist well versed in HCM.

probbins: My question is about exercise with HCM...certainly there is SOB and difficulty exercising (even brisk walking) after meals or when tired but otherwise I feel okay. How much exercise is good? Do we want to stay in shape, reasonable weight etc. or are you really trying to get cardiovascular exercise and pushing the heart a little. All the meds are to slow it down and have it work less so the exercise is a little counterintuitive??

Speaker_-_Dr__Lever: If you are getting shortness of breath after eating - you need to see someone to determine how to proceed and what exercise would be best for you.

epalanski: What exercise regimen should I follow? I walk regularly, use a tread mill, and use the various machines in the gym. I was told that using weights may increase the thickness of my heart.

Speaker_-_Dr__Lever: Aerobic exercise - heart rate not to go above 100 -110 beats per minute. No weight lifting.


Pediatrics and HCM

JustClay: In a family whose HCM is strong and severe, please share your treatment recommendations for a 7 year old child who tests positive for the family's genetic HCM marker; Is there a recommended medication such as a beta blocker in the hope of preventing disease progression? Also, at what point should competitive sports be restricted for this child? Thank-you.

Speaker_-_Dr__Lever: We would need to evaluate the child's case in more detail to provide recommendations.

kjbarkman_2:Do you have an idea of how many children with cardiomyopathy are seen at Cleveland Clinic each year?

Speaker_-_Dr__Lever: No - I do not know the answer to this. However, we do see children with HCM - they can be seen in pediatric cardiology.

Pacemakers, Defibrillators and HCM

bprb61: does the left ventricle pacing help prevent further growth with obstructive hcm?

Speaker_-_Dr__Lever: No. The use of pacing in HCM was based on flawed data.

dennice: I have HCM, myectomy at CCF in 2007, lower area in heart could not be operated on. Now have pacemaker/defib pacemaker runs constant in lower heart to make sure beats stay at 60 beats; runs at 97% in upper to maintain 60 beats. Do I need to be concerned with pressure gradients? I have heard no mention from my doctors but see it a lot on the websites. What kind of outlook for my future am I looking at?

Speaker_-_Dr__Lever: You need to be seen by your doctor at the Cleveland Clinic to provide you with recommendations.

lheicher: Okay. I have one more question. How does someone know when they're a candidate for a defibrillator? I dread every needing one but I more dread not having one when I need it. Since my father died of SCA in his 30's does that make me have a pretty good chance of having to get one? I mainly just have PVC's but every once in a while I'll feel something really different and it'll pass but I never know what it is. I've heard people say that they were in "afib" last night of "vfib." How do they KNOW that? What does it feel like? Do those people go straight to the ER and someone tells them or what? I'd like to be more familiar with my beats. I just wore a 48-hour Holter in May and was told that it wasn't time ... yet.

Speaker_-_Dr__Lever: You need to have very careful monitoring. If there is a family history - then you need to be seen by a specialist. There are lots of causes of sudden death - it is not always HCM - but a family history warrants an evaluation.

sophiemacie: My 28 hr. old daughter has HCM but is not symptomatic. I have HCM and had a cardiac arrest and had an ICD implanted. Why would my daughter not be recommended to have an ICD also? Is it only suggested if she's symptomatic?

Speaker_-_Dr__Lever: It depends upon how thick the heart is, what her level of function is, and what we see on holter monitoring. We could evaluate her further.


HCM and Valve Disease

lheicher: I have the abnormal papillary muscle. What does that mean to me? It's very vague in all the writings.

Speaker_-_Dr__Lever: We are recognizing papillary muscle abnormalities that can result in outflow tract obstruction and we carefully look at that - we would be happy to see you.


Atrial Fibrillation and HCM

unr1992: what is the best treatment for chronic afib due to ASH, with min outflow obstruction, but enlarged atrium ( L and R)?

Speaker_-_Dr__Lever: A pulmonary vein isolation can be considered first and if that fails - a MAZE procedure.

unr1992: How common is paroxysmal or chronic atrial fib with mild HCM and no outflow obstruction? My mom, maternal aunt and maternal grandmother all had this and now it is my turn.

Speaker_-_Dr__Lever: It can certainly occur and it can be treated - Either with drugs, pulmonary vein isolation or if all else fails - pulmonary vein isolation.


Research

Lagjuly015: Hello Dr. Lever, I was wondering if there has been any new research on HCM treatment either surgical or pharmaceutical.

Speaker_-_Dr__Lever: we have observed a wide variety of mitral valve abnormalities as well as papillary muscle abnormalities and in some cases we have had to alter our surgical approach depending on the anatomy we see.

Speaker_-_Dr__Lever: No new pharmaceutical advances.

bprb61: can stem cells have any effect on reversing this condition?

Speaker_-_Dr__Lever: No - not that we know of.


How to Find a Doctor:

kbose007_2: How do I find a good doctor for HCM in town. Is there a site somewhere on the Web. I couldn't get this information in HCM official website.

Speaker_-_Dr__Lever: Please use the contact information from the HCMA website - Lisa Salberg can assist you.

kbose007_2: I have Hypertrophic Cardiomyopathy. I need to find a good doctor in Austin, my hometown. Do you have any suggestions/recommendations?

Speaker_-_Dr__Lever: Contact the HCMA organization. They should be able to assist you with specialists in your area.

bprb61: are there any HCM specialists in the Pittsburgh, pa area? or do you suggest making an appt with you?

Speaker_-_Dr__Lever: I would suggest making an appointment with one of our HCM specialists at the Cleveland Clinic.

Information on how to make an appointment:

Other Questions:

suzieq216: I have mitral valve prolapse with moderate to severe regurgitation...I have been closely watched by my cardiologist for the past two years but my question is that when should I have the surgery if right now the size of my heart hasn't changed and the only symptoms I have is palpitations and sometimes I think I feel the blood flowing backwards into my heart..I know my dr. wants to wait but also on the other hand, wants to do it before I have other problems..Therefore, what should I be looking for to know that it is time for surgery?

Speaker_-_Dr__Lever: We look for increasing heart size and development of atrial fibrillation. If any of those occur, we would recommend surgery. You need careful follow-up.

JustClay: What is "intimal dysplasia of the arteries?"

Speaker_-_Dr__Lever: It is an abnormality where the lining of the arteries is abnormal when we look at it under a microscope. It can cause some narrowing of the blood vessels.

Cleveland_Clinic_Host: Unfortunately we have to end the chat now, one of our HCM specialists would be happy to evaluate you and answer any questions individually

Cleveland_Clinic_Host: Thank you Dr. Lever for this lively discussion!!

Speaker_-_Dr__Lever: Thank you for having me.

Please note - we apologize for any inconvenience due to technical difficulty during this live webchat.

Technology for web chats paid in part by an educational grant from AT&T Ohio and the AT&T Foundation (formerly SBC).

Reviewed: 06/08

This information is provided by Cleveland Clinic as a convenience service only and is not intended to replace the medical advice of your doctor or health care provider. Please consult your health care provider for advice about a specific medical condition. Please remember that this information, in the absence of a visit with a health care professional, must be considered as an educational service only and is not designed to replace a physician's independent judgment about the appropriateness or risks of a procedure for a given patient. The views and opinions expressed by an individual in this forum are not necessarily the views of the Cleveland Clinic institution or other Cleveland Clinic physicians.

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