Harry Lever, MD
Medical Director, Hypertrophic Cardiomyopathy Clinic, Department of Cardiovascular Medicine, Cleveland Clinic Miller Family Heart & Vascular Institute
Thursday, September 1, 2011 - Noon
Hypertrophic cardiomyopathy (HCM) is a complex type of heart disease that affects an estimated 600,000 to 1.5 million Americans, or one in 500 people. It is the most common cause of sudden cardiac death in people under age 30. Dr. Harry Lever answers your questions about HCM.
Cleveland_Clinic_Host: Welcome to our "Hypertrophic Cardiomyopathy" online health chat with Harry Lever, MD. He will be answering a variety of questions on the topic. We are very excited to have him here today! Thank you for joining us, let's begin with the questions.
Dr__Harry_Lever: Thank you for having me!
Symptoms of HCM
Virginia: I am a 59 yr old HCM patient. In June I had an Ethanol Ablation to relief the extreme chest pains and chest pressure that had become debilitating. The procedure created the need for a pacemaker. I am dependent. The surgeon felt that the procedure successfully lessened the obstruction. Some pain relief has come but I have been disappointed that I still have chest pains and was told I would always have to keep a sedate lifestyle because once diagnosed with HCM a patient is always at risk of sudden death. Before this I had no other health issues but feel this inactivity will further deteriorate my health. Can the thickening of the Septum (my past condition) return? Is this treatable in other ways? normally the case for HCM patients?
Dr__Harry_Lever: This patient needs a thorough evaluation, sometimes the alcohol ablation can be unsuccessful and symptoms can return.
jpow717: I have HCM non obstructive. I have a defibrillator because of VT. I also suffer from severe bouts of fatigue/tiredness. Is this a typical symptom of HCM? If so is there anything I can do to combat this issue. I have also gone for a sleep study that reveled mild sleep apnea. I'm on a low dose of verapamill 120mg a day.
Dr__Harry_Lever: You should be seen for further evaluation as there are complicated issues.
miresident: Can excessive sweating be a side effect of HCM patients? Gynecologist does not believe it is hormone related at this point ... has been ongoing condition for approx. last 8 yrs ... it affects my daily activities.
Dr__Harry_Lever: Excessive sweating can be a side effect of hypertrophic cardiomyopathy.
shirleym: I get chest pain when I walk, is this normal having HCM
Dr__Harry_Lever: It can occur with hypertrophic cardiomyopathy, but you need an evaluation if you are having this symptom.
clc1987: I had an extended septal myectomy w/ mitral valve repair last Dec 29th, and I seem to have visual auras but do not develop a migraine after. They go away if I close my eyes for 5-10 minutes. Is this related at all? I used to be a migraine sufferer and occasionally have one, but I started experiencing the visual symptoms before the myectomy and now have. seems like a couple of times a week. the only medication I take is 25 mg Toprol XL daily and a low dose aspirin. Thanks for your time.
Dr__Harry_Lever: That is not a side effect of surgery and I would recommend an evaluation with a neurologist who specializes in migraine headaches.
wjs360: During the last 6 weeks my blood pressure has become uncontrollable. I dx with HOCM in 2009. Septal myectomy at CCF in oct 2009. AICD Dec 2009. 61 yo male. on lisinopril with hctz twice a day, sotolol 80mg bid, diltiazem 240 mg was just added BP 170/110 on average
Dr__Harry_Lever: You need an evaluation to determine the most appropriate and best treatment options for you.
jackieo54: I had a myectomy 2 years ago and feel pretty good. Are there any symptoms I should watch for that would cause any concern or is there any limitations I should be aware of i.e. exception or exercise
Dr__Harry_Lever: If you get chest pain, shortness of breath, or dizziness, that is a cause for concern and should be reported to your physician.
jvaldez: After my myectomy last year, I've noticed my hands are often cold, is this a symptom of HCM? Poor blood circulation?
Dr__Harry_Lever: Sometimes this can be related to medication and should be further evaluated.
peach502: I submitted a question previously (peach502). After my ethanol ablation for HCM in June the surgeon said the septal gradient has gone from 100 to 35, but that I can never expect to exercise and exert because the gradient can increase again - always a HCM patient. I have less shortness of breath, but still have chest pains on occasion. Is this normal after 2.5 months?
Dr__Harry_Lever: If you continue to have symptoms, you need to be evaluated - please report these symptoms to your physician hcmalisa: is it true that many patients with HCM are unaware of "symptoms" and simply thing what they are feeling is "normal". That is not uncommon.
Genetics, Family History and HCM
Stephanie: What is the role of genetic testing for people with history of family history of hypertrophic cardiomyopathy (HCM)?
Dr__Harry_Lever: If we know that one family member has the disease, we look to other family members to see if they are positive for the gene; if negative, they should not be concerned; if positive, they will need follow-up and potentially treatment for this disease.
Jessica: Dr. Lever, I have HCM and had Septal Myectomy at CC. I now have a 23 month old daughter. I am aware of the 50% chance that I have passed the disease down to her as my mother did to me. She is not showing any signs at this point and her pediatrician has not heard a murmur. When is the appropriate time to have my daughter tested by a pediatric cardiologist? Do you recommend genetic testing on children (it is expensive)? If so, how accurate is the test?
Dr__Harry_Lever: You should be gene tested - if the finding is positive, then a thorough evaluation is needed; initial testing may be expensive, but is frequently covered by insurance.
jlp: Tests confirm that I have 2 mutated genes that could be causing my HCM. Since I have 2 bad genes instead of only 1, am I going to much worse off than if I had only 1? I'm 34 and feel no symptoms.
Dr__Harry_Lever: Sometimes patients with two genetic abnormalities have more difficulty than those patients with only one, but not necessarily - each patient is different
Daniela08: Is HCM always inherited to your kids? I’m a 30 year old woman who was diagnosed at 21. I’m now thinking of having babies and would like to know what are the risks of getting pregnant as well as chances of passing it along to my kids. My mom doesn’t have the condition
Dr__Harry_Lever: Before deciding on pregnancy, please seek an evaluation with someone who specializes in hypertrophic cardiomyopathy; the risk of passing this disease on is about 50%.
heart08: are you currently able to test for every gene variation for HCM?
Dr__Harry_Lever: We are able to test for all of the known genes.
Jessdeg3: I have HCM and had Myectomy at CC. I now have a 23 month old. At what age should she be evaluated by a pediatric cardiologist and do you recommend genetic testing?
Dr__Harry_Lever: Please have her checked now and in another three years unless she develops problems and certainly at puberty.
heart08: can one have some of the symptoms of HCM without having the physical attributes, if one has tested positive for having the genes?
Dr__Harry_Lever: Usually not, if you do not show signs of the disease, usually no.
Daniela08: and if the disease is passed along to your kids, is there any genetic therapy that could solve this?
Dr__Harry_Lever: No, unfortunately there is not.
shirleym: My brother had HCM then IHSS, he died pulling out of his driveway they said he had blood coming from his nose eyes, and ears. what could have happened to him, the coroner said his blood was very thick also
Dr__Harry_Lever: Sorry for your loss, but it is not possible to know with the information you have provided.
jeigel6: My previous question with the 18 year old gene positive son with 1.4 thickness. Doctors at Cinci Childrens told me 1.4 is in the "grey zone" for HCM but with being gene positive that trumps the "borderline grey zone. Therefore they have started him on Atenolol 25 mg daily. Previous answer was it may not be true HCM being borderline HCM. So now I have some confusion on starting him on medication. He is not due for another echo for 6 months there.
Dr__Harry_Lever: Sorry, we missed the gene positive statement; please follow the guidelines set by your physician as he has had the benefit of evaluating your son.
Diagnostic Testing – Tests and Results
slick49: I have Cardiomyopathy and on my last Echo it showed Pseudonormal pattern of the LV filling. What is this and effect does it have on my heart health. Also the Echo showed Mildly dilated right and left atrium, Mild concentric left ventricular hypertrophy, Ventricular wall thickness is mildly increased, Mild mitral valve regurgitation, Moderate tricuspid regurgitation, Mildly elevated pulmonary artery systolic pressure, LV ejection fraction is estimated to be 60 to 65%. Thanks for your answers. Slick 49
Dr__Harry_Lever: The pseudo normal can go along with left ventricular hypertrophy; by itself, there may be little concern, but not sure what you mean by mildly elevated systolic pressure, and we would need to know how thick the heart is.
JK: I'm 60 and was diagnosed with hypertrophic cardiomyopathy 3 years ago. I have never had symptoms, but was checked with an echocardiogram because my 83 yr old mother was diagnosed. I also had a genetic test that indicated I had the bad genes. I have a very low fat diet and have exercised (primarily running) most of my adult life without symptoms. I continue to run 4-5 miles per day without symptoms. my resting heart rate is about 53. My heart rate while running varies depending on the terrain, but on a flat run is about 120. On a steep hill it could go up to 150. In all cases it recovers by more than 20 beats per minute. Are there other test I could/should do beyond the annual echocardiogram. If so, what tests would I get if I came to the Cleveland Clinic, which is a possibility for me. Thanks for addressing my question and for holding this session.
Dr__Harry_Lever: We would do an MRI scan and a stress echocardiogram and a Holter Monitor.
jeigel6: My 18 year old son is gene positive and recently an echo showed septum thickness of 1.4, therefore giving him a diagnosis of HCM. I was told the cardiac MRI showed no myocardial scarring which is a positive sign. Can you explain this scarring, how it occurs and how it affects the HCM patient?
Dr__Harry_Lever: It is thought that myocardial scarring is a result of episodes of decreased blood supply to the heart muscle and is related to how thick the heart muscle is; your son needs follow-up with repeat echocardiograms. Septal thickness of 1.4 is borderline for HCM; if he is doing heavy weight lifting or other body building, he should stop that and be retested in 6 months, as this may not be true HCM
jvaldez: I just had a chest X-ray and the doctor said he said "Ascending thoracic aorta appears prominent." I was told by other HCM patients that this could be the result of my myectomy (August 2010, Cleveland) as the surgeon has to go through the Aorta to get to the septum. Is this a possibility why it's enlarged?
Dr__Harry_Lever: Usually not - we would be happy to see you back for evaluation.
Prognosis and Follow-up
RGam: I'm a 69 year old male. My father had angina and then a heart valve replaced along with a triple bypass and pacemaker when he was in his 80s. He lived another 10 years and died at age 92. Heart disease seems to run in my father's side of the family. I have recently been diagnosed with mild aortic stenosis along with mild hypertrophic cardiomyopathy. I had mild symptoms of "shortness of breath" on exertion with no other symptoms. I have put on metoprolol 50mg BID. My cardiologist thinks I might need a valve repair or replacement in 10 to 15 years. What is my long term prognosis? Would you expect my quality of life to dramatically change during the remainder of my life? I am very active...golf, bicycling, walking, other mild exercise.
Dr__Harry_Lever: Unfortunately, we cannot determine the long-term prognosis without seeing you first for an evaluation.
BrooksK: My HCM has actually improved; what, if anything, might help that trend to continue? Drug regimen? Diet? Exercise? Luck?
Dr__Harry_Lever: All of these factors can help in your improvement - follow-up with your physician and follow his recommendations.
pamr: I had a myectomy at CCF 8 yrs ago- and was back to see Dr. Jaber this spring...love him and the care there but my insurance won't pay to have me come back unless there is an issue. No valve surgery yet- currently a meds adjustment and addition of Lasix has done the trick...but I do need a new ICD in the next few weeks (I'm 100% paced w heart block). I need a high voltage model- Medtronic now but Guidant in the past. Forgot to ask while I was there...any new technology I should be aware of and do you have a current favorite model?
Dr__Harry_Lever: Please call Dr. Jaber's office for assistance
Exercise and Activity
patmcg: I had a myectomy 2 yrs ago and I am doing sixty minutes of cardio elliptical 5x a week-- feel great--- can I lift some light weights?
Dr__Harry_Lever: No more than 10 to 15 pounds for toning of the muscles - and no bench pressing.
jlp: Doesn't a person's own individual strength determine how much weight they can safely lift during weight training? If a person is not naturally very weak then they might not strain with only 15 lbs weights.
Dr__Harry_Lever: I do not believe in heavy weight lifting for patients with thickened heart muscles.
jvaldez: In regards to weight lifting, my HCM specialist here locally said I shouldn't lift more than 50 lbs when working out. Does the weight limit vary or is it 10-15 lbs for everyone with HCM (had my myectomy with Dr. Lytle last year and saw you as well).
Dr__Harry_Lever: I do not like weight training for patients with hypertrophic cardiomyopathy.
clc1987: I had a septal myectomy last December, and walk for exercise, but would like to go back to Pilates Yoga which uses core strength. Push ups are a part of this, but probably only 10-30 in 1 session. Are push ups recommended?
Dr__Harry_Lever: I would not recommend push-ups.
jvaldez: What effect does weight lifting have on an HCM heart?
Dr__Harry_Lever: Theoretically it can thicken the heart more by increasing the blood pressure.
miresident: In exercising with HCM (mainly walking) is it OK to continue exercising even if you get winded and a little short of breath?
Dr__Harry_Lever: If you are getting symptoms, it is best to seek evaluation.
sandy3135: Can long term use of verapamil cause spells of feeling lightheaded, chest pain, shortness of breath, impaired thinking ability and momentary feeling like I am about to pass out or is this just part of HMC.
Dr__Harry_Lever: Verapamil can cause light-headedness, but in some circumstances but usually not chest pain and shortness of breath and you need further evaluation, which we are happy to offer.
JudyAB: Does Prednisone, when taken for a respiratory illness (or any other short-term disorder), cause any permanent damage to the heart when it precipitates awareness of stronger heartbeats, pressure, and significant shortness of breath? ( In an HCM heart of course)
Dr__Harry_Lever: Short courses of prednisone usually do not cause permanent heart damage, but if taken over the long term, there is some risk of hypertension and coronary artery disease.
creynolds: I recently underwent a septal myectomy and maze procedure at the Cleveland Clinic. My cardiologist has continued me on Toprol (beta-blocker). Is there a long term need for such medication? Thank you.
Dr__Harry_Lever: Yes, I believe it should be continued.
JK: I asked an earlier question about additional tests. Diagnosed 3 years ago. No symptoms. Have the bad gene. Run 4-5 miles per day. Heart rate recovers quickly. Resting HR about 53. Was given 25 mg metoprolol for slightly elevated BP (130ish). Started at 12.5, but it dropped my HR into the mid 40s. Now taking 1/4 of the 25 mg, about 6.25 mg. My BP is very now good 110/ high 60s. Am I getting any HCM benefit from the 6.25 mg of metropolol . I think the BP drop may be due to my exercise and diet. Thanks.
Dr__Harry_Lever: We would need to see you in evaluation to better answer your questions.
heart08: Many of the anti arrythmics have bad side affects, can one with HCM afib or vt forgo trying them out and try an av ablation with a pacemaker implantation?
Dr__Harry_Lever: Frequently AV node ablation and pacemaker is not sufficient and medications are required; we do not recommend AV node ablation unless everything else has been tried.
clc1987: is it recommended to take low dose aspirin for the rest of my life after a septal myectomy?
clc1987: I’m just questioning the answer to there is not a need to take the low dose aspirin after a septal myectomy, CCF is where I started taking it, was that just to prevent clotting after surgery then?
Dr__Harry_Lever: We usually do not give aspirin unless there was another medical reason for it; if you have further questions, please call my office.
Brenda: I was a patient at the Cleveland Clinic 3 years ago and I had a septal myectomy and pacemaker placement. My cardiologist has me on coumadin. I was wondering if I will have to continue on this for my lifetime.
Dr__Harry_Lever: From this question, it is not clear why you are on Coumadin and I would only continue it for life if you have atrial fibrillation; we would be happy to see you for an evaluation; appointment number is 216-444-6697.
heart08: I am on coumadin, and I was under the assumption that if one has HCM are they not more predisposed to having blood clot because of pooling in the septum because of lower ejection fraction.
Dr__Harry_Lever: Most patients with HCM do not have low ejection fractions, though a few do; it is important to know what the indication for starting the Coumadin was.
Daniela08: If successful, what are the benefits of having an ablation? I’m scheduled for one next Wednesday because my HB went up to 250 twice in the past 3 weeks and my ICD shocked me. I have HCM. Also, what are the long term effects of being on Coumadin and do I have to take it for the rest of my life now?
Dr__Harry_Lever: I assume that the kind of ablation you are referring to is a pulmonary vein isolation ablation and not a septal myectomy and the long term side effects of Coumadin are bleeding if the Coumadin dose is not well-controlled.
retiredtechie: Are we close to the day when we can check for appropriate doses of coumadin at home like diabetics do?
Dr__Harry_Lever: It can be done now - please speak with your physician about this.
Pacemakers and Defibrillators
Pauline: Should individuals with HOCM undergoing aortic valve replacement have a dual chamber pacemaker implantation, and, or septal myomectomy as well to optimize outcome?
Dr__Harry_Lever: Pacemakers are only placed when necessary, and septal myectomy is only done when the septum is thickened and there are signs of left ventricular outflow obstruction.
retiredtechie: What's an icd?
Dr__Harry_Lever: An implanted cardiac defibrillator.
Heart Surgery: Myectomy and Other Heart Surgeries
fran: What factors should be used to determine if a myectomy is needed, specifically in a case where an ICD combined with medication is controlling symptoms?
Dr__Harry_Lever: If the ICD and medications are controlling the symptoms, there may be no indication for surgery.
retiredtechie: I have HOCM. I'm having a TEE next Wednesday to check blood flow and valve functions. My current thinking is open heart surgery should be more than correcting symptoms and more about longevity of life, since it is such a serious operation Can you respond or offer what considerations the patient needs to review before deciding to go forward with open heart surgery?
Dr__Harry_Lever: There is evidence in the literature to say that with successful myectomy, you may live as long as the general population.
LindaS: Dr. Lever. At my annual eval done at 3 yrs post myectomy, my ECHO looked great and didn't even mention HCM. What are the recommendations for post myectomy evaluations in terms of frequency and testing to be done?
Dr__Harry_Lever: You need to be seen in evaluation once a year.
locdoc524: I have been recently diagnosed with HOCM. Do you recommend myectomy for correction or Ablation
Dr__Harry_Lever: We only recommend myectomy or ablation when there are symptoms that interfere with your ability to function.
Locdoc524: Why do you recommend myectomy or ablation (whichever is your answer)?
Dr__Harry_Lever: We feel that myectomy is the preferred procedure in reasonably healthy patients because it gives the best long term results.
hcmalisa: can you explain the details as to how to make a choice between myectomy and ASA?
Dr__Harry_Lever: The most important factor for determining acceptability for alcohol ablation is the anatomy - there should be no co-existent coronary artery disease; there should be septal thickening that does not exceed 25 mm or is less than 18 mm and there should not be intrinsic mitral valve disease. We still feel that surgery gives a better long-term result overall.
peach502: Are there complications with a myectomy if an Ethanol Ablation has already been done?
Dr__Harry_Lever: There is very high likelihood that you will need a permanent pacemaker.
jlp: So, if an adult patient has a septum of 3 cm but little to no obstruction and doesn't feel symptoms then you do not recommend a myectomy, correct?
jpow717: I have a son that is 7 months old. he has obstructive but no symptoms and the doctors at Columbia are suggesting a myectomy. is that wrong?
Dr__Harry_Lever: It is difficult to answer this without further evaluation - we would be happy to see your child - if in doubt, please obtain a second opinion. You can receive a second opinion from Cleveland Clinic through our MyConsult program. For more information, please visit:
retiredtechie: Myectomy surgery is not offered in my area Cardiologists are recommending the Cleveland Clinic. Are there advances and any comparisons a patient can use to decide?
Dr__Harry_Lever: The nurses in the Heart Resource Center would be happy to discuss our outcomes data with you - please call them toll free at 866-289-6911.
LindaS: Dr. Lever with that post myectomy evaluation should it include an ECHO or is just an office visit?
Dr__Harry_Lever: You would need an echocardiogram.
jpow717: will a myectomy relive pressure on the heart?
Dr__Harry_Lever: It relieves the outflow tract pressure gradient.
jpow717: Will a myectomy relieve pressure from the heart for someone who has no symptoms?
Dr__Harry_Lever: We usually do not do surgery on patients without symptoms.
jvaldez: Is there a chance of regrowth after a septal myectomy?
Dr__Harry_Lever: Usually not unless this is done in a young child before puberty.
peach502: Would you recommend a myectomy to a patient who has had a ASA, is pacemaker dependent, but still has a septal gradient of 30 and ongoing chest pains? ( 59 and otherwise healthy - no other cardiac artery disease.)
Dr__Harry_Lever: Usually not unless there is a provocable gradient of more than 30, but you would require further evaluation by a HCM specialist.
shirleym: how low does the ef have to be to go on the transplant list?
Dr__Harry_Lever: There are multiple factors that need to be considered and not just the ejection fraction.
shirleym: what is the protocol for going on the transplant list
Dr__Harry_Lever: Please call the Heart Resource Center - the nurses will be happy to speak with you 866-289-6911.
Other Questions about Hypertrophic Cardiomyopathy
witter123: What does biatrial myopathy mean - I cannot have a third ablation because of that scarring situation.
Dr__Harry_Lever: This is probably a form of cardiomyopathy that effects both of the upper chambers of the heart.
Sissy: Is there any more of an increased risk for a patient with HCM and untreated sleep apnea vs. a pt. without HCM and untreated sleep apnea?
Dr__Harry_Lever: The combination of HCM and sleep apnea is potentially dangerous and the sleep apnea needs to be evaluated and treated.
sandy3135: is it even more imperative to use a CPAP machine for sleep apnea if one has HCM also?
Dr__Harry_Lever: Yes, it is.
JK: Can HCM be reversed through diet and exercise
Dr__Harry_Lever: No, it cannot.
wjs360: I was informed my LV has started to "remodel" Is there any way to slow down the process? Thank you
Dr__Harry_Lever: Possibly with adjustment of your medication.
heart08: is there increased pooling in HCM patients, thereby increasing clot formation
Dr__Harry_Lever: Only if there is impaired ventricular function and/or atrial fibrillation.
jackieo54: I have HCM and had a myectomy 2 year ago at CC. last winter I broke my leg and needed surgery. the surgeon needed to get an OK from my cardiologist because of HCM before doing the surgery. Is this normal? Is it a safeguard? should I expect this whenever I need a procedure done (I hope to never break my leg again but stuff does happen) ?
Dr__Harry_Lever: Clearance by a cardiologist is not uncommon in patients with HCM.
RGam: What is it that produces "sudden death" in a HCM patient?
Dr__Harry_Lever: what produces sudden death is felt to be a cardiac arrhythmia called ventricular tachycardia.
RGam: Is the possibility of ventricular tachycardia always associated with HOCM? Thank you.
Dr__Harry_Lever: No, not always.
Sissy: How long does VT have to last before it is considered dangerous? Does it matter what the ICD is set to?
Dr__Harry_Lever: We get concerned when it is above 5 or 6 beats; we usually set the ICD to fire when a dangerous rate is sensed.
Cleveland_Clinic_Host: We are getting ready to close for today. A large number of questions were received and we apologize if we did not get to your question. We will try to answer as many questions as possible in these last few minutes. If you have additional questions, please go to http://my.clevelandclinic.org/heart/chat_with_a_heart_nurse.aspx to chat online with a heart and vascular nurse
jvaldez: Thank you so much for hosting this live chat! This has been so helpful and informative!
Dr__Harry_Lever: Thank you!
haresundog: Not a question, but a hearty thanks to your recommendation for a myectomy and mitral valve repair from Dr. Smedira. I know you are very busy and appreciate this chat to HCM. I look forward to seeing you Sept 28th for my one year follow-up.
Dr__Harry_Lever: Thank you!
Cleveland_Clinic_Host: I'm sorry to say that our time is now over. Thank you again for taking the time to answer our questions about hypertrophic cardiomyopathy.
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