Tuesday, February 16, 2010, 12:00 p.m. — 1:00 p.m. (EST)
Harry Lever, MD
Medical Director, Hypertrophic Cardiomyopathy Clinic, Robert and Suzanne Tomsich Department of Cardiovascular Medicine
Hypertrophic cardiomyopathy (HCM) is a complex type of heart disease marked by thickening of the heart muscle, left ventricular stiffness, mitral valve changes and cellular changes. HCM affects an estimated 600,000 to 1.5 million Americans, or one in 500 people. HCM is the most common cause of sudden cardiac death in people under age 30 and may be best known for its role in cardiac arrest and subsequent death in some young professional athletes. Dr. Lever, a Cleveland Clinic cardiologist and renowned expert on HCM provides answers to your questions about HCM.
Cleveland_Clinic_Host: Welcome to our Online Health Chat with Dr. Harry Lever and sorry for the delay. We are thrilled to have him here today. Thank you for joining us Dr. Lever, let’s begin with the questions.
Speaker_-_Dr__Harry_Lever: Thanks for having me today.
Hypertrophic Cardiomyopathy, Children and Testing
HelenL: CCF patient, Mom, and Grandma wonders when is the appropriate time to have children/grandchildren tested for HCM/Dilated Cardiomyopathy when this condition runs widely through the family? Also, when should a follow-up be done. And, if I may, how can siblings of patient get tested/followed by same doctor(s)? Thank you for helping and understanding!
Speaker_-_Dr__Harry_Lever: It would be appropriate to have a gene test for the index case (first person) and then if the gene is found the children could be tested. Then we wouldn't have to do repetitive echos over the years.
BenR: I'm a 40 year old man with HCM. No siblings or parents have the disease. Murmur/thickened septum, but no major symptoms. My 5 son year old has been seen by a cardiologist and tested with an EKG and echo. We were told he is perfectly fine and to have him checked again in 5 years. However, about once every 3 or 4 months he complains of his "heart beating fast". All doctors have told us this could be caused by many things and not to worry. Should I be concerned? What do you recommend as testing for people with HCM and young children? (I know that the recommendations change when kids enter puberty.)
Speaker_-_Dr__Harry_Lever: The father should have a gene test and the son as well - The son should also be seen by a pediatric cardiologist for complaints of rapid heart beat.
ClarenceM: Hello Dr. Lever! We are currently in Houston, TX and are being seen by the Texas Children's Hospital cardiomyopathy clinic, however, I have a question regarding ICD placement in children. My 11-year old (170lbs, 16mm septum) and 6-year old (53lbs, 26mm septum) both have HCM. I have lost two sisters and a mother to HCM and have an ICD placed myself (as I'm in end-stage). When is it appropriate to consider ICD placement for my children? Texas Children's does not place for "preventive" care, so is it appropriate to consider another facility?
Speaker_-_Dr__Harry_Lever: We need additional information - if you want to call me offline you can do this. But related to the 6 year old - we need to know if there is outflow tract obstruction and if there is scar on MRI scan. If there is significant outflow tract obstruction I would consider a septal myectomy and if significant scar would consider an ICD. I would be more than happy to discuss this with you. I am less concerned with the 11 year old at this time - but still needs very careful follow up.
judyldavis71_2: my son is 15 and has hcm and occasionally he has his heart racing for several mins. he has had a heart monitor several times during his checkups. nothing shows. I cant tell if it anxiety or his heart. what do you suggest?
Speaker_-_Dr__Harry_Lever: He should wear an event monitor - he can wear it for 30 days. When he has the symptoms they can document his rhythm. If he continues to have symptoms he should see a HCM specialist.
ClarenceM: If two people in my family, my sister (now deceased) and myself (age 32) progressed to end-stage HCM, does this mean my two children are looking at the same outcome, or can it the progression be slowed?
Speaker_-_Dr__Harry_Lever: Not necessarily - they need careful follow up.
talbot: Where can you get the gene testing done for HCM?
Speaker_-_Dr__Harry_Lever: There are a number of commercial labs - you should speak to your HCM doctor about where they would prefer. You can call the HCMA or call us if you need help. Website for HCMA - http://www.4hcm.org/
Jan1948: I have HCM. My 29 year old son has never been tested. Should he have an echo or a gene test?
Speaker_-_Dr__Harry_Lever: You have to have the gene test first - if yours is positive then he should have it. If there is no positive gene - then your son needs an echo for sure.
judyld71_2: my son is 15 and has hcm, the thickening is moderate, and no one in our family has this. Although his great grandfather died of a massive heart attack at thirty five. the death cert. states it was coronary heart disease. Do you think it is possible that the thickness could stay the same> he is on 40mg. of nadolol. He has had genetic testing and it was neg.
Speaker_-_Dr__Harry_Lever: It could stay the same but he needs to be followed by a cardiologist who specializes in HCM. No weight lifting for him and no competitive sports.
ClarenceM: Is it appropriate to carry an AED for a family with two children diagnosed with HCM or is this overkill?
Speaker_-_Dr__Harry_Lever: I would not say it is overkill given your family history.
Hypertrophic Cardiomyopathy – Surgical Treatment, Myectomy
RobertS: After open heart surgery to treat HCM, what is the probability that septum thickening will re-occur? What can be done to minimize that occurrence?
Speaker_-_Dr__Harry_Lever: The chances of recurrence are not great at all and we recommend good control of BP and avoiding weight training.
Jimmy: DR Lever: I was a HCM patient of yours in Jan 2007.Surgery was performed at Cleveland Clinic in March of 2007. I still have a heart murmur that my local cardiologist detects, should I have any concerns or just continue to see him every 6 months. Thank you and your staff you truly are a life saver. Thanks Jimmy
Speaker_-_Dr__Harry_Lever: Many people still have a heart murmur after heart surgery for HCM and it often does not mean anything - but you need follow up echos with your cardiologist.
Robarooney: I had a myectomy (Dr. Smedira) on November 4, 2008. In my opinion, the operation was a complete success and I feel so much better. Recently, I found out that one of my previous cardiologists is opposed to the myectomy and would not recommend it for any of his patients. Please discuss reasons why and how I might talk to him.
Speaker_-_Dr__Harry_Lever: Cardiologists who deal with a large number of HCM patients have found septal myectomy to be the gold standard for treatment of obstruction associated with HCM.
GeraldW: I am 63 years old and had Septal Myectomy two years ago. Following the procedure I have been experiencing short term memory loss. Is it possible that this procedure may be a contributing factor to memory loss?
Speaker_-_Dr__Harry_Lever: It is possible that that can happen but you should be seen by a neurologist and be evaluated. While it is possible, the incidence is not high.
ShellyR: My question has to do with the progression of HCM after you have had a septal myectomy. I am still unclear about the label or description of heart failure. I have had steady weight gain in the abdomen that I had thought was fluid retention and have added new drugs to help fight this problem and it seems to have helped me loose 10 plus pounds as long as I take them. Why is there so much fluid build up from the hearts inability to pump properly?
Speaker_-_Dr__Harry_Lever: You need to be evaluated to see what is going on by a HOCM specialist. Not all patients experience what you are describing.
shirleym: I have HCM I've had a myectomy and now I'm told I have a High red blood cell count, Is this be due to me being in stage 3,4, HF
Speaker_-_Dr__Harry_Lever: No - that needs to be evaluated by a hematologist - this may be a hematology issue separate from your HCM problem.
Patrick: Do post-myectomy HCM patients need antibiotics before dental visits?
gerry911: Is depression common after a septal myectomy?
Speaker_-_Dr__Harry_Lever: This can happen after any heart surgery and needs to be evaluated and treated by a psychiatrist.
Hypertrophic Cardiomyopathy: Signs and Symptoms
EricA: They tell me I have "classic HCM" but tests show that I am not in danger of sudden death. I am a 74 year old male. I get short of breath with exercise. However, chest discomfort (angina?) occurs not with exercise but if I am sedentary and then get up and get the mail, etc. So long as I start slowly (warm up) I am fine. I need exercise guidelines, but doctors are vague. I usually go on a treadmill and warm up gradually, increasing speed or incline until I just begin to feel pressure/discomfort in my chest. Then I continue at this level and cool down slowly after a half hour. IS THIS APPROACH REASONABLE? Is there somewhere I can get further guidelines?
Speaker_-_Dr__Harry_Lever: This needs further evaluation with an echo and possibly a coronary angiogram to rule out coronary disease.
Shirley: I have HCM, I'm 52 and I also have problems with my oxygen Sats, I have just finished Cardiac Rehab and I don't feel any better then I did when I started, Should I head to a specialist now or is this something I have to just deal with? I live in Virginia
Speaker_-_Dr__Harry_Lever: I would strongly recommend you see a HCM specialist - there are listings of HCM physicians on the HCMA website.
ChristineB: My question is for pertaining to the online chat on 2/16/10 on HCM. I was told I have Left Ventricular Hypertrophy. I had a 24 hour BP monitor done and was found that I DO NOT have high BP. I then went back to my cardiologist thinking we would go over other things---however was told to exercise 30 minutes per day, eat more healthy and lost some weight. My question is I get chest pain, short of breath when I start to even walk on treadmill. I have had 2 cardiac caths done and no blockages. I read the LVH could be causing these symptoms. If it is not caused by high BP then what? Also can LVH be a 1st sign of HCM?
Speaker_-_Dr__Harry_Lever: You need to be seen with thorough echo, stress echo and MRI because you are having symptoms.
Yes - LVH can be a sign of HCM.
chuzzlewit: I recently underwent prosthetic mitral valve replacement along with having a simplified maze procedure performed due to my obstructive HOCM and accompanying chronic a-fib; I had been scheduled for a septal myectomy and maze procedure but due to my extreme degree of pulmonary hypertension per the pre-op catheterization, the surgeon opted to forego the myectomy. I am quite concerned about this as I still continue to have prolonged episodes of a-fib--I am amiodarone intolerant and currently take a combination of tikosyn, dilitiazem & atenolol for the arrhythmia. My last echo on 1-25-10 showed enlarged left atrium with the following measurements: LA Diam: 6.1cm---LA area: 39cm---MITRAL 1.8 m/s peak vel---12 mmHg peak grad---6 mmHg mean grad. Based upon the foregoing, do you feel that a septal ablation/myectomy may still be in order?
Speaker_-_Dr__Harry_Lever: You need an echo and further evaluation. We would be happy to see you here.
DebbieC: Are there people who have HOCM but never go on to develop symptoms? Does HOCM always progress and get worse or can the growth in the heart stop. I have been diagnosed for the past 15 years but do not believe I have any symptoms.
Speaker_-_Dr__Harry_Lever: Yes - HOCM may not cause symptoms.
Symptoms do not have to progress. The HOCM may not get worse. I would suggest periodic echo and possible stress echo to evaluate ongoing
Duncan1: Hello Dr. Lever, I have heard that LVH can also be caused by high blood pressure. Does LVH caused by high blood pressure present itself differently than HCM on an echocardiogram? Thank you for taking the time to chat with us.
Speaker_-_Dr__Harry_Lever: The LVH associated with HTN is usually less than that associated with hypertrophic cardiomyopathy.
las33469: Can a myectomy alone result in diastolic dysfunction?
Speaker_-_Dr__Harry_Lever: Usually not - it usually improves diastolic function.
hawaii50: I had HCM diagnosed after a cardiac catheterization (end diastolic of 18mm and EF of 85% - also diagnosed two partially blocked arteries I had a stress echo that did not show HCM or gradient/obstruction issues. I have been told by cardiologist that I need checked every six months but still suffer greatly from fatigue and occasional chest pressure. Is it normal for the stress echo not to show what the cardiac cath saw? Should I seek further investigation with a HCM specialist? I live in Hawaii and there are no HCM specialists here.
Speaker_-_Dr__Harry_Lever: Yes - you need to be seen by someone. You may need to travel for a specialist. We are happy to see you here - we can assist you with travel - or you can go to the HCMA website to search for a specialist.
jall49: Is there any connection between HCM and migraines? I have chatted with a number of people who seem to have both conditions?
Speaker_-_Dr__Harry_Lever: It is not known but I have also seen a number of patients with migraine and HCM.
Hypertrophic Cardiomyopathy and Medications
Sherry: My son was just diagnosed with HCM. His dr has put him on verapamil and bystolic 5mg is there a better medicine he could take or is there something else we could do because he gets so short of breath.
Speaker_-_Dr__Harry_Lever: He needs to be further evaluated with an echo and a stress echo and possibly an MRI - not enough information.
drhanaa: is there a new drug treatment for this disease? what is the appropriate management of a47 year old male hypertensive ,has diabetes type 2 , cardiomegaly and fatty liver ,takes concor 5 plus ,norvasc and glimepride?is there a safe surgical procedure for cardiomegaly?
Speaker_-_Dr__Harry_Lever: You need further evaluation to determine the best medical regimen for you. There is no surgical procedure for cardiomegaly.
RosemaryB: I have HCM and don't know what kind of pain medication is the best to take or not to take. Also, is it safe to take Ambiem or other sleep help drugs? My doctor just tells me, "If it helps, than take it." Just doesn't sound right if you have a heart problem like HCM. I am also allergic to Coreg and related drugs. I had a heart attack last year and also was diagnosed as having "Broken Heart Syndrome", which has since healed. I am only on Diovan and aspirin at the present time. I'm doing ok, but sometimes have a breathing problem if I overdo. Is there anything that I can take for the problem that won't affect the stomach ulcer I've developed too?
Speaker_-_Dr__Harry_Lever: You need to be seen. There are too many issues to just provide you with a simple answer. Would need to review your records and evaluate you.
rosebru30: Since I am allergic to Coreg and related drugs, is there anything else for a HCM patient to take? I am presently on Diovan and aspirin.
Speaker_-_Dr__Harry_Lever: You need to be seen and looked at - this is too complicated a question. There are no specific medication regimens for patients. Each patient is treated individually.
Hypertrophic Cardiomyopathy and Arrhythmias
JeffA: Dr. Lever, can you comment on superventricular tachycardia (SVT) in the HCM population. Specifically, are SVTs still considered relatively benign events for a person who has hocm? Is it true that SVTs are not a precursor to anything that could lead to scd? And is distinguishing a svt from a ventricular tachycardia on a monitor strip a relatively black and white determination that any board certified cardiologist ought to be able to make?
Speaker_-_Dr__Harry_Lever: We need more information about the SVT - how frequent and how fast and more information about the anatomy. If you were to come to the Cleveland Clinic for an evaluation - I would suggest you make an appointment with a HCM specialist and we would possibly also have you see an electrophysiologist for your SVT.
Jan1948: I have obstructive HCM, diagnosed 3 years ago, and last year I was hospitalized for a week with Atrial Fibrillation.
Speaker_-_Dr__Harry_Lever: Atrial fibrillation can be common with HCM. If there is obstruction and atrial fibrillation, I may consider myectomy - but this needs further evaluation.
ryanding: I am a 20 year old who has anxiety. I have heart flutters that last ~15 seconds about two or three times a month. These scare me and create even more anxiety. When I was 15 I had an attack where I bent over to get a baseball and my heart started beating really fast even when sitting for around 6 minutes. I had an ekg and blood work done and was cleared. I do however; have anxiety about there being something wrong with my heart. I have had a few flutters even when not anxious and whenever I have a flutter it builds the anxiety about there being something wrong. It is very cyclic and has created bad anxiety. Should I make an appointment with a cardiologist? I feel the only way I'll feel validated that I am fine is if I get fully tested.
Speaker_-_Dr__Harry_Lever: Yes - you should see a cardiologist. You should wear an event recorder that is patient activated so that when you have this type of episode we can make a diagnosis of what you have.
SheilaC: My husband had a septal myectomy on February 1st at Cleveland Clinic. He is now in AFIB - is this common after this type of surgery?
Speaker_-_Dr__Harry_Lever: It can happen - if you are at home - you need to contact your doctor who treated you here.
Deedee: If my only risk factor is a couple of 5 second v-tachs on a holter is an ICD really indicated? My surgery is 2 weeks away and I'm still having a hard time believing it's necessary
Speaker_-_Dr__Harry_Lever: ICDs are indicated for nonsustained VT, excessive thickening of the septum greater than 30 mm, or syncope.
Bobuddy: You just answered my question about AFIB after a myectomy on February 1st. We have been to our cardiologist here where we live and they want to do a TEE and then shock his heart. Is this appropriate after just having surgery on his heart?
Speaker_-_Dr__Harry_Lever: Yes - cardioversion is a common treatment for atrial fibrillation - but we recommend a TEE before the cardioversion.
dennice: I had a septal myectomy at cleveland clinic. My daughter has not had gene testing but her pediatric cardiologist has cleared her of any signs of HCM. She is 19 and just joined a gym. I assume she is doing some sort of weight training. Is this ok
Speaker_-_Dr__Harry_Lever: You need to do a gene test first. And if positive - she should have a gene test. If you are negative, she should have continued follow up with her cardiologist with echos.
dennice: I have an ICD and had a septal myectomy on the upper chamber of my heart. Dr. Lytle did tell me that the lower chamber could not be reached. Has there been any advances for surgery on the lower chamber?
Speaker_-_Dr__Harry_Lever: If you want to contact your doctor here - we would be happy to help answer your question - I am not sure what you are asking.
Hypertrophic Cardiomyopathy and Exercise
rojersey: My husband has hcm and has had positive genetic testing. Many of our asymptomatic children and grandchildren have also had positive genetic test results but are clinically free of symptoms and have regular echocardiographs. May they continue to do vigorous exercise?
Speaker_-_Dr__Harry_Lever: They need to be followed with serial echos. They should not do weight lifting or competitive sports because we do not know what turns on the gene that creates hypertrophy in patients that are positive for the gene of HCM.
There is a multicenter NIH trial looking at gene positive - echo negative patients. We will be participating in this.
jfr15743: Hi Dr. Lever. I am one of your HOCM PTs and had Septal Myectomy in Oct 2006. I work out at YMCA and do some weight training to keep toned. Nothing extreme. You said earlier "no wt training". Should I stop? I only do certain leg, bicep and chest press routines on a Universal. Is it ok?
Speaker_-_Dr__Harry_Lever: Nothing more than 10 - 15 pounds for toning - but not bulking.
jagreenberg: With the recent deaths of two elite athletes, Gaines Adams and Jeron Lewis, what are your thoughts on screening young athletes for HCM (mandatory?)
Speaker_-_Dr__Harry_Lever: At this time, there are differing opinions.
Sissy: If a pt. has the gene for HCM and not the disease, can the pt. still do some weight training?
Speaker_-_Dr__Harry_Lever: I would not recommend it.
Someone asked about weight training after myectomy – why not?
There is theoretical risk that the muscle could thicken with excessive weight training.
Other Questions about Hypertrophic Cardiomyopathy
DebbieC: Is there any research going on currently that looks at possible drugs which will reduce the thickness of the septum or cause the growth to stop?
Speaker_-_Dr__Harry_Lever: No - there are no studies at this time.
DebbieC: Are there any statistics that address average life expectancy with HOCM?
Speaker_-_Dr__Harry_Lever: no. not at this time
talbot: Is there any research currently being done to cure HCM?
Speaker_-_Dr__Harry_Lever: No - unfortunately not at this time.
JulieG: 1. Why is there no national registry for HCM? 2. Are certain ethnicities at risk more than others? If so, where is stats on this?
Speaker_-_Dr__Harry_Lever: No one has ever funded a national registry. However please go to HCMA for more information about HCM - http://www.4hcm.org/
MissyB: I have HCM, 38 and otherwise healthy female. I would like to know if I could undergo taking testosterone treatments in my gender transitioning. I have not spoken yet to my cardiologist.
Speaker_-_Dr__Harry_Lever: You should speak to your doctor about your concerns.
jfr15743: Is it a good idea to take fish oil supplements?
Speaker_-_Dr__Harry_Lever: No proof it does anything for HCM
ClarenceM: Has CoQ10 been shown to help children with hypertrophic cardiomyopathy?
talbot: Do you recommend daily vitamins for HCM patients?
Speaker_-_Dr__Harry_Lever: Not for HCM.
shirleym: why no vitamins?
Speaker_-_Dr__Harry_Lever: Vitamins for most people - if you are on a balanced diet - are not necessary. Vitamins have not been proven beneficial in HCM.
jagreenberg: Are certain ethnicities more likely to have HCM?
Speaker_-_Dr__Harry_Lever: So far there is no correlation with ethnicity.
las33469: I would like to make an appt with you. Do I call the main appt line or your secretary? I am followed in the Weston location.
Speaker_-_Dr__Harry_Lever: Please call appointments - 800-223-2273, extension 46697.
talbot: What is the normal life span of someone with HCM?
Speaker_-_Dr__Harry_Lever: It can be normal. Each patient is unique.
Janerww: How do you differentiate HCM from dilated CM?
Speaker_-_Dr__Harry_Lever: With HCM usually the left ventricle is not dilated and the walls are thick and in a dilated CM, the left ventricle is dilated and the walls are thin.
rar1013: Just wanted to say hello. I was your patient from ca. 1982 (septal myoectomy) for HCM followed in 2004 with a heart transplant at the Cleveland Clinic. I am doing very well. Dick R.
Speaker_-_Dr__Harry_Lever: I am glad you are doing well.
shirleym: Dr. Lever I would like to thank you for being there for HCM patients all over the world
Speaker_-_Dr__Harry_Lever: Thank you.
talbot: Thank you Dr. Lever
Speaker_-_Dr__Harry_Lever: You are welcome.
I hope you will join us at our HCM conference for patients on April 30th - information will be available through our website and HCMA - or you can contact us for more information.
Cleveland_Clinic_Host: I'm sorry to say that our time with Dr. Harry Lever is now over. Thank you again Dr. Lever for taking the time to answer our questions about HCM.
Speaker_-_Dr__Harry_Lever: Thanks for having me today.
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