Hypertrophic Obsructive Cardiomyopathy – “HOCM”.

I have been diagnosed with Hypertrophic Obstructive Cardiomyopathy – “HOCM”.  
I am seeking additional information regarding others' experiences, treatments, and results.
thank you

[kevk]

I was dx in 1985 with HOCM  mid wall obstruction. It took me a long time to find meds that worked. Everyone`s heart is a little different some people can live a long normal life with no med`s and others may have electrical problems or heart failure.
You can email me anytime if you would like to talk about it.

[jdm66]

hi kevk
Thanks for the reply.  My septum is enlarged which causes an obstruction, interfering with the mitral valve.  The symptoms occur only within an hour after eating and mild exercise - walking, stairs, etc.  This is the time that my stomach and muscles are requiring more blood.
We’ve tried the beta blocker meds.  They don't seem to be working.  What was your treatment and the results?
thanks again
Jim

[kevk]

Hi Jim
Right now I take 150 mg metropolol a day with 300 mg of Flecainide a day. I had my first AICD/Pacemaker implanted in 1991 for v-tach and v-fib. My treatment now is to try to maintain sinus rythm and treat heart failure symptoms.
It`s working OK for me but I had to make a lot of life style changes.  I try to get as much exercise as possible.

[grendslori]

While my daughter suffered from Bi-Ventricular CHCM, hers was not obstuctive. They used calcium channel blockers which helped a bit with her symptoms. Have you been seen by a good HCM center? (Cleveland Clinic, Mayo Clinic?) You really need to see a specialist that understands exactly how to treat this form of heart disease. Some people can live fairly normal lives, some do not and require transplantation (about 5%). Family members have to have echoes to make sure this is not genetic in their family, most times it is genetic in nature.

[kenkeith]

Q: My septum is enlarged which causes an obstruction, interfering with the mitral valve.  The symptoms occur only within an hour after eating and mild exercise - walking, stairs, etc.  This is the time that my stomach and muscles are requiring more blood.

>>>>Is the obstruction causing regurgitation (back flow of blood) MV, or stenosis (narrowing the opening).  Obviously, there is a reduction of cardiac output, and the heart does not meet the demand for oxygenated blood.  I'm just curious. I have severe MV regurgitation, and I don't have shortness of breath to the degree that you indicate!  Or are you having chest pains? ...I don't have a problem with a nitrate med.  

[grendslori]

ken, the symptoms he describes are very accurate for any patient with HCM, obstructed or not and also nitrates cause a major drop in BP so they generally aren't given for chest pain. The SOB is very common and most all patients, again with obstruction or not, have major SOB. More than likely he would also have regurge.  

[kenkeith]

OK.  I see, then the low cardiac output, if there is low CO does not cause ischemia or if it does it is not associated with the coronary vessels and medication to relax vessels has no effect. Yes, it makes sense that nitro decreases blood pressure and that may be contraindicated for HCM!.  

Do you know the etiology for the shortness of breath as it relates to HCM?...I guess that is where I am at in my thinking, and that is why I assumed there was low cardiac output and significant regurgitation. Or HCM can cause stenosis, I assume, and that condition would be associated with left ventricle filling time and capacity and reduce CO as well. Does HCM reduce the heart's ability to adequately pump (systole)? Also, there would be an increased size of the left atrium if there is mitral valve stenosis?

I appreciate your comments.  Thanks.

[grendslori]

Hi Ken, I'll try and answer your questions. The ischemia that is caused in HCM is actually caused because of the breakdown of the blood vessels. The coronary arteries may be 100% open, but as the heart is fed the blood supply from the OUTSIDE of the heart wall DOWN THROUGH the muscle; in the normal heart where the wall is 1 cm thick, getting blood to the muscle isn't a problem. In the HCM heart, if the walls are more than 1 cm (which is the normal size for a man) then the blood supply never reaches the full thickness of the muscle. The HCM patient has heart attacks throughout the inner side of the muscle causing scar tissue to develop which only aggrivates the problem. Add that to the fact that the HCM muscle fibers are already in array, this causes the walls to become stiff and therefore cannot relax and fill properly, hence the bloodflow to the rest of the body is not normal. That ends up with a chain reaction where the lungs are concerned and therefore there is SOB that all of these patients experience. As the walls thicken there can be stenosis as a result either to the valves or to the chambers themselves depending on where the thickness occurs. if it is either in the septum or on the outer walls of the muscle, then there can be obstructions to the valves. If the patient has a concentric form of HCM, which is rarer, then the chambers themselves can decrease in area which really makes things bad. Blood backflows up into the atrium which ends up causing the atrium chamber to increase in diameter.. HCM definitely reduces the heart's ability to adequately pump; it is not during the systole period however until the late, or 'burn out', phase of the disease. It has more to do with relaxing and filling so that the chambers can allow the proper amount of blood to enter them. The problem is that with thickened walls, the amount of blood being filled is not the correct amount, hence the correct amount never really makes it out to the body. Patients with HCM have issues with dizziness and lightheadedness, presyncopy and syncopy as a result. The thickened walls become irritated because of the lack of blood supply so arrhythmias are common as well as electrical pathway issues. Patients with HCM are in diastolic heart failure as opposed to systolic heart failure although in the terminal (not for all patients) stage of HCM, the walls begin to thin out and eventually the patient ends up in systolic heart failure. I hope this answers some of your questions. take care

[kenkeith]

Thanks for the information.  We will have to use your explanation as the "go to" post for HCM :) Take care

[grendslori]

I hope it helped, Ken. I had books on the cardiomyopathies and studied about them for the better part of 25  years, then lost all the books in a house fire! That was a bummer!

[jdm66]

hi grendslori
Thanks for the reply and info
I am trying to gather as much info as possible in the next two weeks so that I can better understand and converse better with my cardiologist then.  My last cauterization showed that my arteries are clear - thanks to a single bypass and stents, but discovered HOCM.  My septum is enlarged to the left where it interferes/obstructs the mitral valve.

I am seeking others' experiences, treatments, and results for similar cases.
thanks again
Jim

[jdm66]

hi kvek
I just sent a reply to grendslori. Since I'm new at the protocols here, I hope you get copied on it.  if not, please reply.
thanks
Jim

[jdm66]

hi kenkeith
I just sent a reply to grendslori. Since I'm new at the protocols here, I hope you get copied on it.  if not, please reply.
thanks
Jim

[grendslori]

I just revisited your post and wanted to know if there was anything else I could help you with? Two of the best HCM centers here in the US are the mayo Clinic and the Cleveland clinic. You may ask your doctor if he would write you a referral to either of those places. It helps to see a doctor who is very familiar with this disease as it is still somewhat rare. Many patients live pretty normal life spans, even with the disease; some need to have transplants. It just depends on the individual. If you are diagnosed as an adult, your prognosis is better because you have already gone through the growth years of puberty. HCM is not a diagnosis you want to have given to your child. You may want to ask your doctor about having an EP Study done to check the electrical system of your heart as arrhythmias can be an issue with this disease as well.

[jdm66]

thanks for the reply
We are considering Alcohol Septal Oblation (ablation).  What is your experience with this procedure?
Jim

[Micky0616]

My 23 year old son was dig. with HOCM on August 28, 2011. He is is currently on a beta-blocker, but states that at times his breathing is impaired and experiences pulling for air.  He has gone to several hospitals in the NJ/NY area and even to John Hopkins in Maryland.  

Malcolm has been an athletic all his life, never took meds for anything.  He was seaching the treatment Alcohol ablation, do you know anything about the treatment.

[grendslori]

Are you talking about a myectomy? Also, have they tried using Calcium Channel Blockers on your son? Usually those are the groups of drugs that are used for HCM patients.

[kevk]

This would be better answered by your doctor, Symptoms you describe can be caused by his obstruction and the meds. Grenslori is correct some people do better on a calcium channel blocker. It took doctors a long time to find out what worked best for me.
I have heard many good things about Ablations and Myectomy`s reducing symptoms. This is why it is important to see a doctor who specializes in HCM.  I personally could not have either one because of my history of SCA. I will send you a email with some more info to help you out.

[Mom2four85]

please visit the HCM association - google it and you'll find info - he needs a dr who understand and deals with Obstructive HCM; I've talked to 2 others who had the Alcohol Ablation done and it worked wonders but it's a newer process and not many dr's will do it - they go the old route with myecotomy because not all of us HOCM patients can have it done