Questions

[Mark]

I am currently 48 years old. I was diagnosted with HCM at age 40. There are six siblings in my family, 3 of us have HCM. It was recently recommended that I have a diffibrilator implanted. Family history is the primary factor for the recommendation. However, after talking with my two brothers, I am the only one that has received this recommendation. My first question is, considering the family history, why would I be the one to have received the recommended implant. Secondly, I am concerned about the procedure. I am interested in hearing about the surgery, the recovery time and the impact this device has on one's lifestyle. I am a high school teacher and also finishing a masters degree program which I am finding to be quite demanding. The timing for such an implant is not good at this time, however, I know where my priorties are----my family. I am very interested in learning how others dealt with this decision as well as the procedure and aftermath.
Thanks you so much.

Mark

[Toogoofy317]

Re: Questions

Mark,

As far as risk factors go there are actually six of them with family history being one. The others are 1. Sudden cardiac arrest. 2. Ventricular tachycardia on a 24 hour holter. 3. Flat or drop in blood pressure during exercise. 4. Septum of 3.0 cm or more. 5. History of pre-syncope or syncope.

Some docs require more than one risk factors others may put one in with on factor depends on which factors you have.

As far as your brothers getting different advice. Are you seeing an HCM specialist? Seeing one will do you worlds of good and take some of the guess work out of it all.

As far as getting the defibrillator implanted it is not a major operation. You may be out of work for a week max. The only restriction really is no lifting your arm above your head for about six weeks. This ensures the leads completly anchor onto the heart. After my implant I was back doing my EMT clinicals the next week.

Hope this helps!

Mary S.

[Sarah]

Re: Questions

Dear Mark,

Welcome! The search function will help you find a ton of posts on ICDs in this message board.

Are your brother's seeing HCM specialists and what risk factors do you have?

S

[Cynaburst]

Re: Questions

I have had an ICD for 1 1/2 years. The impact on my lifestyle has only been positive -- now I don't worry about dropping dead all of the time, and I expect I will see my 2 1/2 year old son grow up. I don't worry about what is about to happen every time I feel my heart feel a little funny.

Otherwise, I carry on as normal. I work, I raise my son, I go to the grocery store, I go to the gym, I do everything I did before I had the implant, but with more assurance that I am protected from any potential disasters.

The surgery is no big deal and the recovery is only a problem in that you can't raise your arm over the shoulder for a few weeks. Also, you will have to have the unit replaced every 7 or so years in an outpatient procedure.

If you are uncertain whether you need this, seek a 2nd opinion from a HCM specialist and see what they say. Lisa Salberg, president of the HCMA can help you find one. Call her at the number on this webpage and see what she says. She can provide invaluable info.

Good luck.

[shirleymahoney]

Re: Questions

Mark

I have a question for you are all of you seeing the same doctor if not then maybe you are seeing a doctor that is up on the disease where your brothers doctors are not, i got mine because of sudden death in the family and my son is getting one too, i really don't know mine is there anymore in fact when i go to the doctor now i forget that they are going to check it because i don't feel it there anymore, and i can also tell you about why you need one my neice never recieved one and she is not with us now but her daughter has one and she is still here it saved her life, if you have any of the requirements go for it what do you have to loose!!!!!!

Shirley

[Mark]

Re: Questions



Thank you all very much for your timely and gracious responses. My brothers and I live in differnet areas and do not see the same doctor. I have consulted with four cardiologists, I don't recall any being identified as HCM specialists. I live near Madison, Wisconsin. I will inquire about specialists in this area. Thanks again.

Mark

[felixdacat]

Re: Questions

Hi Mark,

I believe that most people on this board would recommend that you get evaluated at an HCM Clinic if...
1- Your symptoms have started to make a large negative impact on your lifestyle.
2- Your present doctors begin to indicate the need of some procedure.

There are 3 major HCM Clinics. The one closest to you would be at The Mayo Clinic in Rochester, MN. The other 2 are New England Medical in Boston and the Cleveland Clinic in Ohio.
All 3 centers can assist your cardiologist or your primary care physician if a referal is needed.

Although most cardiologists are aware of HCM, they do not have the expertise that we require. I have doubts that you will find a sepcialist in Madison, or Wisconsin, or the midwest (with the exception of the Mayo).

As for the ICD they want to implant, this subject was brought up at the annual HCM meeting back in June. If you happen to be a candidate for an ICD then this procedure is well worth the time and discomfort. However, if you are not a candidate, it is not worth the risks. Unfortuately, many non-candidates are pushed to get an ICD by well meaning cardiologists.
How do you know if your a candidate? Well there are the risk factors, but the best bet is to go to an HCM clinic.
Please tell your brothers about this website. Since you are 48, there is a possibility that you have children. They and your neices and nephews have a 50/50 chance at getting this condition as well. They should be evaluated as well, especially if anyone is planning to partake in athletics.

[Mark]

Re: Questions


Felixdacat,

Thank you for a very informative response with very sound advice. It appears that a trip to Mayo is in my best interest.

Mark

[Cynaburst]

Re: Questions

Mark - The Minneapolis Heart Institute is also near you and Dr. Barry Maron who is probably the world's foremost authority on HCM is there. You could try him also.

[Mark]

Re: Questions

Thanks for the tip. This site and this forum is incredible. What an excellent source of support and information.

Mark