[When to get an ICD?]

Author: Craig (---.dsl.sfldmi.ameritech.net)

Date: 05-29-02 16:20

Hello again,

I know everyone is quite busy with the conference, but I thought I would throw out the most pressing question in my life right now: should I get an ICD?

I've read several studies, and they give different recommendations for who and when. My septal thickness is 30mm (up from 25mm six months ago.) I have no symptoms or history which place me at high-risk, though I have had two documented "enzyme leaks" in the past year, but with no observable damage to my heart muscles through two different stress tests and echos.

Another question: is ventricula tachycardia a progressive symptom? ANd what is non-sustained VT? Just a few beats of it? Are there studies that show certain symptoms usually precede VT? Such as passing out, etc.?

I realize I will probably have to get an ICD at some point in my life, but when exactly? Dr. Lever is my doc from Cleveland, and he is recommending a 30-day event recorder to see if this gives us more information. (I've done one before, with not evidence of any arrythmias.)

Doubting this will give us more information, I am confused as to what to do.

By the way, I now read this website every day because of the wonderfully, smart, and caring people involved. I wish I could be at the conference this weekend, but my wife is on bedrest, pregnant with our baby boy (due August 12, 2002!). So, I need to be at home with her.

Good luck to everyone!!

Craig

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[Re: When to get an ICD?]

Author: sarah beckley -moderator (---.dsl.mindspring.com)

Date: 05-29-02 18:32

Dear Craig,

Dr. Lever is one of the best guys in the business --or so I'm told. How long ago was the last 30 event recorder? Is there some reason you don't want to do another one?

I don't know if vtach is progressive, but non-sustained just means sporadic, comes and goes. Passing out can _follow_ vt. VT tends to just happen without warning.

My personal feeling is that your doctor is an expert whose opinion is worthwhile and your decision needs to be based on the medical evidence on your personal potential risk for sudden death. I understand your frustation at the lack of hard and fast rules on ICD placement, but every one is different. The analysis has to be about your situation and yours alone. If you don't think Dr. Lever is right, than see Maron or Nishimura for a second opinion. or third. But no one can tell you over a message board if you should have an ICD; I wish we could.

This is not, perhaps, the answer you wanted, but I know there is a ton of info out there and it is hard to weed it all out. I recommend re-focusing on your exact risk profile and what your doctors are telling you about you and go from there.

best wishes,

sarah

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[Re: When to get an ICD?]

Author: Lisa Salberg (---.dyn.optonline.net)

Date: 05-29-02 19:32

Craig,

You have seen a wonderful doctor who fully understands your condition. While a septal measurement of 3.0 has been indicated as a risk factor on it's own some people prefer to have 2 risk factor prior to implant. Personally, I would trust Dr. Lever to lead you in your treatment, however should you want a second opinion I second Sarahs suggestions of Maron or Nishimura.

Living with an ICD is not bad at all, I have had one for 5+years and my life is very normal, infact most days I forget it is there...that is until I have some funky beats then I remember...It's OK my BOX will take care of me!

I agree with your statement those who participate in this message board are really something! Hey! see what you can do about giving me a birthday present...Have your child on the 9th of August... I would be thrilled!

Craig...if you need anything just call...but next week please...I am about to go nuts here this week!

All the Best!

Lisa

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[Re: When to get an ICD?]

Author: karen (---.dyn.optonline.net)

Date: 05-29-02 21:02

Hi Craig,

The 30 day event recorder is where my husband's non-sustained v tach was first documented. It's a wonderful tool! Are you feeling any fluttering, any odd beats? If you are, it's a great way to figure out what's going on.

The device looks like a beeper and hooks to your belt. It's usually connected by two wires on your chest. You hit a button when you feeling something strange and it records approx 30 seconds prior to hitting the button and 30-60 seconds after the button is hit. Then the transmission is sent via the phone to the holter company, then faxed to your doctor. It's a beautiful thing!

You are right, you need to be home this weekend. We'll take good notes! Take care Craig.

Karen

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[Re: When to get an ICD?]

Author: Patricia wonderly (---.56.28.89.Dial1.Buffalo1.Level3.net)

Date: 05-30-02 11:41

Hi Craig:

I am 39 and have had an ICD for 2 years. Like Lisa said, you don't even know it is there most of the time. I did not have much of a choice in regards to getting and ICD. But, I will tell you, I would be afraid to live without one, now that I have one implanted. It gives me alot of security.

I also see Dr. Lever in Cleveland. I would take his advice and wear the holter moniter for 30 days and then make your decision. This way all you bases are covered. I would not feel guilty however if you choose to take the advice of the other doctor. Medicine is a science, and everyone has a different opinion on how therapy should be pursued.

Dr. Lever is one of the best guys for HCM.

Make the best decision for you and your family. I have 3 small children and a wonderful husband. Personally, I don't want to take any chances of "cutting out early."

Try to relax and make a rational choice.

Regards,

Tricia

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[Re: When to get an ICD?]

Author: Lisa Salberg (---.dyn.optonline.net)

Date: 05-30-02 13:08

That is good advise Tricia, thanks for giving your input!

Lisa