Defibrillator????

[Marge]

Well, I haven't been to VR.com much lately because I feel so good that mostly I forget that I even have "heart problems."
But -- I had another echo last week and today cardio called and said he is recommending I get a defibrillator!
Knocked me for a loop 'cos I have been feeling fine, have NO shortness of breath or other symptoms, have been exercising with very little tiredness, etc. My one concern was my fast heart rate (into the 90s and sometimes into the 100s) but I started taking digoxin in June of this year, and it has settled down considerably -- usually in the 60s and no more pounding like I was having.
Cardio says, however, that the "guidelines" dictate that anybody with an EF as low as mine is at risk for cardiac arrest & should have the ICD. (My EF is 30-35 % according to the most recent echo & the two echos prior to that.) So he has referred me to an electrophysiologist (EP) for further consult.
I must say, I am not happy about this. Am not particularly alarmed by prospect of surgery (ICD implant seems minor after you have had OHS, and I recovered easily from OHS) -- but am wondering about how having this device will affect my life. Would I be allowed to drive? I know I wouldn't be able to have MRIs -- what other consequences?
Right now I am trying to put together a list of questions to ask the EP -- I would welcome suggestions for the list, also any experiences any of you may have had with ICDs, and just general discussion of this subject.
Thanks for any input!

 

[marky]

Hi marge..

I have a defibrillator (AICD) I got it 2 years ago.
Mine was because I have another serious heart condition known as Prolonged QT which can cause sudden death (lucky me )
I had an episode in late May04 that almost killed me.. I went into Vtach and went unconscious.. in and out of consciousness etc.. so my cardio insisted I get one.. Mentally it took till Aug for me to agree..

It was much harder for me mentally to deal with than the OHS. That is me.. many others find it a breeze..
I am very tiny so the AICD shows up pretty well on my chest.. and is as big as my left ****
If I were a tad larger in both areas.. it wouldn't show so much.
I have grown used to it.. and am blessed it has not fired yet

If I remember correctly... I was in the hospital 24hours came home with my arm in a sling..wasn't allowed to raise it above my head for 1 week.. but I drove after 1 week too.
It just left my left chest muscles sore for awile. Not really painful..just sore.
Please feel free to pm me if you want to know more.
HTH

 

[Ross]

It's one of those things that unfortunately, if you need it, you need it, it doesn't matter what the consequences are of having it. The main consequence is, if you don't, we might not have you with us for long.

 

[twinmaker]

Hey Marge! I too have a defibrillator. Mine was put in because when the docs were doing a routine check on my pacemaker they found that I was also having ventricular tachycardia. In other words, the VT could cause me to go into cardiac arrest and die before help could arrive. But like Ross said, it doesn't really matter why a person needs one...let's just say it's better than the alternative.

I also do understand how you feel about getting one. I too was more concerned about how the ICD would affect my life than I was about having the two OHS. The surgical part is a breeze compared to the OHS, but the mental part is a little tougher. If you think about it too much, you wouldn't get out of bed in the morning. Some people live in fear of the defib going off. They will tell you that it feels like a horse kicking you in the chest. Thank God, mine hasn't gone off yet. I've had it for a little over two years. You can also lose consciousness therefore, the problems about driving. Most states have certain laws now about people with ICD's. I think most states and doctors say that you can't drive for six months after your defib. goes off. They also factor this decision with the reason for the defib. going off. Everyone's situation is a little different. That's probably the thing I grapple with the most...the thought that it could go off while I'm driving and I would kill somebody else and also the thought of losing my freedom of driving whenever I feel like it and being dependent on someone else. I have to tell myself that in my situation, since my ICD hasn't gone off yet and it's been over two years that I'm OK to drive. My doctors tell me I am. But then again, it's how many "head games" and "what if" games I want to play with myself. Someone did a study recently that found that people driving with ICD's caused fewer accidents than people without them. Now I know that there are many more people without them out there driving, but this was factored into the equation. It did make me feel better though.

The other thing that is really comforting is that I know if my heart goes into ventricular tachycardia and I need that life-saving shock, it will be there. And that really is a comforting thought. Think of it as a little added insurance. I'd be more than happy to answer any questions you have. You can pm me anytime.

Good luck and try to keep your chin up. People like us are really blessed to have these things to help us out. I know you will feel better about this after the initial shock wears off a little. LINDA

 

[Marge]

Thank you all for your replies.
I know that you have to do what you have to do regardless of the "consequences."
I've faced this several times in my life -- in my 30s when I had to have my left arm amputated after major thrombosis developed due to a congenital arterio-venous fistula apparently aggravated by trauma in an auto accident -- and again, two years ago, when I had the OHS.
So I am pretty sure I can deal with an ICD! (My dad had a pacemaker -- iit never seemed to bother him much & he died at 96.)
(One thing I know, since I have no left arm at all, I don't have to worry about it being in a sling, or not lifting it above my head, or lifting weights with it, etc., etc. Win some, lose some! As a matter of fact I was wondering exactly where they'd place the ICD anyway, since the surgery that took my arm also took most of my shoulder, including left collarbone, etc.
-----
I guess what bothers me is that I don't, as far as I know, have anything like ventricular tachycardia or any of those other things you guys are talking about.
My cardio is applying what he calls "guidelines" -- anybody, he says, that has a "low" EF, is a candidate for an ICD, and he says 30-35 is low enough to be within the guidelines. I asked him, is there ANYTHING that indicates I need an ICD other than the guidelines re EF. He didn't really answer that. (I've had this same EF since my cardiac cath in late 2003.)
-------
Is there anybody here that got an ICD just because they had an EF in this range? With no other complications such as ventricular tachycardia, etc.?

 

[twinmaker]

Marge, they sometimes put ICD's in your abdomen or I guess they could put it in your right shoulder. I'm sure the doc can advise you on that. I don't know about the guidelines that your doctor is speaking about. Maybe someone else here can shed some light on that. Is you doctor the same one you've had for the last several years? You could certainly get a second opinion. LINDA

 

[marky]

Marge..
I dont' know the reasoning behind EF either..
but as far as placement..
mine is just above my left breast.. about 2in below my collar bone. If that helps

 

[Susie Q]

Defibrillator??

Defibrillator??

Marge,
In 1998 after a massive heart attack, emergency quadruple by-pass surgery, multiple complications, one being amputation of left leg right below hip due to cardiovascular disease, my husband's EF was 33-35%. After an incident in March of 2005, his EF was reduced to 20%. In February of this year he had a bi-ventricular pacemaker with a defibrillator implanted. In addition to the low EF, his heart rhythm was in a-fib. An electrophysiologist in Houston performed the procedure. In order to give you an idea of its location, at least in my husband, I used a ruler to measure its placement. It's located on the left side, about 2 inches below his neck & about 4 inches from the incision in his sternum. It is a slightly raised area, approx. 3" by 3" & appears to come close to the underarm area. My husband thinks I'm a little "looped" using the ruler to obtain all these measurements, but I thought it might help you.

He was not allowed to drive for 4-5 weeks. Because of his left leg's amputation, he wears a prothesis & uses two forearm crutches. This made recovery a little trickier. During the recovery period, he didn't wear his prothesis since he was basically wheelchair-bound for about 1 1/2 months. Tranferring from wheelchair to toilet, to shower chair, etc. was difficult. We never realized how dependent he was upon his left arm to balance & push off from a seated to a standing postion & vice-versa. However, he's not had any trouble with it since then & never even talks about it.

Susie Q

AVR - 11/8/05
MVRepair - 11/8/05

 

[Marge]

"Marge, they sometimes put ICD's in your abdomen or I guess they could put it in your right shoulder. I'm sure the doc can advise you on that. I don't know about the guidelines that your doctor is speaking about. Maybe someone else here can shed some light on that. Is you doctor the same one you've had for the last several years? You could certainly get a second opinion. LINDA"

I think putting it in the right shoulder is a little unrealistic, since all the websites I am looking at say you cannot raise the arm nearest to the implant or use it much for quite some time after the implant.
It would mean I would be basically helpless since I have no left arm. I never got a prosthesis -- it would be difficult to get a useful one since I don't have much to attach it to since they took my shoulder as well as the arm itself -- besides, I have managed very well with just my right arm since the amputation, now over 20 years ago.
Implantation in the abdomen -- yes, I saw from a website that that is sometimes done for "cosmetic" reasons. Of course, at this point, with the arm amputation as well as the OHS scar I am way past worrying about "cosmetics," LOL!
But I still have to see the EP and of course I will ask him [her] about placement. I am way ahead of myself here but trying to think ahead as much as possible so I don't forget anything important to ask the EP.
I'll ask about a second opinion. It's a little tricky for me since I am in the Kaiser system & would only have access to another Kaiser doctor. My bet is that they all follow the same guidelines.
THANKS v. much for your response, Linda -- much appreciated.

 

[twinmaker]

Marge, It seems like I read somewhere that when ICD's were first implanted, they put them in the abdomen area. I'm not sure of the reason why though. It certainly seems like that would be the way to go for you in your situation. I'll be anxious to hear what you find out when you talk with the electrophysiologist. Keep us posted. LINDA

 

[Marge]

I've been researching & have found a number of articles on implanting ICDs in people with my EF range. Seems like it's fairly new to do it simply because of a low EF -- but definitely increases survival rates -- fascinating. I never thought of myself as a candidate for one but I guess I am. Cf for instance http://www.suddencardiacarrest.org/learnsub.asp?ID=72