HI guys and gals -

I did not mean to toot my horn in mentioning my ef = 45 currently. I am sorry if it came across that way. Actually it has been up and down for some time. I have slipped back often.

I have severe sciatica and osteoarthritis. And whenever I get an injection of cortisone into the spine (called an epidural) I slipp back into heart failure. I had 7 injections last year and lost a lot o ground.

This past year I invented a new technique to treat the sciatica without the need for cortisone. And by using that technique I have been able to go to the gym 0 a lot more than had been possible before. And it has been very difficult for me.

Actually I also have cancer and I had been getting injections of anti hormones for the past three years. Adn I also had gotten radiation treatments for 3 months. The treatments and the anti hormones were necessary to fight the cancer since I was too weak to get any surgery. But, of course they also would throw me back into heart failure.

So I have been on an up and down movement.

I do not consider myself no longer at risk from the "sudden death thing" and obviously cardiology does not consider me risk free either or they surely would have told me.

Actually every time I go to the gym - it irritates my sciatica so bad that I can barely walk up the three steps to the door to leave. And how long I can continue to use my experimental technique is a big unknown.

Raoulby

I did not accept it. My condition is too severe. It'd go off too much and I'd have to have frequent battery-change procedures and those are very painful. Besides, having that thing go off so much would be almost sadistic. It's really hard to face death, obviously, but I feel it in my gut that I shouldn't have it. I know it can be a super blessing for other people, just not me.

ritghtheart,

Thanks for sharing your feeling.

Probably I am too naive or I lie to myself, but I think I have accepted the idea of death.

I am curious, how do you know that in your case it will fire often??

Jesus

I average 10 runs of sustained V-tach a month but with the right settings and meds the rates are not getting high enough to get shocked. Anti tach pacing does not work on my heart so they keep it turned off. As far as battery change outs I have had five in nineteen years and I did not need any pain medication.
To anyone considering an ICD/Pacer the right doctors can make the word of difference.

HI

How do they change the battery????
That is a real concern for me too.
And I do not understand the - "and I did not need any pain medication" words.
Do they cut the skin?
And how often do you have to adjust the thing - my mother in law tells me she had to adjust my father-in-laws every week - and that it was a total pain in the ass.

Hugs, Raoul

Raoul;
The devices, ICDs PMs and CRTs, are hermetically sealed in a titanium can and the battery is inside. They do not change the battery, they change the entire device. They surgically reopen the original incision and remove the device while replacing it with another. The leads (wires) are left in place, and reused unless they exhibit damage or deterioration. Battery life averages 5 years but varies significantly by your usage. I know many people who have batteries that lasted in excess of 10 years.

As far as pain medication, I assume what he meant was after the surgery. I did not use any pain killers after my surgery. The incision was a little tender but manageable. During the surgery you are under anesthesia as they must test the device.

Adjusting the device - Unless your mother-in-law is a medical professional or works for a manufacturer, I would say that you misunderstood what she's trying to convey to you. The devices can only be adjusted using specialized software and hardware that is not available to the public.It is far too dangerous to an ICD patient for anyone to mess with the device settings, they can kill you inadvertently.

After the device is implanted, the technicians, usually works for the device manufacturer, will probably have to make one or two adjustments to the settings to fine tune it for your needs, but after that it's rare it will need any changes to the parameters. You do have to have the device interrogated (checked) periodically to ensure everything is functioning properly and see if any electrical problems are occurring with the heart. This usually takes 15 - 30 minutes and can be done at home or in the Dr office. Frequency is dependent on severity of your condition.

Again, I don't advocate for or against a defibrillator just providing information for your consideration.

Hi Robo

My mother in law is not a technician.
And if she says she had to adjust the icd/defib every week - i believe her.

There is a lot I do not understand about the defib/icd mechanisms, and I am quite afraid of them.

Actually one of my biggest concerns about the devices is dealing with the doctors and tech staffs in the offices - IN the past I have been completely unable to get any sort of help from them from any sort of questions . They are completely useless - and I will not rely on them for anything as important as a defib, or a pace maker. As far as I am concerned - they are all incompetetint (sp).

Also I have had reports from a few friends that they got MRSA from the surgery to insert a defib/icd. That is incredible. And these were from reliable sources who have MRSA now.

You and others seem to consider having the defib/icd inserted by cutting the skin to be very minor. Well, I do not consider any cutting of the skin to be mior any more - not since so many people have been getting MRSA.

Raoul

Hi Everyone,
I'm a Newbie here ....

In 2001, I survived a "Ventricular Fibrillation Cardiac Arrest". Shouldn't have, but did.
I was a Long Haul Truck driver at the time and had just returned home hours earlier from 3 weeks on the road. My son found me with no heartbeat on the living room floor. He had some life saving training and managed to get a few beats going. Between Paramedics and Hospitals (2 that night), my heart was jump started 6 times. My heart sped up to about 480 beats a minute before shutting down. I was kept on life support for 2 days, hospitalized for just over a month. I also recieved some brain damage that night.
At that time, they did not have an ICD to implant for this heart condition. (only 2 out of 100 people even survived). I was treated with a powerful pharmacutical pill called "Sotalol". Man, did that stuff ever mess me up. It caused very serious depression (they knew it would), so I was on serious anti-depressant's. Add to the mix the pills to thin blood and the pills for cholesteral etc. (way to many).
I was assured that without the cocktail of pills, I would be dead within 48 hours.
I did not expect to live more than 5 years .....

I became a much different person then I had been before. Friends and family started turning their backs on me. I had 4 nervous breakdowns and lost everything, including my home and livelyhood. Now, I rent a room and live on a very small disability. I LOST MY LIFE! .... And everybody in it.

I quit my Meds (so I could die) a few times, but then would tell someone and be taken to a hospital. Finally about 4 or 5 years ago, I was offered an ICD that could deal with my condition. Two days before it was to go in, I attended a pre-surgery thingy with the nurses.

Turns out I would need a caregiver for 6 weeks. The ICD would have been implanted just under the skin on the left side of my chest. They would run a wire (with a small screw on the end:) down from the upper left side, through the right side of heart and carrying back down to the bottom of the left side (ventrical?). Then they would "Screw" it in and it would take 6 weeks to be permanantly attached. During that 6 weeks my motions would have been severely restricted. (and I'm all alone)
Picture yourselves standing with your arms hanging straight down to your sides. Now, imagine someone wraps duct tape around your arms (and torso) just above your elbows. Now try moving your lower arms below the elbow only. That becomes your range of motion for six weeks.

I had to refuse the ICD. Finally in May /07, I quit my meds without telling anybody. I wanted to die. I used to have a life. Every time I thought I saw a light at the end of the tunnel, always turned out to be another train.

Saw my cardiologist this past spring. He was extremely surprised to hear I had quit the meds 3 years ago and lived. He went and looked it up, came back in and told me the longest living person on record without any kind of medical intervention (pills or ICD) was 23 months. I'm here to say that my life has improved slightly since I quit all those meds. I only take vitamins and one ASA 81mg daily. Since quitting the meds, my mind started to clear up and my rage has slowly subsided. Although I still have mental (brain) issues, I think more clearly.

I strongly believe, that had I had a loving relationship and had a strong support system around me, things would have turned out differently. As it is, I've excepted the fact that I've lived an excellent and full life up until that point almost 10 years ago. Life now is very empty.

My affairs have been in order for quite some time now, and I can only hope I go in my sleep painlessly, just like before.

Thank you for reading if you got all the way down here.

Agudman,

Many thanks for your entry, I am sorry that your life had changed so much but obviously you are a survivor ... you survived the 2 between 100 ratio, when I had my MI I survived a 5 to 100 ration (was a big one) and I think that after those surviving rates, the chances of dying without Defib can be about the same.

Do you know why was your fibrillation and CHF produced (I see in your profile that happened at the same time) Did you suffered a MI??

Jesus

Hey
Welcome to the group Agudman. Lots of horrible stories here and lots of good people. Hang around and join in the fun. I turned down a defibrollator in april 2008 and have been getting flack from cardiology since.

Not all of the doctor's little toys are so great. They have too much fine print hidden in them.

Raoul

bringing this thread foreward

I chose the ICD. I had no problems at all during or after the surgery. I've only had the device since June, but was advised by more than one cardiologist that I needed one.

I would get on a low sodium diet ASAP and watch the fluid intake.

Good luck to you in making your decision. : )

Hello,

I am 56 yo and was diagnosed with CHF in September 07. My EF at that time was about 28%. I was put on coreg, a diuretic, and an ace inhibitor. When I was diagnosed (via echo), I was told that I was to be admitted. I walked AMA.

In November I had an angiogram and although my arteries were completely clear, my EF was estimated at 25% and it was noted that I had damage to my left ventricle probably due to a silent heart attack.

My cardiologist began heavily pushing the defibrillator, even to the point of calling me at home and screaming, "you could DROP DEAD at any minute."

At my next appointment, I brought my husband to back me up and told her that I would only be treated with meds, no interest in any more testing or devices.

My feeling is this -- quite honestly, I feel absolutely fine. If I had an implant, I would feel sick. I would constantly worry about it firing. Iwould rather "drop dead" than have to live my life worrying about this device. I am not comfortable with an implant. Some people can deal with it, but not me.

I know myself better than my cardiologist does. As far as not having any more tests, again - I don't need/care to know if I'm doing worse. In my mind, I feel like I'm doing great. That's all I need.

Now my cardiologist visits are about a year apart. She tells me that if I had an echo, I would probably be pleasantly surprised. Well, that's good enough for me. I'll keep taking my meds, but that's as far as it's going.

I have never been hospitalized or to the e/r with my condition since my diagnosis 4 years ago.

This is just my decision and I am comfortable with it.

Good luck!

Maryteresa

Many Thanks Maryteresa for your post.

Your reasons are exactly the mines .... finally I found someone thinking similar to me on this topic.

Jesus

Jesus, I was glad to see your post too. I feel too many interventions are the norm these days Just because the technology is there doesn't mean we must choose it.

Nice to meet a kindred spirit!