Please help...I need advice

I have had my ICD since late December when I flatlined in the OR during an EP study. After it was implanted, I got shocked in January, June, and then last week I was shocked 5 times in 50 seconds. I had to be taken to the emergency room in an ambulance and stayed for a few days to recover.

How many times do people normally get shocked? I am so scared to do anything that might raise my heart rate and get paranoid anytime my heart skips a beat.

8 Comments

Doctors and communicating

by oldearthworm - 2015-08-23 05:08:31

Evidently, the medical profession is not dissimulating this info as they should be .. I'd really be upset , were it me .. talk about scary and EOL ..

bcohen

by Grateful Heart - 2015-08-23 11:08:50


Write down your questions and ask your Doc. Were these appropriate shocks or inappropriate shocks....that makes a difference. Is there a problem with your ICD or was it lifesaving?

I'm sorry you went through that but we need more info.

Busrider: from your Bio, you do not have an ICD/.....defibrillator, so you will not receive shocks from your device.....no worries.

Grateful Heart

medical care/ICD

by hopefulheart - 2015-08-24 07:08:14

Hi!
On my second ICD.....you certainly do need and deserve communication from your medical care. You mentioned being hospitalized for several days. Start there.....why were you admitted, what was found during that time and what was ruled out and then, where you are now, any limitations and what to expect in the future. In a positive medical relationship you should not have to ask about the above, but if it is not provided, ask yourself. If you still do not receive the care/info you should have, seek new quality medical care. You are not paranoid for having to deal with less than quality care, and that includes diagnosis, treatment, prognosis and information about all three. I hope you have that soon.
hopefulheart

Follow up-OP (2)

by bcohen294 - 2015-08-25 03:08:17

Full Episode:

I was playing with my dog when the first shock hit me. then the next one, and the next, and the next, and the next. All within a minute. I couldn't move and 911 had to be called. My heart rate was 255 and my ICD limit was 240 (now it is 260). I just do not understand how I can keep my heart rate down and still live an active lifestyle. This last episode really traumatized me and every time my heart skips a beat i am scared I am about to be put back on the ground.

I do not feel safe inside my own body and it is starting to drive me insane.

follow up-OP

by bcohen294 - 2015-08-25 03:08:21

I have been shocked by my ICD a total of 7 times since January. I'm a;ways reading these stories on here about how getting an ICD really improved their quality of life. I don't understand why I am getting shocked so much. They have all been appropriate shocks but each one of them knocks me on the ground.

I guess the real reason I am complaining is because I am only 21 years old and I can't even go up and down the stairs in my apartment without going into SVT for at least a few seconds.

How do you all cope with the fear?

Options

by Grateful Heart - 2015-08-27 10:08:49


At 21, I hope you are not going through this alone. Not that you couldn't but it helps to have someone there for support no matter what age.

What does your Doctor say? You may have some options but you have to sit down with your Doctor and have a serious discussion. Bring someone with you to ask questions you may not think of and to listen to the answers....a parent or trusted relative.

I have an ICD and so far I have never been shocked but I empathize with you. Cabg Patch has the experience in that field. You need some answers and peace of mind. Hopefully, you like and trust your Doc. See what his plan is going forward.

Grateful Heart

Not unusual...

by donr - 2015-08-30 02:08:58

...reaction for someone going through successive Jesus Jolts!

You've heard about PTSD (Post Traumatic Stress Disorder)? Well, you are probably suffering from that!

At age 21, you probably associate that w/ military folks, but it can happen to ANY person who suffers a traumatic incident - & getting that JOLT can certainly be traumatic!

If, as you described, many or all of your Jolts were appropriate, you have a combination cardiac AND psychological problem. NO you ARE NOT insane, but suffering from a perfectly normal reaction to repeated trauma.

You need help on two fronts - Cardio & shrink.

The cardio because the Basis of all your problems IS Cardiac. He/She has to address (If it is possible) the cause of your ICD jolting you as frequently as it does.

Find yourself a good shrink who SPECIALIZES in PTSD issues, not just any old Freudian nutcase. They are out there, trust me. Among their patients are cops, firemen, rape victims, mugging victims, auto accident survivors, aircraft crash survivors, cancer survivors, etc. Oh, yes, I forgot - heart attack & Sudden cardiac Arrest (SCA) survivors.

Remember the Boston Marathon bombing several yrs ago? If you look closely at the building right behind the exact spot where the bomb was placed, you will see an entrance to a stairway leading to the upper floors above a running shop. It leads to an office where a shrink holds forth. She is an expert on PTSD & reported that there were more than one of the people involved in that episode that suffered PTSD after effects.

You are not inventing the wheel w/ your after effects of Jesus Jolts, so seek appropriate help. Caught early & w/ a KNOWN cause, help is much easier to get.

Donr




Inappropriate Shocks

by babuc - 2015-09-08 08:09:58

Hi,

I am almost more than half way in to my 2nd ICD Combo device. The first lasted 4 yrs and am already in to 3 years since implanting the 2nd. I can assure you, though frightfully expensive, I am alive today because of the ICD and the great doctors I have been lucky to have.

During the past 7 years, I was shocked only once when I blacked out for about 29 seconds. But I have heard from my doctors about cases with faulty configuration of the device and wrong lead connections which can lead to serious issues. It is most important that a competent doctor/technician does the configuration of the settings appropriate for the patient.

Regular interrogation of the device and need based modification of the medicines would be helpful.

Keep well.

Babu C

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