Page 1 of 1

Can everyone with an icd expect to get a shock at some time

Posted: April 25th, 2017, 11:19 am
by Poppy
I am wondering if some of you can enlighten me. It is now nearly a year since my event with VT. I have made quite a lot of progress since then. From having quite a lot of fatigue last summer to a gradual increase in strength during the Winter months. I now feel reasonably normal. Some of my meds have been reduced in strength and I have been allowed to stop the statins and have had various tests on the device itself.

The trouble is here in the UK is simply that the NHS don't really discuss your individual case. You tend to be on a conveyer belt. They stick the rubber bits on you, tell you that they are going to speed up your heart, which can be a bit painful, although it doesn't last long.
I have not had a shock and don't want one, but is there anyone out there who can boast on never having been shocked ? Would be interested to know. Thanks.

Poppy.

Re: Can everyone with an icd expect to get a shock at some time

Posted: April 25th, 2017, 11:26 am
by freckles1880
Poppy wrote:I have not had a shock and don't want one, but is there anyone out there who can boast on never having been shocked ? Would be interested to know. Thanks.

Poppy.
From every survey that we have done it appears that most of us have never been shocked. I don't worry about that as when I do get the jolt I hope the unit just saved my life. The folks I worry about are those who get the shocks when they should not have. Not many but it is usually a hard time to follow.

wavhi

Re: Can everyone with an icd expect to get a shock at some time

Posted: April 25th, 2017, 10:44 pm
by 4EverHopeful
Hi Poppy,

I've had my unit since 2012 and have not received any shocks. As Bob stated, I believe that there are more of us on this site who have not received a shock then those of us who have.

If you break down the numbers between those who have been shocked as an "appropriate shock" vs a "non-appropriate shock", I believe that you will find that the "non-appropriate shocks" have been shrinking over the years due to more advanced technology or units now being implanted. That leaves the "appropriate shocks" which totally depends on each individual's heart condition, diagnosis, doctor's expertise, compliance to treatment, or sometimes a heart just misbehaving for no reason at all regardless of how well of treatment one receives, it's beyond our control and a mystery at times for sure...

Re: Can everyone with an icd expect to get a shock at some time

Posted: April 26th, 2017, 6:26 am
by okapi
Poppy wrote: I have not had a shock and don't want one, but is there anyone out there who can boast on never having been shocked ?
I think it is worth mentioning that while a shock is not exactly fun, it isn't worth getting anxious about it. It is over very fast and makes me feel a lot better instantly so I quickly move on to being most bothered about having just drained a bit of power from the battery. I was first zapped shortly after getting the implant before it had been properly calibrated and am in some ways glad that I then knew what to expect from the experience.

Re: Can everyone with an icd expect to get a shock at some time

Posted: April 26th, 2017, 12:47 pm
by Poppy
Thanks very much for your reassuring replies to my query,

Poppy.

Re: Can everyone with an icd expect to get a shock at some time

Posted: April 27th, 2017, 11:26 am
by TruckerRon
Sometimes two people starting out with the same heart problems can end up with very different experiences with the D part of their device.

I'm in the LBBB group running around with a CRT-D implanted in my chest. Since my SCA and subsequent initial device being installed in Sept 2009, I have had no shocks. During the first year I had a few runs of VT that I was paced out of; adding Sotalol to my daily mix of pharmaceuticals eliminated those.

Others starting with the same problem have had different experiences; they have responded differently to their medications or have experienced other health issues, like needing heart valve replacements.

Re: Can everyone with an icd expect to get a shock at some time

Posted: June 16th, 2017, 10:14 am
by manplex
Poppy ,
I thought I was in that group. At my last device replacement , which was 2 years ago and
after 20 years of no zaps, I was seriously thinking, why?
Lucky I kept it because 2 years later - - and they tell me the zaps were appropriate- all
17 of them! it probably saved me.
Would have gone on a while too if I had t gotten an amiodarone drip.
Harold

Re: Can everyone with an icd expect to get a shock at some time

Posted: July 7th, 2017, 5:47 pm
by jan122016
Hi,
I've had an ICD for 7 months and have gotten shocked 4 times. I just got a diagnosis of cardiac sarcoidosis as the reason for the ventricular tachycardia, so I have the ICD for a totally different reason. The standard treatment for sarc is steroids, and they have not been effective (6 weeks so far), as I'm still getting VT. Of course, since they said I could go back to my regular activities I was out doing 2 hour bike rides. I have an ablation scheduled for Monday.

I'm a little envious of you folks that haven't gotten shocked and aren't getting VT anymore. Keep up the good work!

The most ironic thing about this is insurance said my ICD wasn't medically necessary (it's being appealed ).

Jan

Re: Can everyone with an icd expect to get a shock at some time

Posted: March 26th, 2018, 12:06 pm
by PSchorr
I've only had my ICD since December, 2017 and have been shocked 4 times (just 2 incidents: one time, one shock; the next time, 3 shocks in a row.) I live in such terror of getting shocked. They are over fast, and do not hurt once it's over, but they knock me to the ground, and cause such post traumatic stress. I've had 2 ablation attempts which were unsuccessful, and finally a 3rd recently where they ablated an area in my left ventricle. I'm hoping that between the ablation and my medications, I will not be shocked again. I have ventricular tachycardia which they suspect was caused by a virus that I contracted that damaged a small part of my heart.

I am finding it so difficult to live with the fear of getting shocked, even though intellectually, I know it has saved my life twice. Maybe with time, I will not be so afraid of my ICD.

Re: Can everyone with an icd expect to get a shock at some time

Posted: February 26th, 2019, 6:01 am
by Jiminrio01
hello, I have just discovered this group. I would like to share my recent experience. For fifteen years since it was implanted in 2004, my ICD never activated once. I didn't even know what to expect if it did. On February 16 2019 I had just completed a ship inspection in Santos and was conversing with the Captain, when I felt a hammer blow in my back. I thought someone had punched me. I turned round, but no one else was there. Then it hit me again and I realized it must be coming from the ICD. I lay down and told the Captain to call the stevedore's ambulance. After eight shocks in succession it stopped. I was able to get down to the pier with assistance, without more shocks. There were more shocks in the ambulance and I was given a sedative. By the time I reached the hospital and someone covered the ICD with a magnet, I had suffered 64 shocks. A technician was called from Sao Paulo, who discovered that the electrode had fractured. I was kept in intensive care under observation for five days, then transferred to an apartment to wait for the medical plan to authorise to replace the damaged electrode. I have read that it's recommended to change the electrode after ten years. mine was 15 years old. If the technician could tell it was fractured, would it not have been possible during the revision a month previously to know that it was in a dangerous condition? I have now lost all the confidence I had in the instrument and I'll be carrying a magnet with me in future. The battery used up 40% in two hours. If I hadn't been so lucky to have assistance at hand, it wouldn't have stopped till the battery was empty and I doubt if I would have survived. Never again. I would be interested to know if this happened to anyone else. All patients with ICD's should be aware of this.

Re: Can everyone with an icd expect to get a shock at some time

Posted: March 10th, 2019, 3:23 pm
by thatgirlLoLo
Thank you for sharing. That is scary! I’m thankful it turned out better than it could have.

Re: Can everyone with an icd expect to get a shock at some time

Posted: March 10th, 2019, 6:11 pm
by mykidsmom
yes happened to me about 4 years ago...i wasnt so much scared and afraid as annoyed....i was just finishing my christmas shopping....the first shock was a mother of a shock i thought id actually shot thro the chest.....then 22 more followed ....deffo not as bad as the first one.....i crawled out to my car rested for about 20 mins then back into the shop and finished the shopping and drove home.....12 hrs later following a heart attack i had 4 cardiac arrests over a 4 hr period...living with heart disease is nothing if not interesting and keeps you on your toes

Re: Can everyone with an icd expect to get a shock at some time

Posted: March 10th, 2019, 6:23 pm
by TruckerRon
mykidsmom wrote:
March 10th, 2019, 6:11 pm
yes happened to me about 4 years ago...i wasnt so much scared and afraid as annoyed....i was just finishing my christmas shopping....the first shock was a mother of a shock i thought id actually shot thro the chest.....then 22 more followed ....deffo not as bad as the first one.....i crawled out to my car rested for about 20 mins then back into the shop and finished the shopping and drove home.....12 hrs later following a heart attack i had 4 cardiac arrests over a 4 hr period...living with heart disease is nothing if not interesting and keeps you on your toes
So, if I look up "shopaholic" in an online dictionary should I expect to see a video of you crawling from your car after a massive ICD shock to finish your shopping?

Re: Can everyone with an icd expect to get a shock at some time

Posted: March 11th, 2019, 4:04 pm
by mykidsmom
hahaha rondaron, have you been chatting with willie lol......but heres the thing...i had the 2nd sca in the hospital that night.....and opened my eyes to this really good looking (according to willie) nurse straddling my chest...(she didnt realize i had an ICD) and as shes climbing down off me and the bed i got this feeling another sca was about to happen....(only time i ever got that warning) and im yelling at willie its going to happen again in the glove box of the car can you get out the envelopes ive left for the kids, i forgot.............) and i died so the sentence never got finished.... lol..

that christmas caused a lota stress....i got the shopping done...but those envelopes sat in the car till i got released from hospital after the bypass lol....we all forgot about them so the next day i had to crawl to the mall with the kids with willie in tow moaning and complaining.....