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Hi, I am new

jb25
  • By jb25
  • Posted December 21, 2008 at 12:45 pm · 26 replies
  • Shared with the public
0 Recommendations

Hi all,

I am 29yrs old & I am from UK and have had an ICD for about 6yrs. Does anyone else suffer from anxiety because of their ICD?

If so would love to hear from you.

JB25. xxx

Explore topics in this journal entry and replies:

Heart transplant Surgery Sudden cardiac arrest Aspirin Meditation Lexapro Beta blockers Anxiety Pain Coreg Pacemaker

26 replies

Johnie

Hope you get some good definitive answers, Lucy. By the way, I really left a huge hole in my previous reply to your post about how you've been feeling. You know, I felt just awful just prior to coming home from the hospital and for several months afterwards. Only recently have I become aware that most, if not all, of my peculiar feelings were caused by the host of medications I was on. Since they didn't know what had caused my SCA, they threw everything at me and I was the kind of person who didn't even take aspirin but a few times per year. I wish I had known then what I know now about drug side effects! You can look on the Internet about the drugs you are on and it will probably have your symptoms listed.

Lucylocket

Hi Johnie,

Thanks for the reply. I am 37 years old they think I have an enlarged heart from a possible virus but recent MRI shows that it has gone down a small amount. I appear to have more ectopics than before the most recent ablation. My consultant is from Papworth Hospital UK and wanted to give me a better quality of life by getting rid of the VT as I said he is confident he has ablated the area as he was unable to induce it after the procedure. Thanks so much for your info on the ICD I will go back and speak to someone before I go any further with it.

Johnie

Dear Lucy,
You are in a difficult position being told you "can" have an ICD "if you want one." Wow. What you need is an expert in the field to tell you how sure they are that they fixed the VT problem with the second ablation you had. After my second ablation (9 hours) my electrocardiologist was "hopeful" but not certain he had found the spot where my electrical pathway was going wrong and had ablated it. However, he wasn't positive, so he advised the ICD. After one week home, it fired making him sure he had not found the problem. So, back for another ablation. This time he was certain he had found the exact spot. He and the other cardiologist in the room -- there out of fascination with my case, I think :) -- got all excited along with my doc and they both said "Yes! There it is!" Now, if your heart doc is THAT sure, then I would say you probably don't need the ICD. If they are just hitting "likely spots" as they did with my second ablation -- then I would think you would want the ICD. Does that make sense? The peace of mind you spoke of is SO important. With the ICD you can go to sleep without worry, go out on your own to shop, be home alone without worrying yourself or your family. Regarding your general feeling of "aches and pains" -- may I ask a couple questions? What is your heart rhythm now? When they did EKGs on you before you left the hospital, were they normal? Also, what is your heart enlarged from? Is your health good otherwise? How old are you? As for my experience -- yes, I felt overall pretty crummy when I first came home. I had been in ICU 6 weeks altogether, without getting out of bed until the last two days. I had to get my strength back. And, yes, there are many little aches and pains associated with the shocks and CPR (did you have that?). You could have a cracked rib from CPR, as I did. Much of your soreness could be from lying abed for 2 weeks, also. The bottom line, as far as the ICD choice is considered: make SURE you have 100% trust in the person putting it in (find out how many they have done and how many were done successfully). Make sure the model they are using, as well as the wires are not the ones recently found to be faulty (many here in the US had to be redone). The recovery period is not bad. Bit of a pain not to have full use of your left arm for several weeks, especially if you're left handed (like me!). But, it was not a great deal of pain, just a little sore. It has not caused me a bit of trouble. If you have a really good doc, they just put in down in a little pocket of muscle under your bra strap. Mine doesn't stick up at all above the skin. Tiny 2 1/2 in long scar. You just go in every few months and they test it (in a doctor/clinic office) to make sure it's picking up the signals from your heart ok. This is not painful at all, takes just a couple minutes. Hope this helps your decision-making process. Johnie

jb25

Hi Lucy,

I was born with a heart condition & had a total correction when was a baby. I was fine until I was 23 & started suffering from palpatations. After a lot of tests at the hospital they advised me I would need a icd fitted I was 24 at the time. I don't think I was too young, they was a few people of simillar age to me that was born with same condition & was now having to have them fitted. I guess it isn't the norm but not unusual I don't think. When I go for my check ups they seam to be quite a varried age group, I never feel like I am the youngest! I am now almost 30.

Jb.

Lucylocket

Hi,

You seem young to have an ICD fitted can I ask why you have one?

Lucylocket

HI Johnie.

I have just been reading about your experience regarding your heart and what the feeling is when the ICD goes off.

I have posted should I have an ICD fitted as I do not know if I should have one for peace of mind as I have had various episodes of VT over the past four months starting in October where similar to you just passed out after feeling dizzy and was shocked at the hospital spending 2 weeks before my ablation at Papworth Hospital in England. 2 weeks later the same again rushed to hospital and shocked then back over to papworth where I was placed on a higher amount of beta blockers and had to wait to go in for a 5 hour ablation. This has taken place 2 weeks ago where whilst ablating another VT popped up which stopped me breathing. I went on to have another 4 shocks. After the surgery and MRI scan the consultant felt it was sucessful and that my enlarged heart appeared to be slightly smaller. He said that I could have an ICD if it would give me more confidence. I really do not know what to do.

Also when you were sent home after your ong ablation and shocks did you feel generally unwell. I have aches and pains which I did not know I would have, could that possibly be from the shocks as well as the procedure?

Lucy

Lucylocket

HI Johnie.

I have just been reading about your experience regarding your heart and what the feeling is when the ICD goes off.

I have posted should I have an ICD fitted as I do not know if I should have one for peace of mind as I have had various episodes of VT over the past four months starting in October where similar to you just passed out after feeling dizzy and was shocked at the hospital spending 2 weeks before my ablation at Papworth Hospital in England. 2 weeks later the same again rushed to hospital and shocked then back over to papworth where I was placed on a higher amount of beta blockers and had to wait to go in for a 5 hour ablation. This has taken place 2 weeks ago where whis

ttinmass

Hi,
I have had my ICD for about 1 year and half now.
At first I was not happy about his thing being inside me. But now it's just like my left arm. All of my freinds with they had one as funny as that sounds. I am feal lucky to have such a life saving device and even better knowing that this will save me. Think of it as having 911 in your chest and your need 24-7 I hope this helps. I am 33 years old.. hope the best for you buddy!

Mary1

Hi Blake,
Yes, it does make sense that you were told not to scuba dive or kayak anymore. They don't want you to do anything that might jerk the wires out. (Although it would be very difficult to do.) I was told not to ride rollercoasters anymore. :-(
Mary

scorpio2321

I'am 28 years old with an ICD and pacemaker. I'am very lucky to be alive. I've been living with it for a year now with no events. I'am not afraid of it shocking me.I remember dying twice .I felt I was in a safe place.

blake76

Thank you JB&Mary

Yes finding this forum has been a comfort to find others of a similar age with an ICD.

I'm sure i will get used to it. I enjoy scuba diving and kayaking which I have been told I cannot do (is that right??) but i'm sure i will find something else, and snorkelling will just have to do!

JB, re your anxiety, I know i'm new to the icd but I guess i was "lucky" that a few hours after the icd was fitted, I passed-out or something. Anyway once they brought me around they tested the icd and kicked it into action a couple of times at different rates. It felt just like very small electric shocks and that was all i noticed.

Thanks again

Mary1

I can't either. It was my "preferred" sleeping position, but I got over it! :-)

jb25

Hi, yes Mary, I have that too on a night if I turn a certain way I can feel it although it doesn't hurt. I can't sleep on my left side anymore as it digs into my armpit!

Mary1

Blake,
I agree with JB. Having an ICD doesn't really change much in your every day life. I did notice, however, that yours was put in very recently. It took me at least 3 months to get used to mine. I felt it with every movement, although it didn't hurt. Now I just mostly notice it at night if I turn a certain way.
I hope you are well. I can't believe your cardiac arrest was only a month ago. I hope you find comfort in this forum.
Mary

jb25

Hi Blake

To be honest it doesn't really affect my everyday life. I carry on as I always have done. I can't feel the ICD inside me. The only times it bothers me is when I feel a few extra heartbeats & it sends me into a state of panic that it's going to fire & what it would feel like but apart from that. It did take some getting used to. When I first had it done I was in a lot of pain but then I soon forgot about it and it doesn't bother me. If you have anymore questions or worries, please feel free to send me a message.

JB. :)

blake76

Hi JB25,

I've just signed up too. I'm 32 and I had a cardiac arrest on the 17th Dec 08 and an ICD fitted on the 23rd Dec 08 so it is all a bit new at the moment.
I am keen to know what it is like living with the ICD and how it affects your day to day living?

bingo

Hi,
I'm a 57 year old female. I have had an ICD for the
last 4 years. Sometimes I get anxious about it. I
have actually been terrified. I take Lexapro for my
nerves. If I didn't I would be crazy by now.
Please try to get your mind on other things. Try not
to worry about it. It saves your life. It keeps you
from dying of sudden cardic arrest. I have been
shocked from mine several times.
Good luck and I hope you don't get shocked at all.
Maybe we can be friends.
Bingo

Bus

jb25 I have fear of ICD shocks after my 6th shock in 32 months and I do experience anxiety just as I am falling off into a deep sleep. That is when most of the shocks have happened. I am thankful for the ICD extending my life 2 1/2 years but have had about 32 Phantom Shocks that feel like 1/4 shocks that do not show up on the ICD recorder. My Dr. says the shocks are in my mind. (My Psychologist & my wife think I can feel the ICD doing something - it is an imbedded computer) Our mind is powerful and I figure it puts out a quarter of the electricity of the ICD. (Enough to light a 15 watt for 1/2 sec.)

Now when I am trying to rest and my mind starts fearful thoughts I re-direct it positively to awaken hybernating heart muscle damaged from 10 prior heart attacks. I now do a creative visualization & meditation to re-grow my body, like I could when I was in my mother's womb -I feel as if I did it once before. Does it work? I don't know yet. I will have to live a couple more years to prove it to myself.

The PLACEBO effect of the above meditation does help me sleep better with fewer Phantom shocks and less fear of shock/death. Doctors say placebo effects are 30-40% effective.

Bus Awakening Heart

nettesgoal331

hi jb25
you fears are very much common. i am a medical professional in the field, and i often hear the concerns of pts ith icds. i even have had to get older pts that where war vets get phychological help because after a shock they had wakeups @ night with fears. or phantom shocks..please discuss any concerns with the physcian following up ith your cardiac conditon. that ay they are in tuned to all your needs both physical and emotional. most pts are simply too afraid to talk about this ith their mds but they need to know. reaching out for advice is just a good start.
net

Johnie

Hi Scopeland75,
You're welcome. Of course, I'm sure it feels somewhat different for everyone, but hopefully my impressions will relieve some anxieties -- just knowing it doesn't hurt or knock you down or anything! I was just so scared when it happened because I knew it would mean I'd have to be back in ICU. My story is a little strange, I guess. Like you (?), I had never had any trouble with my heart before (or any other health issues). At 47, I just dropped down to the kitchen floor one night while cleaning up after dinner. My 16-year-old son did CPR until the medics arrived (about 9 minutes because it was a very icy January night). I still can't quite get my mind around that scene and all that he must have gone through! I seemed to make a quick recovery -- even tried to sit up in the medic unit and ripped my airway out, proceeding to tell the medics how I didn't need to be there!
After a week in our local hospital they were going to send me home. Then my heart stopped again and continued to stop every few minutes. They had to keep shocking me -- hundreds of times -- to get me back. I was aware of some of that, could sometimes feel myself going into the bad cycle, knew it was going to happen, and a few times felt pain from the shocks. That DOES hurt, but I don't think you are aware of it happening or remember it unless you have hundreds of times, like I did. In desperation they decided to send me to the University of Washington Medical Center in Seattle (we live nearby) to be put on the heart transplant list. Yikes! At the UW, however, they said I wouldn't be able to get a transplant because my heart was "perfectly healthy." They weren't going to remove a healthy heart. Makes sense. They just could not figure out what was going on, what had sent my heart into this terrible cycle. Well, long story (5 more weeks in ICU) short -- they tried two ablation procedures and hoped they worked. For the first one I was too sedated for it to work. The second one took 9 hours (you are awake for this, while they put tiny "scars" on your heart to try to reroute the electrical charges that are going the wrong way).
So -- all of this to say -- that after I went home I was very sad and scared to have the ICD fire and send me back to the hospital for another ablation. But, it did not hurt. I remember only the "sound wave impact feeling" within my chest and a noise. It woke me up and I knew what it was right away. I was very anxious as I dressed to go to the ER, because I thought it might start going off every few minutes!
The third ablation worked, thanks to the extremely talented, persistent, and dedicated electrocardiologist I have at the UW. And I have been fine. It has been almost two years since my initial SAC. I am now off all medication (steroids, amniodorone, coreg, etc. etc. etc. -- given to me only because they didn't know what was causing the problem) and back to my previous activities, including working with elementary age special needs kids. They never discovered the reason for the initial SCA, nor why the cycle continued so dramatically to keep stopping my heart over and over. Miraculously, I suffered no brain deficits, no heart damage, no lasting effects of any kind, other than having choppy memories of my hospital stay (from the drugs they had to give me to keep me stable). This is probably more than you needed to know, but it might give you some idea of my perspective on the ICD. To me the ICD is a blessing that assures me I can go to sleep at night without worry. My husband can let me to out into the world and not worry. My son and daughter can relax (although they still call out "Mom?" if they hear a crash in the kitchen). It has all been a very strange, scary, amazing, miracle-filled journey.
Happy New Year to you and your family!
Johnie

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