i'm always scared

hi i still have a really hard time accepting that i have a pacemaker/defib in me and it's been 3 years now. in 2005 when i got it, i was shocked 8 times while staying in the hospital. turned out in was "unnecessary" but i'm still scared all the time. no matter what i do, it's always in the back of my mind about getting shocked again. i don't think i'm depressed or anything but i still cry about it, i still feel like it sucks to have this in me & i'm 30 years old. i read about how people say they are grateful to have something like this in them & i feel like i'm never gonna be one of those people. don't get me wrong i'm doing really good and i'm sooo happy about that and i can pretty much lead a normal life. yeah i can't do certain things and i have to be careful but that's ok. sometimes i have a hard time with that but i get over it. i just feel like i never really truly just enjoy things anymore because i'm always thinking about getting shocked in the back of my mind. i know this probably doesn't make sense because i'm just writing what i'm thinking and that can be confusing sometimes=) i just want to know how to stop being so scared all the time. thank you for listening to a confusing person.........

6 Comments

Ok to be a little scared...

by Swedeheart - 2008-05-31 01:05:31

Hello,

Although I do not have an ICD, I do have a pacemaker. It is absolutely normal to feel frightened about this piece of technology that is now controlling part of our lives. For me that is part of my big "fear" is giving up the control from a "natural" part of my heart to this piece of equipment. While I can't directly relate to being afraid of being shocked, I am constantly wondering if my PM is working properly and what it is doing to me!

I seem to be one of those "worry types" and can't get it all out of my head either. I am just short of 100 days since implant ~ so I hope it will continue to improve. I guess initially I thought this pacemaker thing would "fix" my problems and I would be "good as new".... that was pretty unrealistic. I still feel "funky" sometimes and wonder what my heart is doing.

My family doctor suggested anti-depressant meds, and he explained to me that one doesn't have to think they are "depressed" ~ the meds do a lot more. I decided to give it a try without them but if it doesn't improve I may see if they help. About 60% of the time I feel fairly okay, but the rest of the time I have mild symptoms that bug me.

If you both feel really frightened, talk to others about it (here is a good start!) and talk to your doctors! Press them on the issue and see what you can do to alleviate your concerns. Feeling scared leads to stress and stress is hard on our hearts. It can be a vicious circle.

I find reading the posts here helpful knowing I am not alone! We can support each other many times, but it may not always be enough. The more I learn about my condition and my pacemaker and what it can and cannot do the more realistic approach I can give it. I wish I didn't have mine either, but I'd rather have it and not go through the really awful symptoms I was having pre-PM.... as a senior citizen for me it is a kind of slap alongside the head to wake up and make each day count! I am just not getting any younger... so I hate to give up my time thinking and worrying about it all.

On the bright side I just returned from a week's vacation where we met with a lot of good friends and went camping. It was delightful and I was so thankful I was able to go. The last one we had scheduled I couldn't go because of my health. So... it made me happy in some ways to have my little PM be there and take care of me.

Hang in there. We are all in the same boat together and we all need to make the best of our situations the best we can. I know we will all have ups and downs. Life is that way.

Swedeheart



i am scared silly

by curly - 2008-05-31 04:05:58

i know how you feel i mhave had my icd since sept.07 and i was shocked twice in april. i spent a week in the hospital on amiodarone. i am taking one a day. i think about the incident alotand i am scared. i sometimes take a zanox and it calms me down. if my anxiety does get worse i will seek professional help. i keep saying to myself that the meds are working and nothing is going to happen. if you need help seek out counselingand if you need meds ask for them. iknow you can beat this fear just keep busy so you don't have time to think about your sitiation. surrond yourself with freinds and family as much as possible. good luck and let me know how you make yours truly, curly

I am scared too

by brugada mom - 2008-05-31 10:05:05

Hi and good morning. I was diagnosed with Brugada syndrome and received an ICD on Feb 29. I am in the same boat. I am physically recovering but mentally i am a mess. I will be 40 in October and have a great family. I am scared of everything i do and that it will send me into VF and getting shocked. I lost 50 pounds last year and competed in triathlons and road races. I haven't been working out too much and am petrified to get back to swimming. I am a nurse who works in the Cath Lab and everyone tells me i should be grateful that i am alive and now protected with my ICD. I am angry and scared by it all. Please can anyone give mnm and I some advice to help us cope. I would be very thankful to hear from the group. Is there anyone in Connecticut, female and around 40? I would love to meet someone local.

thanks for reading.

Jodi

facing mortality

by YellowMonkee - 2008-05-31 11:05:09

I received my ICD when I was 23. I am now 25. The fear has never gone away. It has eased, but it is still there. I mean, when you realize how close to death you were, death just seems that much closer all the time. Not many people at my age has had to face mortality. It is not easy to cope. After two years I have finally swallowed my pride and went to see a counselor. It was the best move I ever made. I still see her, but my appointments are now a month apart and the panic attacks are so mild I can put a stop to them without freaking out. Many people get relief by taking medication. I tried that first but the side affects were were too bad to deal with. Counseling had no bad side affects and did a world of good. I hope this helps.

YM

sometimes...

by tpod - 2008-05-31 12:05:43

Jodi, first off, hi. i'm from connecticut, but i don't live there anymore. we should chat, though! when i come home for visits, we can get together. Connecticut is tiny, and i don't mind driving around. whee! (i'm from newington, originally.)

now. to both of you. have either of you been to counseling? i hated the idea, myself, but i went anyway, both before and after my ICD placement. for me, the ICD has been a huge joy -- yes, i can sometimes feel my heart being shocked back to proper working order (weirdly, i feel the buzzing in my hands and feet, and once in a while in my thigh. weird weird weird.) but in my head (an attitude adjustment, i assure you) i tell myself 'take that, stupid slowpoke heart! bwahaha! I WIN!' and i go on with life. and there's a reason for that.

without this ICD i could die. easily. probably quickly. and probably painfully. it's already uncomfortable when i can't slow the heart rate down, or i can't force myself out of A-Fib, but can you imagine if we had to go through a heartrate of less than 30 for..however long it takes for your system to say 'enough. shut it down.' like gordon freakin' ramsay on hell's kitchen!? (hey, look, run on sentence.)

anyway. in counseling, i was able to let out some of my fears, and some of my anger. i'm THIRTY. this should NOT be happening to me, damnit. and it was awesome. and you know, when i'd had enough of the counseling (which i actually hated immensely, despite how much it helped) and when the lcsw had begun digging further into my sordid past than i was willing to go, you know what i did?

i stopped going.

SERIOUSLY consider seeing someone. and jodi, depending on where you are in ct, i know some GREAT people in the new london area. used to work for them, and two of the providers in the practice (or at least, used to be in the practice when i worked there) are just two of my favorite people in the world. dr. willie coleman is the man. seriously. and if she's still around, eileen danaher, too. (last i heard, she's an MSW) they rule so much.

i'm sorry you're both going through such a love hate thing. please remember - we're all happy you're here, and don't want to see you suffer.

good luck, guys.

Counseling

by ElectricFrank - 2008-06-01 01:06:04

I agree with the suggestions about counseling. Fear isn't just something that makes us uncomfortable, it can lead to a lot of the symptoms reported in this forum. Fear and panic can cause PVC's, tachycardia, shortness of breath, chest pain... One of the risks of these symptoms is that they lead to unnecessary procedures and meds because the medical folks don't understand neuropsychology so treat everything as a physical defect.

So a few sessions with a good counselor can be very helpful. Even finding out that others have been living with the same symptoms may be enough. That's where this forum is so helpful.

frank

You know you're wired when...

You play MP3 files on your pacer.

Member Quotes

Hi, I am 47 and have had a pacemaker for 7 months and I’m doing great with it.