Trying to Cope

Hi everyone. I'm 34 and I just got a defib implant on August 8th. I had been diagnosed with SVT for the past 13 years - but the past couple of months it turned into v-tach and atrial fib. HR would top out at 240 or so. My dr discovered it when he did an event monitor after i told him my symptoms - tunnel vision, blacking out. He admitted me immediately into the ICU to run more tests.Two days later, I had the defib.
The problem is I hate it. I know - it could and probably will save my life. The doctors told me in no uncertain terms what was happening to me. I hate being dependant on a machine. I don't know who to really talk to - everyone around me keeps saying 'just be thankful'. That's not making it any better.
Does the hate - or fear - ever go away? Do you ever get to feeling normal again?
If anyone has felt this way and can offer any advise, I would really appreciate it.

Thanks
kc

11 Comments

Feeling Normal

by SMITTY - 2008-09-22 10:09:03


Hello KC,

"Do you ever get to feeling normal again?" You will feel normal when you accept the fact that you needed something to help you continue to live. To me having a pacemaker is no different than a person with a knee or hip replacement. My body needed a manmade device to help things along. The fact that my pacemaker helps my heart makes no difference.

"Does the hate - or fear - ever go away?" There is no need for the fear and only you can control that. The hate will go away when you decide to quit hating something that has only one purpose - save your life.

I saw something the other day that put pacemakers and defibrillators in proper perspective. It pointed out that I now simply have a very important part of an emergency room implanted in my body. The only difference by having the device implanted in my body makes is that if needed I don't have to get myself, or more likely, have someone get me to an ER for the assist my little electronic buddy will provide.

You might try thinking of the relief that defibrillator gives your family and friends by knowing that there is a lot less chance of finding you one day and discover that you are no not going to respond when they call your name.

Good luck,

Smitty

give it time

by Tracey_E - 2008-09-22 10:09:19

It takes time to get used to everything! It takes 4-6 weeks to heal physically. It can be anywhere from a few weeks to a year to get to feeling normal again mentally. You WILL get to feeling normal again, we all do. Don't beat yourself up that it hasn't happened overnight.

Fear... the time to be afraid was before you got it, you are much safer now that you have it.

"I hate it" ... If you can, wipe those words out of your vocabulary. You don't have to love it and be grateful to have it (tho hopefully you will reach that point eventually!) but you'll never reach acceptance as long as you think like that. Yes, you are somewhat dependent on a machine, but remind yourself that that machine works much more efficiently than your heart.

I was 27 when I got my first pm. Read through some of the posts here and see how many of us are out here, and how well we are doing and how normal our lives are. Take a look in the member gallery pictures- we look just like everyone else!

Feel free to vent here whenever you need to. We've all been there.

I can relate

by Carol - 2008-09-22 11:09:11

I'm coming up on my 1 year anniversary of having a PM placed and I think I can relate to what you're feeling right now. I too hated the following....feeling "different" and some how "inferior" to all my same-age friends who don't depend on anything other than their own natural hearts to beat in sync and regular. It felt so "creepy" to know I have wires screwed into my heart and at first I was scared of every odd beat or flutter. I didn't like having to think about electromagnetic fields, etc., etc. But, you know, I managed to get through all of those feelings eventually just as I bet you will. I do feel pretty normal now and often actually forget I even have one. that's not to say I'm glad I had to have a PM (I'd really rather not) ...BUT when I think of how tough it would be to get around without it ( I was in and out of 2nd degree heart block and very symptomatic) well, then I thank my lucky stars for this little titanium wonder....and well I guess I really am glad I have it afterall because my heart would have gone on the blink anyway. So, just hang in there, accept your feelings right now as you cope with all these new changes, and I think you too will arrive at a place where you're more comfortable and accepting of your health issues. Good luck and as previously stated use this site to vent and ask questions...we've all been there to some degree. Take good care, Carol

it gets better

by dual pacer - 2008-09-22 11:09:58

Hi KC, this is all new to you. It happened so fast. It takes a while for you and your body to get used to having something foreign in you. have patience with it. before you know it like anything else it becomes part of you. just like other thing we need. Once it plants itself it is just another part that makes you tick. No one know unless you tell them. dont look at it as a bad thing. just part of what cards you are dealt and deal with it. take care

Time will ease your fear.

by Katielou - 2008-09-23 02:09:35

I do understand exactly how you are feeling. I have had a defib/pm for 4 years now and believe me it was hard in the beginning. I felt ugly, angry, frightened and worst of all I felt like a freak! I didn't want this lump of metal in my body and at one time considered having it removed.

I remember finding this site at that time and posting a message begging for help. I didn't know anyone with a defib and had never heard of this thing I suddenly had to live with. It seemed to have taken over my life and I didn't want to go there - I wanted to be normal me again. So this is how it went on for a while. I wasn't allowed to drive for a year and that really was the hardest thing to accept.
I think the knowledge that the ICD will save your life will gradually become acceptable to you and you will start to think about it less and less. Of course you will never forget it completely but it really does get easier. For me, knowing that the ICD would probably fire sometime was quite daunting as you just don't know when it's coming. I was frightened to go out for a walk or shopping etc as I didn't want it to happen where I might be seen. Well, the first shock happened and in a way I was glad because I knew it worked and I then knew what a shock was like. It happened twice and since then I've been fine and I'm so glad I have the ICD now - it is my best friend.. TIme has made me so confident that I really don't let it rule my life, I carry on as I always used to. I now drive, fly, work and am totally happy with it. Of course I'd rather not have it but then I wouldn't be here! I wonder if an ICD needs a slightly different mind-set to come to terms with compared to a pm simply because of the shock therapy and the worry about it.

I promise you, you will be fine and the fear will disappear in time. Your confidence will return and your life will get back to normal - honestly.

Take care and hang in there. Always here if you want to talk.

Lesley

feel same way

by rayan - 2008-09-23 04:09:45

I had two implants within 3 mos. the 1st was on june 10th, the second one on august 28th. I still feel very tired, started to walk yesterday went a mile. Today the same. Tomorrow am going back to work wonder if it is too soon. Am nervous about going. Hope my device ICD/PM don't go off. Am worried, so say prayers for me,
Also is it common to be so darn tired. Hope everything goes well tomorrow. Wil l post to let you all know.

Feel the same

by tom1991 - 2008-09-23 06:09:25

I'm 17years old and had my pacemaker fitted 4weeks ago thursday, for the first 2-3weeks i was scared to do anything atal, every feeling i got i was worried about and i become anxious about everything.
I have got much better and things are improving, of course its only been a month now and i don't feel back to how i was, it still hasn't sunk in what i have had done because for all of us who have been through this it is a massive thing to have had done..
The best thing is to look back and see the improvements you've made, its all about time and you don't want to push yourself too much because i did and then the anxiety kicked in and your confidence goes back down to zilch, I think this is all a mind over matter thing, even though your safe for some reason your mind tells you your not.. Its all a matter of time and reading the other posts on here has made me feel alot better, when i first had it done i felt 'different' but there is so many other people who are the same and i thought i was young to have it but i have found out people much younger than me have had it too.
I don't know how long its going to be till i'm back to myself. But we all need to boost our confidence back up, it is a challenge and its a scary one but if you believe in yourself enough you will recover quicker.
Its nice to have read everyone else's comments and to read how you feel, we all have felt the same and i do still now so your not alone and as we've seen everyone's got through it so so can we.
Get back to me any time as it is nice to talk to others in this healing process.
Tom

difib/pacemaker

by scotter - 2008-09-23 08:09:21

The difib saved my husbands life 3 weeks ago thats all I can say and I am grateful. Ok he is scared that it will fire again and so am I, infact I am getting paranoid about it. I wish you well. Take Care

I Know how you feel

by Megherbst - 2008-09-23 09:09:04

I'm 24 and I got a PM about a month ago and to be perfectly honest I'm still HATING it. And nothing is irking me more than when somebody says oh just be thankful.... or at some point it will become a part of me... haha good god no, a metal thing with wires screwed into my heart is not part of me. I know its keeping me alive and from passing out and hurting myself but that doesn't mean it's something I'm going to jump for joy over. I'm still having nightmares about the surgery b/c they couldn't get me sedated and didn't numb me enough before cutting. I'm just hoping that at some point I can will myself into accepting this. I just wanted to post that you're not the only one and I'm hoping at some point it gets better.

Just got a pm this month

by MillieNeon - 2008-09-23 10:09:35

and also had broken vertebrae. They fixed the vertebrae, but have been having muscle spasms, to can't stand or sit long. Today the doc will give me muscle relaxers, which should enable me to finally get around again.

But I was having trouble not connecting the pm to the being unable to sit or stand and feeling very scared about ever being normal. Generally I can meditate and get myself into a good attitude which I've done a lot this month. But I do understand how you feel.

Been reading this incredible book by a psychiatrist who talks about patients who heal and go on to live healthy lives and those who don't. I'll post some of his ideas here at some point perhaps, if people want. But a lot comes down to our own fears, envy of people who don't have the problems we have, inability to incorporate what has happened into our lives and still feel love and gratitude.

That sounds silly and new agey to a lot of folks I know. But this guy makes a lot of sense, and he's part of the medical community, not a swami. It's really helping me think things through and adapt.

Best of luck to you.

Thank you everyone

by grntygreyez - 2008-09-24 10:09:15

I was having a rough night that night. I really appreciate all the comments and support from everyone.
i guess that night i was very frustrated - scared of the test that i was supposed to have done today and it all piled up. Most days i can get through everything without it hitting me so hard.
I do see that i'm not alone anymore - there are people here that do feel and agonize the way i do. None of my friends or family has one so it's hard for them to relate to everything i'm feeling - and my children can't understand, of course.
Anyway, the doctor ended up having to cancel the test - so i have to reschedule it for a couple of weeks from now. I'm hoping i won't panic like i did this time.

You know you're wired when...

You have an excuse for gaining an extra ounce or two.

Member Quotes

I just want to share about the quality of life after my pacemaker, and hopefully increase awareness that lifestyles do not have to be drastically modified just because we are pacemaker recipients.