Ugh!!

My pacemaker surgery was on June 2, 2010. I can't stand this thing. I am having the hardest time coping with it. I am sure everybody senses some sort of anxiety over these. But I can't help but think I am struggling a little more than others. Am I alone in feeling like this? I am 32..there are so many reasons I hate this thing. The only person I have talked to my true feelings about is my cardiologist. I am very close to my family and even my boyfriend would be great to talk to, but they don't understand. How could you understand what it's like or what I am experiencing if you have never had a pacemaker? Just like I don't fully understand someone's emotions that has cancer..etc. My caridologist suggested I try a support group so here I am....

19 Comments

I understand

by Finn - 2010-07-12 02:07:13

Dear Ugh, i feel the same way, i had mine put in november of 2009, i think i am in my 30's but i'm really 49 which i thought is to young to deal with the rest of my life. Although less and less i wake up and say i don't want this anymore and ask the same questions to my wife, x wife, and sister, do you think i really needed this? They remind me of the events that lead me here, i had a slow heart beat30's and started fainting more often. Anyway i am not anxious anymore about it, it just keeps working and i forget its there 70% of the time, also it makes me different from others which is good. I actually went through airport security/metal detectors by mistake, i forgot i had it, of course i panicked a half hour later called st jude, they assured me i would be fine, i got on the plane, a little nervous but fine. I also have a remote monitoring system which keeps tabs on me, the people around us including the cardiologists don't quite understand that it is a big deal to us to have something inplanted in us attached to our heart, ahhh. I think it's great your getting your feelings out, it has worked for me, hang in it gets easier, Brendan

welcome heather

by jessie - 2010-07-12 02:07:34

you know what i joined this club four years ago last august. it was a few days after the implantation and i can tell you i was feeling alone and scared even with close family around. i was on this sight a great deal. i met many wonderful people. i vented and they listened. now it is my job to listen. keep coming back.it really helps. jessie

welcome!

by Tracey_E - 2010-07-12 02:07:44

We're glad you found us! You are not alone at all. Many find that the emotional healing is harder than the physical, it's perfectly normal. As you heal and feel better, acceptance should come. Chat with us, ask your questions, vent, whatever you need. We've all been there.

Another thing that can help is to have a good understanding about how it works. Did your dr give you a good explanation of why you need it and how the pm works? For me, I can handle anything if I can understand it.

Don't be afraid to be open with your family. If one of them was hurting, would you be annoyed if they kept it to themselves rather than sharing with you?

If it helps you see the light at the end of the tunnel, I got my first pm at 27. I'm 43 now, I had two kids after I got the pm, I own a business, I do a lot of volunteer work, I'm healthy and active. Most of my vacations are either hiking or skiing. Most people don't even know I have it, they just see another busy mom trying to juggle too much. It's not that I keep it a secret, but it doesn't hold me back at all so it just doesn't come up in conversation. I honestly do not give it a thought most of the time.

Let us know how we can help you! If you're anything like me, your dr doesn't have any other young patients and you've probably never met anyone else young and otherwise healthy who has a pm. I love having a place to hang out where I'm one of the old folks and we're all bionic.

hey cheer up

by kidd - 2010-07-12 04:07:24

i was 19 when the doctor said i have complete heart block .and need a permanent pacemaker. I thought was very healthy. i never faint or had any chest pain. The news was so shocking. I almost lose hope after the implantation. thinking about having a machine inside me and have to go through the surgery every 6 years. .. but whatever it is we must move on. live our life to the fullest. we should never give up. i have been given a second chance to live. Being healthy is such a precious thing. be grateful.



p/s : im 20. so it was last year..lol

Why

by SMITTY - 2010-07-12 04:07:29


Hello Heather,

I'm puzzled. Why do dislike your pacemaker so intensely? Would you feel the same about glasses if you wore them because you needed help seeing some things? That pacemaker is no different from glasses, it is there just to help a part of your body that needs some assistance. Well I guess it is a little different from glasses in that the pacemaker is permanently attached to your body but that is not all bad because unlike glasses you can't misplace or lose it.

You mention your age being 32. If you think you are too young to have a pacemaker, well I don't think age should ever be a consideration. That is unless you want to consider the fact that with the pacemaker you will probably live to be a senior citizen where as without it you may not make middle-age.

I'm guessing your pacemaker is an on demand PM, which means it keeps your heart beat from going below some number the doctor programmed in to your PM. But it only helps out when your heart's natural pacemaker fails to keep it from going below that magic number. Which means help from the manmade PM is probably not very often. All other times the pacemaker is just along for the ride.

If my guess is correct I wonder if you are like so many of us when we got our PM. You are under the impression that your pacemaker is responsible for making your heart beat every minute of every day, which is not so. As mentioned above, it only helps when needed.

Don't hate, or dislike you pacemaker, ignore it. If for some reason you can feel your pacemaker for whatever reason, that is not the fault of the doctor and not pacemaker. A pacemaker will be go about doing its job as silently as your heart's natural pacemaker does. So if you feel the manmade job, complain to the doctor until he makes it right.

But, that's enough from me, if you are even still reading. I could sit here and write a book on why a pacemaker is not to be disliked as it would do no good. The reason you feel the way you do is located between your ears and only you can reconcile that feeling or reason. I do hope you can soon accept the fact that the pacemaker is there only for your own good, nothing else.

I wish you the best,

Smitty

ugh

by LS - 2010-07-12 05:07:34

I must admit, I had similar feelings. I too hated the damn thing. It made me feel weird even to put my hand over it when I was washing in the shower. Not sure "WHY" I felt that way, but I did.
The only thing I can say is after going on 6 months with the little bugger, I feel 100% better about it!
Read here daily. Knowledge is power & I have gleaned so much information from this site.
Just to know you aren't alone in how you are feeling makes a world of difference!
Grow to love your little PM that is doing it's job to keep you healthy.
Welcome to our club.
Liz

Dear Ugh...

by HT - 2010-07-12 05:07:48

I just had a pacemaker implanted on July 2, 2010 and am new to the group. My only comment to you would be don't invest your energy into hating something that may keep you alive. You don't have to love it...or hate it....you can be indifferent to it and just accept it and concentrate on living and enjoying life. I'm 65 years old, and survived 5 prior heart attacks which resulted in a heart rate of 30 bpm, falling down everytime I got out of a chair, and not being able to breath while trying to play with my grandkids. Since the pacemaker inplant I'm 100% better. Do I enjoy sleeping with what feels like a rock in my chest....no....but it's a small price to pay for the benefits it's providing me. I pray that you will soon get tired of hating yours and invest your energy into living life. HT

EVERY DAY IS ANOTHER GIFT

by pete - 2010-07-12 05:07:49

Every day is precious . You wake up to a day that will be different form any other. You can hear and see and taste and touch to experience the wonders of this beautiful planet. You have been given the gift of life with your little friend. Be joyful and grateful. Most of us surely are. Cheers Peter

cruz

by LS - 2010-07-12 08:07:15

I'm with you. I've just sucked it up & know it's there for a damn good reason.
Why dwell on not liking it?
It's helping us live.
For that I'm truly grateful. I have a wonderful family & 5 grandkids that I want to be around for many more years for.
Liz

Same as LS

by cruz - 2010-07-12 08:07:46

It's not what anyone wants to hear, but I felt the same way. I still don't want to put my hand on it when I shower. I have pm/defib so it's saving my life and without it, I might not be showering in the mornings at all, if you know what I mean. It has given me fits trying to learn again how to sleep with this thing attached inside my chest and I know that my family is afraid, which is what hurts the worst. I've had the pm/defib which I'm 100% dependent on, for about 5 months and it wasn't a great realization, because I still have the "I hate..." days, but I'm come to realize that "it is what it is" and that's it. I do feel like every day is precious and I've been given a chance to appreciate it. I worked with a woman who just didn't wake up one morning. She didn't get diagnosed or treated before it killed her so I just feel blessed that they found what was wrong with me. There are going to be days that you still hate it and you can come here and vent or whine or rant with those of us who have felt that way too. Those days get fewer and further between them too.

ugh

by keveri - 2010-07-13 02:07:52

you are not alone. i had pm april 2010 and i have learned so much from this site. in the beginning i was envious of the feedback of others who were doing so well. i had a tough time early on.
i do believe when the heart is surgically entered part of our soul or our being leaves and we try so desperately to get it back. i had the same thing happen when i had my mitral valve replaced, i was depressed with no prior history. but i did make a faster recovery. post op after the pm was even harder. i am not making the speedy recovery that i hoped for. i kept reading that some people come out of the surgery and feel great, i did not.
i am just starting to feel better. i have been tweaked 4 times and i think one more should do it.
here in nj the humidity and heat limit any activity, inside and outside my home. i was i great shape prior to pm and feel it is taking me so long to rally. for the first time tonight i took a long walk and i feel like i have my MO but not the JO (MOJO). but there is finally some light at the end of this tunnel which i did not think would come.i feel there are good changes now but i did not think i would experience them at all.
my pm was very close to the skin as many complain. just recently the pm has settled down into the chest area more, the leads are not so pronounced. i thought as you did, i did not like a machine keeping me alive until i met a 90 year old man who said hi tech like this was not available to people years ago and i should be happy to be healthy enough to have them replace faulty parts as i would have died years ago.it is a very high tech life today.
you are also experiencing fear of the unknown, which comes in many different ways, sleeplessness, panic attacks, depression. they will slowly disappear, when you accept the pm as part of your life and lifestyle. be grateful we have this opportunity. thinking of you. jan

They have said it all

by rvrs7081 - 2010-07-13 03:07:32

All I can do now is wish you well and welcome to the club.
It may be time to make friends with your device. I call mine angel, as I feel she saved my life. And there is so much more I have to do. I made a list as i waited for the surgery. Places to go, things to do and books to write. ( ihave written 5 that were published) I plan on two more.
You will always be in our hearts. Ann

It's been 4 1/2 months for me.

by heartu - 2010-07-13 03:07:56

It great to read all of the wonderful responses you received. I was truly impressed by Leslie who has had hers for 43 years. I guess my plan to live to at least 100 is plausible now (I am 53 and will be 54 in less than 2 months....ugh! for that part.).

You're right no one understands unless they have walked in your shoes. My husband thought I should have felt like the bionic woman immediately after receiving my pm. I made him go on this forum and read what others had to say. I kept a journal of my feelings and thoughts religiously and only write in there occasionally now. At 4 1/2 months I really don't think about my pm much. I just live my life. Luckily, I have no medical or physical problems so I continue to eat right and exercise and do pretty much what I did before.

When it comes down to it, I feel so blessed to be here and life has a new meaning to me. I do not take a day for granted anymore and funny but I find that I do not get angry the way I used to. What's the point of being angry. Life is to short to carry grudges. I just want to be happy. Nothing more, nothing less.

So very thankful!

by EverReady - 2010-07-13 04:07:21

Hi Heather,
I have a pacemaker and had my first implant 43 years ago. At the time I was 13yrs old. I decided early on that people I met would know me for the person I was, not that I had a pacemaker. It was usually YEARS before I even mentioned I had a "battery" and by that time it was a very low keyed statement and response. I have been blessed with 2 children, 2 adopted children, 3 step children, a wonderful husband and now grandchildren. I have owned two business, been on mission trips and have really done anything I have wanted. I know I would not have been alive today, had it not been for awesome parents, skilled doctors and God watching over me always. And I am 100 per cent dependant on my pacemaker. I take no medication, rarely even think about having a pacemaker, have not had any problems, recalls, complications etc. I am very blessed and thankful every day. I had parents who always talked to me about what I COULD do, not what I couldn't do.
Give yourself some time, Heather. The advances made in this area (pacemakers) have been amazing, and fascinating and a wonderful journey. Embrace this new life style and get the most out of each moment of every day and then you can look back without regret and look forward with confidence. I will keep you in my prayers.
Life will only get better.
Leslie

You'll get there

by Genie - 2010-07-13 05:07:52

Hi Heather,

Just wanted to say welcome, and echo what everyone else has said. I got my PM in March. I'm 31. For the first 2 months, I felt awful. I had terrible palpitations, ended up on Beta blockers, and felt completely overwhelmed by the surgery. I spent a lot of time on here, where wonderful people stopped me from going crazy.

Now I feel so much better. I hardly think about the PM, and physically I am no longer tired or dizzy. You've been through a lot, and it's going to take some time for you to heal emotionally. It's ok to feel down, and we'll be here to make you feel better. It's ok to cry, to worry, and to feel stressed - just tell us, and we'll help you make sense of things. We really understand.

Try and remember that you are now better, and safer, than you have ever been. Your PM isn't a problem, it's the solution to a problem you no longer have. Now you're going to have a great life. Everyday it's going to improve, and before you know it you're going to feel like your old self - only better!

love Genie xxxxx

wow such great posts:)

by breezy - 2010-07-14 01:07:37

I can relate to all - I have had my little friend here for
8 months - I still have some panic attacks once in awhile but I have learned to listen to my body and know what I should be paying attention to - I thank God every nite and every morning for be able to get up and move around without feeling crappy - I smile much more and don't let the little things get to me:)
Oh I still have the PVC'S and I try and not let my anxiety kick in cause that just makes it worse..so hang in there - and it all gets better as you go along:)
take care and blessings to you and all :)
breezy

I lv this site and come and read every day :)

Joyfully Overwhelmed!

by Heather1234 - 2010-07-15 06:07:40

I truly am beside myself from all the comments to my post. I thought I would write something down and maybe get one person to respond. But, that was not the case and I am so grateful. It was so nice to hear from everybody. The stories and feelings and well wishes were exactly what I was looking for. I do believe that people who don't have PM don't realize what it is like and it's hard to explain to people. What a blessing to be able to talk to people who are dealing with the same things. My PM only paces if I go below a certain heart rate and the last time it was checked it was pacing 67% of the time for me.

Don't get me wrong, I am in awe and gracious over the technology that is helping keep me alive into old age. But, I struggle and I hope that as each day passes, it will be "just along for the ride" as so well put above, and I won't pay much attention to it. Thank you again for everything and all the words of encouragement. You all had me in tears at work!! :)

Welcome

by at120uk - 2010-07-16 09:07:09

Hi, I felt the very same things as you are feeling now. I hated my PM, I could feel the wires in the veins when I moved or bend forward, wanted to rip it out my chest, I even went back to the hospital and demanded they take it out. (how ungrateful am I...)
I was very low, even had moments were I was in tears. I felt all alone, and having the lump didn`t help. I wanted to be “normal” again.

I was 35 when I had my 1st, laying in hospital with men about 70 -90, I was thinking ...I shouldn`t be in here.
I`m now 51 and have just had my 3rd PM put in, and can`t drive for a month which I’m very angry about. The wound was glued and is fine now, but the lump seems a bit bigger than the last 2, but never mind, maybe it’s the swelling.

Get your cardiologist to explain how it all works, what it’s in for, get to understand it better.
As for your feelings, a cardiologist can`t help you with that, as knowledgeable, skilful and talented as they are...only someone who has one will know how you feel, and that’s where this wonderful sites in.

Seventeen Months Later

by NLayne - 2010-08-05 09:08:46

Mine still bothers me. It is still hard to sleep with. When my grandchildren sits in my lap and layes their head on my PM site, when someone accidently bumps into me, etc, it takes my breath away. The site feels as if there are needles polking from the inside out. I have read so many articles about how people continue about their regular activities and have no problem. I guess there are some of us that takes a lot longer to heal. Befor my PM, I could out run my 14 year old granddaughter. Now I cant run at all. I have attempted it, and everytime fall flat on my face. Seems like my mind is running faster than my legs. I am now disabled. I am 52 years old. Up until the pacemaker, I felt as if I were 30. Now I am afraid of doing something and causing the PM to come throung my skin. I have found that the majority of those with PMs do better than great, but a few of us, may take a little longer.

You know you're wired when...

Your signature looks like an EKG.

Member Quotes

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