Support Group

My name is Brendaa and I am 40 years old. I had a pacemaker put in 8 weeks ago and am still in shock. My severe bradycardia and fibrosis came out of nowhere and I am having a hard time accepting my limitations. Because of my age, I was given a PM with a large battery and I am constanly experiencing discomfort. I spend most of my days crying and cannot find a support group in my area. I feel very much alone.

17 Comments

You're not alone!

by ela-girl - 2007-09-27 04:09:18

Hi, Brenda!

If it weren't for this pacemaker club, I would have gone crazy when I first got my pacer a year ago. I, too, was looking for a support group in my area, and there just aren't any. As I've heard it said on this forum many times, this club has some of the best people you'll never meet! Pacemaker surgery is considered minor even though it's a major life upset for most of us. And no one ever tells you what to expect. So, post often and ask questions and we'll be here for you!

One reason for my emergency pm surgery was severe bradycardia. So, I can relate to that! Your pm should make you feel like a new person...eventually. It does take some time and getting used to. Unfortunately, it's hard to have patience when you want to feel 'normal' again. I was wondering what type of pacemaker you have? And what reasoning was given to you that because of your age you got a larger battery? This sounds hokey to me. I am 30 so...

Keep in touch! Happier pacing-
ela-girl

NotAlone

by boatman50 - 2007-09-27 04:09:20

Well Nice Girl you are not alone. The people in this club are great and can answer any question, give you sound advice and just lend an ear to listen. I have had my pm now for 15 months. Yes it came as quite a shock and still I can't get over the fact that I have one but without it I would not be able to help you out! Even now I get a twinge now and then, but time has really helped heal and I hardly think about it now.
Take care and post all your thoughts and questions,
Boatman

It just takes some time & we're here for you!

by lindalouwho54 - 2007-09-27 04:09:30

Brenda -- It sometimes takes a while before your body gets use to the pacemaker. Mine, too, is fairly large -- a CRT-D device. And I'm a fairly petite person; not much room there to put that PM in! I remember that the first few weeks after my implant (in Feb 06) were particular tough. I thought I'd bounce right back, but I didn't. I used strong pain killers for about three weeks straight. After that, it still seemed to take a while to get use to the pacemaker. It seemed to flop when I'd roll to my side in bed at night, that kind of annoying thing. But, little by little, it became a part of my body. The pain went away. My health slowly improved. By the three month point, I felt so-o-o-o much better. Now, I hardly ever think about it. And when I do, it is with fondness, because I know that little hummer is what will keep me alive. I'd say give it time. You'll be feeling better than ever before you know it!!!

Thanks

by NICEGIRL7 - 2007-09-27 04:09:34

Thank you all very much for the encouragement. I live in Yonkers, NY and according to the local hospitals and the American Heart Association there are no support groups in my area.

Brenda

by bjmcpherren - 2007-09-27 04:09:38

I am 47, I have had a pacemaker for 30 years. I had lots of limitations the first 18 years of my life, but even with all the ups and downs with the pacemaker my life has greatly improved. I have very limited limitations now, hardly any worth speaking of. I had never been able to particpate in physical activities as a child/teen but in my 30's I ran a couple 3.5 mile fun runs, first time I ran ever! I understand it is difficult, especially if you have gone so long without limitations. But try to comfort yourself, get lots of support, get to know your pacemaker and then get out there and enjoy your life. I just had a lead replacement about 4 weeks ago. Had a rough recovery but I am getting back on my feet. Started doing light aerobics, hope to progress to weight lifting over the course of the next month. My future goal is to get back into running - my son wants to do the fun run with me! Hang in there!

Bonnie

baby

by jessie - 2007-09-27 04:09:39

oh dear you are still a baby. you will soon be okay. it takes awhile about 3-4 months. the crying is normal. it is earthshattering and life changing but you should be okay in time to do most things. don't let it get you down. if you are worrier you can go on an antidepressant for awhile. the didcomfort will go nicegirl 7this site is the best support you will ever get. everyone here has the same issue a pacemaker or defibb or both. so settle down. get to know a few and you will be okay eventually. it will take as long as it takes, take care maureen

support

by luckyloo - 2007-09-27 04:09:45

dear brenda,

i am 44 yrs. old with a defibrillator/pacer combo. please know you aren't alone. i actually have 2 devices...the other being a peripheral nerve stimulator. it is under my right collarbone. it's just like a pacemaker except the leads are sewn into nerves. my defib is under my left collarbone. the PNS is under the muscle which hurts a lot and i want the dr.'s to move it because the pain is so bad. it's been in 9 months. my defib is under the skin and doesn't give me any trouble. half the time i don't even know it's there.

if you call your local teaching hospital they should have a support group...if not ask your EP. what state do you live in?

i still find it hard after 4 years to accept that this is my life now. you actually need to go through a grievance period. i also have become closer to God through all of this. when faced with your own mortality it sure opens your eyes to what is really important in life.

God bless,
luckyloo

ela-girl

by NICEGIRL7 - 2007-09-27 05:09:16

I was given a Guidant PM 2 days before they were taken over by Boston Scientific. The excuse the representative gave me for the larger battery was so that it would last longer before repalcement. Sounded hokey to me as well but you know how the salesman are.

Support

by Vicki - 2007-09-27 05:09:24

Hi Brenda,
I got my PM on July 18th of this year. Bradycardia caused by complete heart block. So, I am a little over 2 months with mine. Still getting used to it but it's getting easier. I'm 58 and the St. Jude Rep was in the OR and was introduced to me when they wheeled me in. I asked if I could see the PM they were going to put in me. He brought something out to show me and explained that it was a smaller unit but they could put in a bigger one with a longer battery life. I opted for the bigger one. Not sure if I made the right decision or not but it's in and that's that. You will get lots of support here. Great group of people. I am so thankful I found this site.
Vicki

HANG IN THERE

by rancho60 - 2007-09-27 05:09:33

Hi Brenda --- I know how you feel. I just had a pacemaker installed 2.5 weeks ago. I just ran accross this wonderful web site with these very knowledgable people. They have been a blessing to me. We are our own worst enemy - that is so easy to say but hard to relate to. I am still getting moments of what I consider anxiety - thinking that something bad is about to happen to me. I litteraly made a basket case out of my poor husband -- and my primary care doctor probably thinks I am a looney case by now. I just started back to work yesterday, boy was that hard. I was causious all day. Today a little better! We are ALIVE! how wonderful is modern medicine. Hand in there -- time will pass and you will be better than before.

Gods' blessings to you

Renee

Hang in there

by randrews - 2007-09-27 09:09:04

Man, I can so relate to what your saying. After 6 months it is so much better but it does take time. Find people to talk with, make friends here and send messages to them. One thing is for sure, you arent alone. Just look at all the postings you have.
After getting my pm I did go on an antidepressant for my panic attacks and depression. I'm working on getting off of it now. I guess the bottom line for me was that pm made me feel that my body was fragile and not invincable. It always was fragile and never was invincable, I just wasn't aware of it before.
Find the laughter if you can, it's still there,
God bless you,
Rusty

I understand....

by meema - 2007-09-28 01:09:03

I am 58 years old and just had my PM implant last Thursday, a week ago today and my 38th wedding anniversary. I started with an irregular heartbeat to almost no heartbeat at all. I never dreamed when I went to the ER last Tuesday that when I left the hospital it would be with a PM, although I was having some serious symptoms. Up until last Monday I was going to workout every morning at 7:30 before work. But, over the past month I had become winded and tired when I worked out. It's amazing I didn't pass out -- so thankful that I didn't.

Then this week it hit me like a ton of bricks that there is a device inside my body that's keeping me alive. I went to pieces. But, having sought out support groups for other ailments I immediately started looking for support. I found a support group and from there was also pointed to this one.

I'm not 100% anything yet but two things I have noticed -- I can breathe so much deeper and I can walk without getting out of breath. I still don't feel my old self but from all I've read here and elsewhere, I believe I will in time. So, hang in there Brenda we'll get there.

Linda

brenda

by jessie - 2007-09-28 12:09:10

it is true what michelle says . it does get better. your limitations will decrease and you will feel stronger and become more confident. it does tho take time and one step back and one step ahead. one thing i would not be here without it so that is mind boggling to contemplate. so easy does it. take one day at a time and it will get better. i cried for months every day. it is hard to accept for sure. so take care and take care of yourself. maureen

It Gets Better

by hooimom - 2007-09-28 12:09:23

Brenda,
I got my PM last July at 42 years of age. It gets better with a little more time. It is quite an adjustment both emotionally and physically. This is still pretty new and fresh for you. If you want to private message me I can go into more detail about what helped me. It mostly just takes time to readjust. My PM is placed in an area that causes some discomfort so I understand that part. I told my husband last night that my life seems totally normal now with a PM and I really can't imagine a time without it. You will get adjusted and one day it will seem totally normal to you. Give yourself time to heal. Your limitations will decrease as time goes on. You'll feel stronger and more confident with your pacemaker. The discomfort will ease up and you'll begin to feel like yourself again.

Michelle

chin up girl

by dgknecht - 2007-09-28 12:09:48

hey brenda, don't get so down, there are a lot of fine folks here for support! i am a new member here too, but what i've read so far looks like you found a good place!
i got my pm in march this year and i am 46. It also is a larger unit and i cannot sleep on my left side yet. Also my leads are very close to the skin, ( i am skinny ), and they hurt when touched, or when pressure is applied there.
I am starting to work out now and build that pectoral muscle hoping that may help. i like to think i've started my new life, my second chance. I am excited about doing things right this time! I am committed to a more healthy lifestyle with a good diet, lot's of excercise, and i qut smoking following surgery after 30 years!! When you begin to feel better physically, it's hard to NOT feel better emotionally.

Me, too

by koconnor - 2007-09-29 01:09:55

Hi Brenda--

I wanted to let you know that I had my pacemaker implanted when I was 39 for severe bradycardia, and I had a very hard time adjusting. I would say it's taken me about two years to really accept it and to actually appreciate it. I guess my biggest problem was that the doctors made it sound like it was going to miraculously improve my life overnight, and that I would bounce back quickly because I was young and fit. When that didn't happen, I became depressed and worried. If I had known about this site back then, I think my first year would have been a lot easier! So, as the others have said, go easy on yourself and recognize that no matter what the "professionals" say, each person heals in her own way and at her own pace, and it may take more time than you planned for. For me, it ended up being a much more emotional, personal journey than I was ready for, since it touched on deep issues of body image, mortality and independence. Maybe it's the same for you. Most doctors probably won't tell you this, but women who have been there understand. Good luck. PS: If you need ideas for how to wear a bra [it was pure misery for quite a long time for me] I can tell you what worked for me: get a "strapless" bra with removable straps, and take the strap off the side where your PM is located. Leave the other one on. You may be a little lopsided, but the bra will stay on pretty well, and if you really need to wear a bra for work or another occasion, it's a good solution. Be well. KSO

Oh Brenda I'm new too

by scpck - 2007-09-30 04:09:25

I was so glad to find this site today. I know how you must feel as I cry all the time and am always fearful. Keep in touch, I never thought about asking for a support group. But I am so happy this one is here as I live waaay out in the country.

P

You know you're wired when...

You forecast electrical storms better than the weather network.

Member Quotes

I have a well tuned pacer. I hardly know I have it. I am 76 year old, hike and camp alone in the desert. I have more energy than I have had in a long time. The only problem is my wife wants to have a knob installed so she can turn the pacer down.