how long for you guys

How long?

by Gotrhythm - 2018-08-14 15:02:29

I had to smile. Somebody asks this question regularly. The answer is; it depends and who knows.

Everybody is different. It was maybe 4 or 5 months before I realized I hadn't thought about it in a while. After 2 years, when asked about previous surgeries, I listed serveral but completely forgot pacemaker--something I would have sworn a year before couldn't happen.

thank goodness

by bluevelvetcake - 2018-08-14 15:10:05

I'm glad to know. I'm sure my husband and kids want to leave me by the side of the road at this point, ha ha ha ha.....

Getting Used to A Pacemaker

by Heart-Rhythm-Center.com - 2018-08-14 15:47:17

One of the most important aspects of a patient’s life after pacemaker implantation is acceptance of the device. One can minimize this by saying “The device is implanted and you have to get used to it!”  Unfortunately, it is not this simple.  Patient acceptance of a device can be thought of as:

“the psychological accommodation and understanding of the advantages and disadvantages of the device, the recommendation of the device to others, and the derivation of benefit in terms of biomedical, psychological, and social functioning.  Patient acceptance is theorized to be a device-specific component of the construct of quality of life.” Burns et al (see below for reference)

This can be simplified to mean that a patient has accepted the device when they understand the life-saving benefits of the device outweigh its risks and their quality of life is not negatively impacted by the device.  Not only can emotional stress cause cardiac events there is some evidence that certain personality traits can affect the long-term prognosis of pacemaker patients.  Warning signs of patients that may have difficulty adjusting to their pacemaker (and possibly have more heart rhythm abnormalities) include patients with high levels of pre-implantation device-related concerns as well as individuals that experience excessive worrying, depression, negativity, and anxiety.

Quality of life refers to the general well-being of a patient.  Most pacemaker trials did not particularly study the effects of pacemakers on a patient’s general well-being.  Device patients have been found to have similar quality of life ratings as heart patients without devices. Furthermore, the reason for device implantation does not appear to affect patients’ quality of life ratings. It sounds as if you are getting used to the pacemaker and over time, you will begin to forget about it knowing it is there to protect you from slow heart rates. If you continue to have difficulty adjusting to the device, talk to your care providers.

Hope this helps.

Burns JL, Serber ER, Keim S, Sears S, “Measuring Patient Acceptance of Implantable Cardiac Device Therapy: Initial Psychometric Investigation of the Florida Patient Acceptance Survey,” J Cardiovasc Electrophys, V. 16, No. 4 (April 2005), pp. 384-390.

thank you so much

by bluevelvetcake - 2018-08-14 17:37:15

Interesting information. The pacemaker has actually taken a load off of me mentally as I always thought I would have plumbing issues due to family history. No one had electrrical issues but after a lot of tests and ultrasounds my heart is extremely healthy so that has relaxed me. I've always had weird heart rhythms so knowing I wasn't imagining that also has helped. The only thing shocking about the whole situation is I didn't even know what a pacemaker was so when they told me I needed one I was floored. The one thing I'm trying really hard to do is not stress so much. The doctor told me already that is probably a big cause for all of this. So perhaps the idea that I"m trying hard to NOT stress to keep my heart healthy is keeping me from just forgetting about it. Because of this hard work on my part it might be a good idea I never forget cause I am a stressor for sure!  I just really blew off that whole stress stuff as hippie junk before. Now I know it to be truth and a little too late at that. 

Thanks for the lenthy feedback, I do appreciate it. 

It depends

by Theknotguy - 2018-08-14 18:14:38

As GotRhythm said, it depends and who knows.  It was nine months before I finally got out of the car, walked across the parking lot, and discovered I hadn't thought about my pacemaker.  From there on I'd be doing things and would remember I hadn't thought about my pacemaker for anywhere from a few hours to a few days.  But, they had busted my ribs doing CPR and every time I'd get a twinge from the broken ribs it would be a reminder that I had a pacemaker.  Ribs heal slowly so it took me longer because of the painful reminders.  

Your internal mental acceptance of the pacemaker will drive your family batty for a while, but hey, they don't have a large piece of metal sitting inside their chest.  And they haven't been told they need the large chunk of metal otherwise they'll die.  It takes a while to get your mind wrapped around the situation and that's going to take time.  

I was talking with a doctor at the hospital today and told him the informational paper they hand out about pacemakers has, of the ten items listed, four that are completely wrong and six that are partially wrong.  The only place we with pacemakers can get information from people who have pacemakers is this forum.  That has the disadvantage of keeping the pacemaker foremost in your mind and it makes it harder to forget.

Hope everything else is going well for you. 

thanks Knot and Robin

by bluevelvetcake - 2018-08-14 19:09:24

Man, Robin, I'm sorry you are still in so much pain. I understand your acceptance that its better than a stroke but it still sucks in any case. The shoulder thing really sucks because mine hurts but  will eventually get better. If I knew it was bumping into it and possibly would never get better I think I'd be very depressed. 

Knot it is true about learning more from others that have them. The doctors have no idea unless they have one. I actually shut my EP down the other day because he said something like that it wouldn't hurt and I said oh you have one? He looked at me and said touche! 

I will admit I'm a devious one. My son turned 14 and he is the baby. This is my third horrible hormonal teen. I keep saying quit upsetting me, youre making my heart tense up when he gets snarky. Its like using the whole santa won't leave you any presents. He has mellowed out a lot, ha ha ha. Don't worry I'm not using it too much but man, you gotta use all your cards sometimes!!! hee hee. 

Who knows?

by AgentX86 - 2018-08-14 22:11:23

It's been six months and I still think about my PM.  It's never freaked me out, at all, but I'm constantly reminded of it.  Then again, I'm reminde of my CABG/Maze surgery, almost four years ago.  I have some pain on the left side of my chest, which I assume is from nerves cut when they did the sternotomy and a lot of scarring along the sternum.  Again, none of this freaks me out, it just is.  I think my wife has been more freaked out by all of this than I have.

Attitude

by AgentX86 - 2018-08-14 22:55:41

Well said, Robin!

"You have a brain and two feet you can choose your own direction."

                                                                                           --Dr. Seuss

2 months is still early

by Grateful Heart - 2018-08-15 12:12:06

A day will come when you don't think about it.  And then you will realize that you didn't think about it all day.....and smile.  But then the next day you will realize it is there again...whether it's a movement or shower time....and the process continues.

But in time, when you come to accept it...it just becomes a part of you.  A sense of humor and joking about it is helpful and it eases family and friends minds as well when they see you are not stressed about it.  Acceptance and attitude is key.    

So when you think about it, if you think about it with gratitude and comfort...the day of NOT thinking about it will come that much sooner.  :)

Grateful Heart

thank you everyone

by bluevelvetcake - 2018-08-15 14:46:48

I really like this forum becaue I truly believe the people that post frequently have good hearts and want people to feel better about their new situation.

I totally feel you, Robin. I know that things could be a lot worse than pain in your shoulder for the rest of your life but it still sucks. I'm sure that your work is a constant reminder of that and certainly that helps you cope. 

As far as my attitude I feel fine about this pacemaker. At first it was rough. I got it suddenly, after an ER visit with a 48 hour monitor placed. then the new EP I went to after the PM  suggested I probably didn't need it and that got me super depressed because I was in so much pain and the thought of this thing in me for the rest of my life for no reason pissed me off.  Then a month of his tests he said I needed it and he said that he would have put it in me too. After the emotinal rollercoaster ride I was able to process it and am totally fine with it. 

I realized the past 6 months before the PM my energy was so gone. Sunday was the first time in nine months that I could run three miles without stopping. I used to run ten! Jogging this morning I thought about how appreciative I am that I have my energy back and I can do so much all day now. For all of these things I am grateful and it really doesn't bother me so much now, except for this shoulder pain. 

I do think about it a lot but hpefully it won't be on my mind 24/7 after time goes on. Guess  we will just have to wait and see. 

Probably forever for me

by Sharon M. - 2018-08-15 22:41:18

I do yoga, and dance exercise classes with cooldowns. There are things that are now uncomfortable to do in each of these. So I notice it's there. And when I drive, my seat belt cover slides over it, and I notice it's there it. It's no big deal, but it's there. I suspect I will think about it often. It's obvious on my scrawny chest, and that's just the way it is. However, most of the time, I'm not thinking about it, because it doesn't bother me. It's a positive, not a negative. But the more active I am, the more I'm aware of it. It's just part of my new normal. A good part.

When I got my valve replacement 25 years ago, I thought about it constantly for a year!! This seems much more benign, and it just isn't constant. Everyone is different. Let the thoughts come and go as they like. Try to keep them positive. Eventually they will come less often, when your mind is ready. I like to think of the miracle of having 2 devices keeping my heart working, and how amazing that is.

Amen!

by AgentX86 - 2018-08-15 23:04:56

"I like to think of the miracle of having 2 devices keeping my heart working, and how amazing that is."

We live in wonderful times. Embrace it!

How long

by tammyjk1021 - 2018-08-21 22:20:56

I was part of the medtronic micra study and that kept me up at night having a device that wasnt approved by the FDA.  I still think about it but one day I decided that my PM was working as it should and I thought, I know my heart isnt going to stop and you know, not everyone can say that.  Recently, I found a fantastic app on Alexa called hypnotherapy.  You can ask for stress, pain, sleep and so on.  At first I thought no way this is going to work.  After about 3 sessions, it worked like a charm.  In less than 10 to 15 mins I'm out light a light.  

took a while

by dwelch - 2018-08-28 03:22:08

It is going to be different for everyone as everyone has stated.  In my case I had complete heart block, a heart that kept getting bigger and hitting harder.  So when the first one went in at 19 years old at that point I felt every beat I could often take my pulse by simply looking at a second hand, didnt need to put a finger on my wrist or neck.  that all went away it was a VERY empty feeling. I literally took my pulse often just to see I was still alive.   Now 30 years later, pacer number 5 I dont think of it much at all, its like wearing shoes i fyou think about it yeah I feel them there, I can look and see them there, but you really forget about them most of the day.

I didnt have an emergency deal like so many folks here, I actually had several years from when we saw the problem to pacer number one, so that part of it I was long ready for.

30 years ago the pacers were not as good as today, I had to go in a number of times that first year and wear holters to get the thing dialed in.  Now some of that formerly manual tuning is automatic, so you will probably need some tuning, and going to the doc to check your pacer reminds you you have a pacer.  My wife, who doesnt have one, thinks of it like glasses, its a bit more important than glasses, but at the same time also a lot similar, you forget you are wearing them, its just a natural extension, you go into the doc once a year to get a checkup, and just repeat that.

How everyone copes is different.  Maybe this will help.  You shouldnt fear having a pacer with a heart condition you should fear NOT having a pacer.  Once you get the thing you can rest nice an easy, can sleep well knowing you will wake up in the morning, etc...

over 30 years with a pacer I still "think" about it every day but at the same time I forget I have one.  I think about it every time I put the seat belt over it, have gone through a number of solutions, last 10+ years those fuzzy soft things you wrap and velcro around the belt.  YMMV on how yo solve that.  I see the scars (plural) in the mirror every day, but you know I see my arms and nose too every day in the mirror as well.  So I am reminded many times a day as I have allergies too, that I have a nose.  So what its just another part of me, like the pacemaker.

As far as the regular implant recovery visits once a year, replacement recovery visits once a year. repeat forever.  The recovery part of that cycle is really short, while you are in it it makes for some long days and cant get comfortable to sleep, but that passes quickly.  Your first one you also have to learn to be protective of it not to bump it into things, stuff like that so extra pain that first year lets say as you will bump it more that year than the years that follow.  by pacer number two you have the few days/weeks of the painful recovery then its back to normal.  The last two or three I was ready to go back to driving and back to work 2-5 days post op, between the doc and already having sick leave scheduled and my wife I waited a couple more days at least each time.

We are all different in how we cope, if you are not able to get past this then go talk to a professional about it, they may be able to tune a solution for you.  If this is just the recovery phase and nothing more, then you will be past that soon if not already since this is another couple of weeks since your post, then most stuff should be getting normal again, comfortable sleeping positions and dealign with the seatbelt if yours is on that side these take a little longer, I dont wear bras, but for those that do that can also be an issue beyond the rest of the recovery finishing.   But like your nose you get used to it being there, you dont think a whole lot about it, its just another part of your body.