New to this whole pacemaker thing

It *does* get better...

by crustyg - 2022-04-29 03:22:26

...but you're the main person to make that happen.

What you're going through is very common in folk who have recently had a PM implanted - in fact the emotional wound can take much longer to heal than the skin.

There's anger - 'failed ablation', loss of control over your body: fear - what if my PM fails: shame - no one will find me attractive: humiliation - they did this to me: anxiety - will it keep working when the battery gets low.  You can see that the list is nearly endless.

And - this is the difficult bit - it's all between your ears.  As long as you focus on the box, and worries about things you can't control, you won't move on.

Once you decide - and it *is* a decision - to focus on the rest of your life, the worries become insignificant and life is good again.  No more SVT - tick, that's an improvement.  No horrible low HR, gasping for breath after a single flight of stairs - tick, another improvement.  Boxes don't suddenly stop as they battery nears end of life - reassurance from others who've had 5+ boxes - tick, no need to worry.  Attractive - no change (just search for some of the contributions from other ladies here) - tick.  Sports/swimming/running etc. all possible again and enjoyable - tick.

If you recognise the abbreviation CBT then practise it.  If not, get some help, it makes a huge difference (there's even a Dummies guide to CBT).  And I know from a lifetime of experience being aided by the professionals.

You're not alone and you're young and healthy (compared to many) and life's for living - without or with your PM.  You can do this.

Coping

by Lola12393 - 2022-04-29 08:18:03

Thank you so much I needed to hear that! 

Coping

by Good Dog - 2022-04-29 08:46:21

I just want you to know that I received a PM suddenly and without warning at a very young age and I immediately had the same feelings as you. I think that what you feel is perfectly normal. I have had my PM now for over 35 years and this is really important for you to know; it has not changed my life in any negative way other than the occasional checks and battery replacement which amount to almost nothing. My life has been completely normal in every way! Had I not received it, I would either be dead or would have been miserably sick in bed for all these years. When I tell you that it has not negatively impacted my life in any way, I mean that. For most of the 35+ years I never even gave the PM a thought. It has not stopped me from doing anything I've wanted to do in all these years. Actually, quite the contrary. I have always been physically active and even though I am getting older, I still remain active. 

So please, it is normal to have a short mental adjustment to getting the PM, but you then need to just go out and live your life as anyone else without a PM! You are no different. No more and certainly no less!

Sincerely,

Dave 

hey

by Tracey_E - 2022-04-29 10:48:14

I'm so glad you found us! It's hard when no one else your age is dealing with the same thing. You are not alone. Crusty gives very excellent advice.

Cut yourself some slack. It's normal to feel angry, scared, to go through a period of mourning. Acceptance will come eventually but don't beat yourself up if it doesn't happen overnight.

Failure rate is virtually 0. Very worst case, your heart would go back to what it was doing before you were paced, which is enough to keep you going to get to a hospital. But that doesn't happen!! In 25+ years paced I've never even needed my pacer id card much less had a pacer emergency. 

Like Dave, I've been paced a very long time and would not be here without it. I got my first at 27 and I pace every beat. I'm 55 now, healthy and active. I had two babies with the pacer. No complications whatsoever, just some strange looks because they aren't used to seeing pacer spikes on the monitors on the OB floor.  I ran a half marathon with my oldest earlier this month. I have more than a few bottles of champagne chilled for her law school graduation this weekend. I'm doing a 2 week cruise with my youngest in the fall to celebrate her college graduation and have a hiking trip planned this summer with both kids and my son in law. 

Cruising, drinking, sex, exercise... did I address all your worries? Once you heal, you are going to live a perfectly normal life. People look at me and see someone busy and active, not a heart patient.  Go check out the gallery, I make a game out of posting active pictures to balance out all the post op pictures people share. There's nothing I want to do that I cannot. You will get there too. Thin ice was before you were paced when your rate got too low, now we both have super dependable high tech computers keeping us safe and feeling good. 

If you have questions about living with a pacer or just want to chat with someone who's been there, feel free to message me any time. 

one last thing

by Tracey_E - 2022-04-29 11:17:30

Be careful reading too much here. While there is a lot of support, there are also people with rare complications looking for answers or a place to vent their frustration. And that's perfectly ok! But it's easy to start to think that every other person has lots of complications! For every one person posting about a complication, there are hundreds, likely thousands, out there with no problems whatsoever. In reality, complications happen less than 1% of the time and serious complications are a small percentage of that. 

What Tracey Said ^

by MinimeJer05 - 2022-04-29 12:57:48

Hello and welcome to the club,

I wanted to immediately start my response by saying "what Tracey said" up above my comment, because she is 100% right -- this place is a GREAT resource for those with PMs and a powerful tool to seek out help and advice, but don't let it scare you or intimidate you -- I sometimes have to remind myself not to get too worked up when reading people's posts, because most people DONT experience any issues and just keep living their lives and people that generally seek out forums are the rare birds that do run into complications or are just like me and want more information and to chat with fellow PM'ers.

So don't read too much into the posts and think that is how you are going to live life.

Just try to keep moving forward and onward. Recognize what has happened and try to count it as a blessing -- you might not have had the chance to make this post without it keeping you going.

But then try to move on and return to normal. As many have said, the mental and emotional aspect is probably harder than the physical stuff. Your wounds will heal, your soreness will go away and you will soon start to feel better -- but if you focus on it too much inside your head, then you will start to create labels for what you can and cannot do as a person with a PM and that's NOT what you want.

I got my PM unexpectidly last year (I was 29) and I was NOT ready for it mentally and it's funny, because 1 year prior, I got a mechanical valve put in (full-on open heart surgery) and that was A LITTLE more prepared (I had about a month's notice), hence me NEVER worrying about it.

I'd argue open heart surgery can be more dangerous or complicated than a PM placement, yet I slept fine the night before my surgery. A little nervous sure, but I was home within a week and getting stronger day-by-day. I never thought much of it after my 2-3 month mark, once I could drive and things were healed up. I continued to live my normal life until the PM came into play and I think it's been harder because I wasn't mentally prepared.

But I am making peace with it and trying to move forward and reminding myself daily to be blessed to be alive and to just focus on what I CAN control -- eat well, rest well, stay hydrated and HAVE FUN.

We all have good days and bad days and the important part is to focus on having more good ones and learning to cope and manage the bad ones.

Know that this is just the beginning of yet another chapter in your long life! You ain't got nothin' to worry about!

Take care

Jer

It's safe to live with a pacemaker--no special cautions required

by Gotrhythm - 2022-04-29 14:56:35

Nothing that the majority of people would consider ordinary life or activity can harm your pacemaker or cause it to fail. Nothing.

Women with pacemakers give birth, chase 2 year-olds, and raise teenagers. Athletes with pacemakers put their hearts in their sport. (pun intended.)

So feel as angry, sad, disappointed, confused, disoriented for as long as you need to. Part of what you're feeling is grief for the future you thought you were going to have. Perfectly normal. There's nothing to do with grief but to go though it. 

But keep the grief in perspective. The future that's possible for you now won't be much different from what was possible before. More doctors visits, yes, but no less fun, joy, sex, physical activity, children, learning, etc and all those things that make life worth living.

Learn to trust your pacemaker. Pacemakers are engineering models of dependability, built to operate flawlessly 24 hours a day and support any activity in a normal atmosheric pressure. All those electrical/electronic dangers you'll run into warnings about? Any appliance safe for the general public is safe for you.

The day will come when you will forget for long periods that you even have a pacemaker--and it's completely safe to do so.

Thank you guys

by Lola12393 - 2022-04-30 10:01:49

Thank you guys so much for your comments. Seeing a therapist for my mental health right now. Everything you guys said was absolutely right. Just gotta stay in a good head space 

aint no thing

by dwelch - 2022-05-04 01:21:17

you are going through all the proper motions.  this is all perfectly normal.  why me.  is this thing working.  how easy is it to break it.   

I am also a Dave and 35 years with devices.  About half way throgh number 5 I figure...

It makes you normal, not special.  

I certainly would have died many years ago without it.  Nuf said.  Would not have met my wife, would not have raised a child, etc...I probaly would not have made it to your age. Statistically would not have made it into adulthood.  first device at 19 after years of regular checks.

The things are pretty tough physically, much tougher than your skin, have taken a couple of hard hits.   Have run mine to the first safety mode where your rate is fixed, this will make it last for months.   Running the device up to its upper limit. no problem.   Enjoying intimate company with others is not going to break it.  It will not give out.  Bumping it or leaning on it, sure that will hurt, just tell your partner this makes me normal, not fragile, I can do normal things just dont bump it, it hurts like hell...   Power walk, go for a run, soccer, bike race, whatever.  Travel, cruise, hike everest, the pacer is fine with it, it is all up to you.

Dont climb a telephone pole and hug a transformer, it wont kill you but it might confuse the pacer briefly, you pass out, let go fall, then the fall could hurt you.   Really close to big transformers and water turbines and generators (as in a few inches as in pressing your body against), is one of the very very very very few limitations.

Expect it to take months to a year to get past the emotions.  Nothing wrong in any way with seeking professional help on that.  Remember while this site is, well there is nothing else like it for us, it is like reviews on a shopping site.  Most of the questions are folks with issues or concerns.  folks that are doing perfectly fine, no issues, which is the vast majority of us, dont post any questions, maybe answers, but mabye not.  A tiny fraction of all the pacer patients out there are actually on this site.

It took most of that first year for me to get used to it and get through the fears.  what was that, was that my pacer, is something wrong, or is that normal.   This telephone wire has a pacemaker warning, what does that mean.  That year predated this site by about 3 or so pacers, I had to gret through all of that with no help.  You have this site and amazing peple like Tracey_e...Take advantage.

A bunch of that first year is getting used to the device in general. not bumping it, car seatbelts depending on which side you sit on and where it is.  little stuff like that.  for me and some others at least my lower rate is well above my pre-pacer resting rate, so learning to sleep again with a jacked up heart rate.  things like that.  but it really will be like a belly button or middle toe, you know you have one, but dont think about it unless you bump it, but then you forget again....seriously...

the handful of weeks of recovery every 10 years for the next device, ehh, aint no thing.  the toughest was the first one, now you know what to expect.   us old timers are driving our cars after a few days, sleeping normally takes me a couple of weeks.  washing my hair with both hands, same story.   but it aint no thing.  you usually forget about it by the time the next one comes anyway.

welcome to the club you are in good hands.  take your time.  this is all very normal.