Pace macker

Hi I had a pacemaker fitted 3 weeks ago got a complete heart blockage. Had a 3 wire 1. I’m only 38 and found out I was born with a congenital heart disease. My heart is the wrong way round.late on I will need heart op.I carnt stop crying . And 1 else been in this situation thanks x 


5 Comments

the new normal

by Tracey_E - 2022-10-03 21:45:00

I don't know how well they explained it, but arterial blockages that cause heart attacks are completely different from electrical blocks. We often have a perfectly normal heart structurally, we just have a short circuit where the atria and ventricles don't work together. The pacer steps in and completes the circuit. As heart conditions go, this one has a very easy fix and most of us heal and have very very few restrictions.

Although it's probably rare at your doctor's office, it's pretty common here. I got my first pacer at age 27 in 1994. I'm on #5 now, healthy and active. There's nothing I want to do that I cannot. Most of the time I forget it's there. There is no evidence that it will shorten our lifespan. I have a box under my bed that sends a report once a month and I go for a check up once a year. That's it. The rest of the time I live my life without giving it a thought. I hike or ski most vacations, love to kayak, run and/or go to the gym 5 days a week, ride roller coasters. 

I know it must seem all-consuming now.It's ok to be angry, to be scared, to grieve. That's all perfectly normal. As you feel better, it will get easier to not think about it as much. As you continue to feel good, it's easier to trust it to do its job. Something that helped me a lot was learning all about my condition and how the pacer fixes it. I can accept what I understand, the unknown is scary. 

I'm glad you found us! Know you are not alone. 

Two cautions...

when we are young and active, it's common to take a few tries to get the settings just right. They send us home with a good guess, but as we heal they will fine tune it to our needs. If you are symptomatic, don't hesitate to go back.

be careful reading too much here or on google. Complications are actually quite rare, however it will not seem that way reading the posts here. That very tiny minority will often come here looking for answers so it's easy to think it's normal. 

Heart block

by AgentX86 - 2022-10-03 22:10:37

Hi Westy, welcome to the club.  It sucks that you have to be here but welcome anyway.

You definitely aren't alone. There are many, many, of people just like you here. It's normal to be anxious right now but be assured that the pacemaker won't change your life in any significant way.  In a couple of months, you'll barely remember that it's there.

In the mean time, it would be good to see a cognitave therapist to learn some coping skills.  You'll be fine but may need some help to get over this bump.

It's interesting that you have a 3-lead (CRT) pacemaker.

The Good News

by Good Dog - 2022-10-04 07:44:15

Welcome to the club. First-off, I want to tell you that I also suddenly and unexpectedly went into complete heart block three weeks after turning 38. At the time, while at work, I discovered that I could not walk 10 steps without being completely out-of-breath. I suddenly felt just awful. As it turned-out, I was perfectly healthy one day and fitted with a pacemaker the next. That was 35 years ago. Tracy explained it perfectly and AgentX86 also laid it out very well. Rest assured; what you are feeling now is completely appropriate. We certainly don't expect to have an issue like this in our 30's and it is completely normal to be shocked and/or even suffer from a bout of depression as a result. I did! So don't feel lonely.

Well here is the good news: Having a pacemaker usually does not change your life in any significant way. As I mentioned; I have had my pacemaker for almost 36 years and my life has been 100% normal. I can do anything anyone else (without a pacemaker) can do. I take zero drugs and if I did not tell you, you would never even suspect that I have one. I received my pacemaker in February and it was snowing here in the states (New Jersey) at the time. I became really depressed as I watched my neighbors out shovelling their driveway. I thought to myself; OMG, I can never do that again. What kind of life will I have? Six (6) months later, that summer, I was playing competitive basketball and baseball. Now at age 73, I still shovel my driveway by hand. And we get a lot more snow here in Northern Ohio than we did in NJ. 

So I won't tell you how to feel, you are entitled to feel the way that you do. However, I just want to assure you that it will get better. You will soon feel normal again and as AgentX86 said; you will soon begin to forget you have a PM and likely will go on to live a perfectly normal life. A PM does not define who you are in any way. Like it or not, you are the same person you were before the pacemaker!

I wish you the very best! 

BTW: You will soon begin to feel like your old self again and may forget all about this website. Most of the folks that post here are only a tiny, tiny fraction of pacemaker patients that have questions or issues along with a handful of folks that have chosen to hang-around and offer support. Hopefully, you will consider returning here in the future to do the same.

Sincerely,

Dave

Welcome to the Club!

by MinimeJer05 - 2022-10-04 10:47:41

Hello,

As others have said, we are sorry to hear about your situation and that you have ended up here. But know, that this is only the new chapter in your life. Most people get a PM and don't even notice it and continue living long and healthy/happy lives.

The few of us that do encounter issues usually end up here and even then, most of us are still living good lives, just with the occasional reminder that other things are at play.

It's normal to be stressed, depressed, tired and just confused as to why this is happening to YOU. We all asked ourselves this at one point or another.

Please, do try to drink lots of fluids, get your rest and if it helps, try to better understand your situation so you can be assured that you will be back to normal in no time.

In the meantime, take it slow, listen to your body and don't be afraid to ask questions and speak up.

I hope in soon time, you will be back to normal and enjoying your life!

Take care

Jer

CCHB

by dwelch - 2022-10-14 01:47:54

You are not alone, CCHB (complete congenital heart block) is not what most folks here have pacers for but level three or complete heart block is trivial to fix with a pacemaker.

These days with EKG's being all over the place kind of a surprise you didnt find out until late 30s.  It is trivial to see heart block on an ekg, pretty much every beat, literally takes seconds.

Like tracey I am also on device number 5.  I was diagnosed pre-teens and knew the pacer was coming for several years.  I was very active, socker, bmx, skateboarding, snowboarding, etc.   The pacer only made those things safer, they did not in any way restrict them.

I was 19 when I got my first pacer.  I am pretty close to having a pacer 2/3rds of my life now.

And as far as my heart and pacers and CCHB, it is trivial as tracey pointed out. You literally forget it is there, it is like a belly button or middle toe, you know you have one but you dont think about it, and unless you bump it into something you forget, and shortly after you bump it you forget again.  Wearing glasses are signficantly more of a problem than having a pacemaker as far as day to day life.

You may feel different for a while, lets say the first year, but maybe only several months.  Your lower limit is very likely higher than your normal resting/sleeping rate (my resting rate was 44 and would go down into the 30s when sleeping.  I think first pacer started at 60 then maybe we went down to 50, back then they didnt have smaller increments.  I am back up to 60 now from a doc I basically fired, but the new doc which I really like, we kept it here.

Anyway, in my case my heart had gotten so big that I literally could see and feel every beat, you could see the heart beats between my ribs and I always could hear it in my ears.  And that was my normal pre-pacer, because it had gotten so big the doc said it was time.  I didnt have to feel for my pulse to take my rate, I could just look at a clock or watch and count.  Post-pacer, with a nicely fixed heart thanks to the pacemaker.  Quiet and empty inside, I took a very long time to get used to that, I would take my pulse very often (60 seconds no shortcuts, always do 60 seconds, watches dont work, you can get a pulse-ox clip for your finger that will work)

Everyone goes through the same experiences, some worry more than others about certain things.  The first implant is the worst, you are likely in recovery for that.  Recovery is always measured in weeks, and can be many weeks as in months.   But it is not like one day two months later it goes from recovery to finished.  things like sleeping through the night, takes maybe a week or two.  Depends on the person,  Sleeping in the position you like is part of that first few weeks, I sleep on my side, and cant sleep on the one side for a few weeks.  So the lack of sleep makes the first few weeks less fun and you may think it is because of the new pacer, but some of it is just exhaustion (and some is anxiety).  And some is the new lower rate.  I can take a while to figure out how to sleep again with a jacked up heart rate, this is a one time deal, after number one you keep the same rate......for decades, if not forever, so you get used to it and dont have to again.

Washing hair with both hands, getting dressed, these things vary, sometimes measured in days even though the doc says dont raise that arm up for months.

Driving you will see in these posts that the few CCHB people here or lets say folks with many devices, we are driving within a few days after the device, two days, three.  I usually wait a little longer, get the device on whatever day of the week, wed/thursday, take off of work the rest of the week, and then drive to work the next monday if I am feeling it.  And yes start back to work a few days after implant.   After the first one.

There is someone here with even more pacers so far than the rest he is on 10 or something and started in the 70s I think with the hockey puck sized ones.  I started in the 1990s and my first one was huge compared to todays, but my doc at the time showed me what the prior generation looked like.  

You will go through the, can I use a microwave, can I go through the airport scanner, can I use a hair dryer or electric toothbrush or lawnmower or anything else with or without a cord and an on/off switch.  Yep you can use all of them.  Unless you are a welder or work in substations or general power station/line work.  Daily life stuff that everyone uses, not a problem, but despite that you will still have moments of anxiety.   Your first concert post pacemaker, if you do that sort of thing, the thumping of the speakers affects everyone not just folks with pacers, it is normal it is not you or the pacer, just anxiety.   Even decades into this journey (34/35 years now) there is the brief moment you stop and think whoah what was that, was that the pacer....okay no it wasnt. or let me take my pulse for 60 seconds, okay its all good.

Every 10 years giver or take get a new pacer.  You are likely and for DECADES will be the youngest patient in that doctors office, it was nice in my 50s where pretty much every other doctors office it is about "well just get used to it" rather than "we can fix that", to hear my EP say something about me being young.    You will retire doctors if you can stay with one office for a long time (dont move yourself or insurance doesnt force you to switch docs or you decide to switch docs).  I have a feeling I am going to retire this one soon.

Ignore the battery life estimate on the report, Until it says weeks, it is a bogus number.  the doc will tweak your settings to extend battery life, but it is not predictable, no to devices, even the same model will behave the same, and your consumption is your consumption, I had some 7 year ones and at least one over 10 year one.  It is what it is.

When you go into the office.  well, in the USA you get the device, you get a few week checkup they look to see the leads are seated well and your incision is healing.  and maybe tweak the device. then you go in for a few month visit, again check stuff, maybe tweak the device, then often the one year visist start from there, until you get close, they will react to the battery estimate but that may just mean more home checks with the take home box, or visits more than once a year, but that home stretch can be for a number of years, 2 years, 3 years...No fear there the device has a savings mode at the end that you are just fine for months.  We can talk about that on this site in 10 years when you are ready.

When you go to the office, ask for your copy of the report, they should provide you that either on paper or some folks get it on a thumb drive.  Mine has always been paper.

You can use that printout to ask questions here or we may ask you questions if you have further concerns.  Primary ones to look at are upper and lower limit.

You have a three lead like me, AKA biventrical.  one Atrial and each of the ventricals get their own.  This allows for even pacing.  Longer conversation.  both of the lower leads will be at 100% paced. this is normal, and expected, and does not mean you are 100% dependent as you already know, the day before you felt fine.  They will turn off the device during the visit for a few seconds and they will see your underlying rythm, and it will show heart block.  This will feel like someone sitting on your chest for those few seconds.  perfectly normal.  A good tech will tell you when it is coming, others will not, I spent a couple decades hating the techs that didnt, but learned to get over it...and dont get upset anymore.  

Having a three lead you might get the belly bumps, the heart is not centered, one V lead is closer to the belly muscles than the other, if the signal is too strong and/or you are sitting or laying just right, it will fire your belly muscles along with the heart muscle.  I think this is funny and wish I could make it happen all the time but it seems like I have to be tired and have certain breathing and be standing up and leaning against the wall just right for it to happen and I get one bump.  some folks with a biventrical have it happen all the time, if that is you call them and get it adjusted, it is clearly no good to have to deal with that every heart beat every day.

ANYWAY...

Welcome to the club you didnt want to join.  Pacers are easier than glasses.  You WILL forget you have it, or at least will not think about it but know you have it.   heart block in general is one of the best heart problems if you have one because it is so trivial to fix.  You are not broken....anymore...the pacer makes you normal now.   Folks that make TV and movies have zero clue about pacemakers and make it seem like you are frail and weak or whatever instead of the fact that you are normal and in some cases like us with CCHB, we are extra normal, our pacers will get us through things "normal" folks might not.

You are now well and in good shape.  You have a device that will last for many years, it will not let you down, even when it is close to its end.  The replacements are easier than the first one.  You will be a pro like myself and tracey and agentx86 and others, whether you hang out here or not.  

Find a doc you like trust the doc you find.  they pick the device they pick the surgeon, the hospital, etc.  you just show up.  if you at any time are not having a good relationship with your doc. get another.  Dont suffer because you are worried about their feelings.  You are going to see this doc a few times this year, ask questions even though you know the answers from this site (or know that docs answers will vary).. It could be the greatest doc in the world but if they cannot also communicate with you then it is a failed relationship, need one that can do their job but also can communicate with you...If it is all medical terms and they dont care if you dont understand...time for a new doc.

you are not alone, you are not the only one, there are tons of us around the world in your situation, and a small fraction of them are on this site.  an added bonus is Tracey_E who also has CCHB is here...

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