Just found out I need one.

Just found out I need one

by smokygolfer - 2017-05-11 23:18:21

Thumbcoast,

I too was surprised when I found out I had SSS. I had become symptomatic, was monitored and diagonsed. After much discussion with my EP I decided to wait a few months to sort things out. Since, in my case, treatment was not urgent I took time to do  some research and soul searching. As time went on my symptoms got worse so I decided to go through with the implant. I am now 2 1/2 weeks post op and I feel great! The actual procedure was pretty darn easy - a little "funny juice" and I woke up pacing. Still tender around insertion area (expected) but, at this point, glad I finally pulled the trigger. So, my personal experience has been very good. I fully expect to resume my active lifestyle in a couple more months. My advice ( if you have time) is to think this though, do your research and decide for yourself what is best for you. I believe the more mentally prepared and informed you are the better your experience will be. This site was a good resource for me. Good luck to you!

Freaking out .....

by donr - 2017-05-12 08:12:59

....and well you should be at age 49!  You are still too young to have recognized that you are truly mortal.  That slowly creeps up on you as you reach 80. 

At 18, you are going to live forever - why do you think that teens & young 20's do such foolish things?  In the 30's, 40's & 50's you have so much to live for that you fear death & the least hiccup in life sends a chill up (or down) your spine.  At 60, if you keep track of your high school or colege classmates, you see them slowly disappearing & the dawning of mortality begins to creep into our consciousness.

Freak out - I had the "Mother of all freak-outs" the afternoon I got the word that I needed a PM.  At about 2 PM, my Caredio's hewad nurse came running inton the hosp room I was occupying, waving  a sheaf of paper yelling "Don, I know what is wrong wityh you!  You need a PM!"  15 min later, after hosp maintenance brought her an 8 ft stepladder so she could climb up & bring me down off the ceiling where I was swatting flies, she calmed me down & explained reality to me.  Here I am, 14 yrs later, writing about it - to a fellow freaker!

Freaking at such a diagnosis is a normal human condition/reaction.  But now it is time to come down off the ceiling, join us on the floor, face reality,  and play the game of life w/ the hand you have been dealt.  A PM is NOT a death sentence.  It is a change in life style - for a while - as you come to terms with its effects on YOU, as we are all different.  As you will learn in the coming days, nearly all of us go back to doing the things we did BPM (Before PM) - bike, run, hike, climb, raise children, eat, drink, be merry.  We don't, however, get a job on a road repair crew operating a jackhammer busting concrete with our belly hanging out over the handles!  We don't join the US Marine Corps Drill team so we can slap a 9 lb rifle onto our shoulder right over the PM site.  We don't join a tournament leading to the World's middleweight kickboxing championship (Och!).

What we do is join the PMC, research our situation & find out what it is all about.  We have an electrical problem - big deal!  It can be solved very simply by a PM in your case, w/ Bradycardia. (Mine, also)

In the short run, the PM is far more reliable than your native heart - that's about ten years - and it can be easily replaced.  We have members who are outlasting their 5th PM. We have members who are 100% - yes, TOTALLY dependent - on their PM for life - and they have had multiple PM's; and they run long races.  Your PM is your best friend. 

To end, let me give you some alternate choices - Breast cancer, ovarian cancer, brain tumor, head on colllision w/ a speeding semi, polio, ebola, massive myo-cardial infarction.

Which would you choose?  The lady or the tiger....

Donr

Wow...

by WiredandTired - 2017-05-12 08:55:18

You guys really helped me get a grip.  I can't tell you how much the experience of others is calming my fears.  Just a couple of months ago I was active, treadmill daily, eating healthily (ok, so there were some donuts....we don't talk about it. ) and started getting little flutters....but no big deal.....that turned into feeling faint occasionally, but passed relatively quickly.  Then I had a faintness/tachycardia event in a store which landed me in the hospital for 6 days....all heart tests checked out.  Symptoms just worsened and I am dizzy, lightheaded, brainfoggy daily now.  They just slapped a 30 day monitor on me and it wasn't on me even 8 hours before they caught a 3.4 sec. pause in my sleep.  So many worries and questions.  Thank you for your kindness and wisdom. Good health to you as well.

fear

by Tracey_E - 2017-05-12 10:01:38

Feeling freaked out is perfectly normal!!!! Most of us have been there, done that. I found the surgery was easier than expected and I felt better after than I ever dreamed, it was night and day. 

Eating well and taking care of ourselves prevents plumbing problems, clogged arteries. We have electrical problems, which just happen, often an random in an otherwise perfectly healthy heart. Nothing we did caused it, nothing we could have done differently would have prevented it. The good news is it's a relatively simple fix. 

Pauses under 5-6 seconds aren't really a big deal by themselves. It's dips  and/or when the heart doesn't go up on exertion that leave us symptomatic and where the pacer will help out. It won't let our rate get too low. If it senses we are moving, it will raise our rate for us. 

Talk to your doctor about your lifestyle. Pacers have a feature called rate response which senses activity and raises the rate appropriately. If you have SSS, you will be using this. There are different types, and not all of them are appropriate for all activities. For instance, one that only works on motion won't sense if you are riding a bike because  the chest doesn't move much with cycling. So, a cyclist would do better with one that senses respiration rather than just movement. Have this discussion with your doctor. Many patients are older and couch potatoes so it's possible your doctor doesn't have a lot of young, active patients so it may not be something he/she takes into account. 

Practical advice, wear a button up top to the hospital. You won't feel like pulling a top over your head. I skipped the bra the first few days then wore tanks with the built in shelf bra. 

At night, I found it helpful to sleep hugging a small pillow. It kept me from rolling on my sore side.

The good news is most of us heal, get back to our lives, and for the most part, forget it's there. You'll get there too. If you have questions or just want to chat with someone who's been there, lemme know. I'm 50 and on my 5th device. I hike or ski most vacations, kayak every chance I get, do Crossfit 5 mornings a week. No one looks at me at and sees a heart patient. This is a big shock, but it will quickly become your new normal and life goes on.

FIVE???

by WiredandTired - 2017-05-12 10:19:47

Thank you so much TraceyE.  It's so reassuring to hear these stories.  5th one!  Wow!  I'll definitely take your advice.  You guys are angels....

Freaking out

by TBrous&Chip - 2017-05-12 10:27:12

Most people have similar feelings-disbelief, fear, anger, depression.  All real in my mind and justified in my opinion.  I had 8 months of problems with fainting and borderline test results.  Luckily no major injuries during this time.  The trigger to getting the PM was when my HR would not rise above 42.  A trip to the Emergency Room and a few hours later woke up with my new friendly PM. Total heart block was the diagnosis and 100% PM dependent.

The improvement was and is dramatic.  Over the past year since the install there I have needed a few PM adjustments. Otherwise I am active and happy. We have traveled to Iceland and Europe  and  taken a transatlantic cruise without incident. As compared to other diseases like donr listed in his comment, I am thankful for just needing the PM.

This forum has been very helpful through the past months.  I wish you the best as you go through your research toward reaching a decision.

You'll be fine

by Grateful Heart - 2017-05-12 11:02:50

I didn't know about this site (or anyone who had a PM) when I was diagnosed....SSS, LBBB, Cardiomyopathy, enlarged heart and EF of 24%.  When they told me I needed an AICD (PM with a defibrillator) I thought I was doomed.  8 years later, my heart is no longer enlarged, my EF is 55% (close to normal)..... truly amazing!!  I am very.....well, grateful.   

As time goes on and you learn more about your condition and device... it will help to ease your mind.   

Knowledge is power!

Grateful Heart

Don't worry

by DaveM1962 - 2017-05-12 17:30:35

As others have stated, your problems are electrical and not plumbing, so once the settings of your pm are optimised you should be okay to return to training. 

As much as the decision is yours, it makes sense to have one if your heart is pausing. I suffered other injuries through syncope that were a lot worse than the cause and could have been worse. The pm will give you peace of mind.

the operation is okay. I was awake for mine and enjoyed the experience. My cardiologist explained everything he was doing. 2.1/2 weeks later I am doing fine. A little bit of soreness still but getting better. I can tell the pm is working at the pace it is intended to kick in and it hasn't prevented my HR getting to its maximum of 165.

An excellent book to read is Pacemakers Made Easy by Carl Robinson. Available on Amazon 

Good luck

Thanks

by WiredandTired - 2017-05-12 18:56:21

You all have such a positive attitude and I'll definitely check out that book too. thank you all again.

having one means you can get on with your life

by bridgermichael - 2017-05-12 20:02:41

no one in the club has had a pm fitted who hasn't needed one and although there are some unknowns prior to having one fitted, once it is implanted you really can get back to living a normal lifestyle - the first month you are thinking did I do the right thing but the alternative of not having one is also the fear that one day you may 'drop' - once you have one there is no looking back and everything is stable and back to normal - even car insurance companies are happy as you are less of a risk as the pm will kick in if you are having a blip moment and you won't be affected! embrace the op - it's being recommended for a reason - I certainly have no regrets and feel blessed that the monitoring , the unknown will I pass out again worries are over and life is good.  Yes you are awake when it's fitted - I had two leads from mine and some minor discomfort while the body tries to reject the alien within for a week or so but once it's embedded then it really is back to normal - good luck with the future - you really won't have to alter much ! 

Just found out.

by betelayne - 2017-05-12 21:06:41

Lots of good posts.Good people.Stay in touch and let us know how you are doing.

Great people

by WiredandTired - 2017-05-13 08:34:27

I'll definitely keep you posted.  You guys have helped tremendously.  I can't thank you enough.  Still scared but feel more armed with information.  Be well, all.

sorry late to comment

by confused - 2017-05-16 13:06:07

Hi,

I know how you feel.   My user name is confused because when I found out I needed one that is how i felt.... confused!    I was 44 when I got mine and that was back in October of last year.   I can honestly say it was the best thing I have ever done for my health!!!  I was tired, weak and in a brain fog all the time.   I can now think clearer and feel like I have my life back. 

I was hung up on thinking I was too young to have this done but now I think that was silly for me thinking that because reallly what does age have to do with it.  If ya need it ya need it.

I look back now and couldn't imagine feeling like that again.   Not even sure how I was functioning.   The difference in my life is huge!

I was also worried about the look of it and it is not bad at all.   Other than the scar you can't even see it. 

Good luck to you and I know it is scary but please know you can live a normal happy life after receiving a pacemaker.   For me it was a gift!

Tammy

Thanks Tammy

by WiredandTired - 2017-05-16 13:28:46

I don't even care about a scar...I can make up a cool shark attack story or something...lol.  Just got my surgery date about 45 minutes ago and cried.  Just nerves, I guess. May 25th. The thought of feeding wires into my heart isn't sitting really well.  But....the alternative is definitely not better.  On the brighter side, I too am looking forward to getting my life back.  I've been faint, weak, dizzy, exhausted and stupid (brain fog) since mid march.  I just hope it all goes well.  Thanks for so much help and advice everyone!

number five

by dwelch - 2017-05-17 02:00:43

I also am on number five, 30 years with pacers, got my first one at 19 years old.  I wasnt freaked out before, by that time I had been in to see the doc for several years, going from active teen to college and adult my heart changing, etc the doc said it was time.  A 15 year old cousin had been killed in a car wreck the year before and I saw what that did to the family, So I wasnt going to gamble and say no, was about to be an adult on my own with out any clue how I would pay for this down the road (didnt know how that worked) so trusted the adults and got it, no fear.   By this point in my life every doctor visit of any kind anyone with a stethoscope wanted to listen to my heart, felt like a lab rat, so another team of folks putting me on a table and messing with my shoulder, lab rat, it will be all over soon. 

The freak out was the next year or at least some number of months (it was a long time ago now) I had this hollow empty feeling inside, my heart was beating like a normal persons instead of what I was used to.  I kept checking my pulse to see if I was still alive.

Actually the freak out was a nice old woman, also a patient let the doctor let me come in to show me what a pacer looked like what the scar looked like (they bulged out a LOT more then), but she had had open heart surgery, there was no teen boy looking at a woman in a bra stuff, there was no looking at the pacer scar, there was the OMG am I going to have that big scar from top to bottom like that, is that how they open you up.  Wasnt until back in the other room that the doc said no she had a bypass you wont be having that scar, that i calmed down...I told at least one doctor down the road if anyone wants someone to talk to about this I am available, they never took me up on it but coworkers did when their parents were facing one.  Now we have this site...

These things make you normal you can go back to the treadmill, sneak a donut and say you didnt, whatever.  My recovery times now are nothing, the pacers are tiny now my pocket is well used, was ready to go back to work two days later, but waited on driving for a couple more days.  Everyones recovery is a bit different, at the same time we all go through pretty much the same thing.  Its sore dont bump it, they tell you not to get it wet for a while (cut a sandwich bag up and taped it on with over the counter medical tape), I am a guy I dont have the bra strap problem, but the seat belt is, I use a glove sitting around in the car or bring a sock and use it as extra padding until the scar gets to where it isnt as senstive anymore then the fake sheepskin fuzzy seat belt shoulder strap thing is adequate (YMMV, over the decades have tried many solutions, the seat belt has been my number one pacer issue of all things, should put this in perspective if that is it, the old pacers wer emuch larger and this was a much bigger problem than today).

So many of us here have been through the recovery.  The docs/staff are going to be covering their butts legally and may even have strict orders as to what they tell you.  dont lift your elbow above your shoulder for 30, 45, 60 days, dont lift anything over 5 pounds for 30, 45, 60 days, on and on.  dont drive for one, two, four weeks.  The pain will drive you, I didnt need any meds, it feels tight to me, but no steady pain, does hurt if you move it to fast or kind of funny but open your mouth to eat something the first day or two streching the skin on your neck which pulls on the skin on your chest and the incision.  But over the days/weeks dont jerk your arm around at first, slow movements the pain if any will tell you where the limit is that day, if you find the limits each day you will move them out further each day.  Do not lock your shoulder, it will get frozen and really hurt, did that once.  You dont want to move it around inside, dont sleep on it directly, might take a few days or more to get regular sleep, I think even with number five I only slept an hour at a time on the non-pacer side and then had to sit up for a while and then tried to sleep on the non-pacer side, took a few days to try to sleep on the pacer side

sorry rambling.

the thing makes you normal, you have nothing to worry about, the collective experience on this site is I have no words for, there wasnt a public internet when I got number one, wasnt until number four, and by then I thought I was a pro but continue to learn each time I come back to the site.  We already know more than any doctor or tech or nurse without a device, but as a collective we know just about all there is to know about these things 

You can use your coffe maker, cell phone, lawn mower, clock radio, microwave, and anything else that might have a pacemaker warning on it, dont climb the telephone pole and hug the transfomer though, that might have a big enough field to affect your pacer.  

You WILL eventually forget it is there until your annual checkup or until you bump it, you will subconsiously learn to protect it from bumping it without remembering you have it...The bra strap or seat belt or both are daily reminders, but at the same time we are reminded we have two ears two eyes one nose and still dont really think about it...You are already a couple-three months into this ordeal, a week or so to your implant date, and give it four weeks give or take after that to begin to forget it is there. 

Once the pain if any goes you may still need to get used to sleeping with your new settings, they can adjust these things, it might take months to dial you in, the ideally no need to do that can use the same settings on number two and three and so on.

I have not formed an opinion on MRIs, I am told not to, despite the folks here that say older pre-mri-safe pacers are safe, many facilities are not going to gamble they probably have polcies in place that may take decades to change those policies even if the pacer vendors say it is okay, will see what the future holds on that topic.

Your dentist is going to ask about or want to pre-medicate, talk to your EP, I have had some that said yes some that said no, but if you dont know the dentist might send you home to come back another day with the answer...

yes, definitely a button up shirt not a pull over at least the one you want to go home in. the general rule I know is if you get new leads you spend the night, since this is number one, plan to spend the night, bring some pajama bottoms for being around in the hospital.  You will be wired up with an EKG and some sort of radio so they can monitor you constantly, you are on the cardiac floor so bland boring food, surgery is a breeze in and out, sit in the room dont get much sleep that night but time passes quickly, go home the next day.

A few days/weeks after you will go back to check the area for infection, they might "interrogate" the device again (roll the special laptop like box over and talk to the device).  Ask for your copy of the printout.  May or may not see the doc on every visit, should have another visit a few months after that (interrogate the device make a printout for the doc, get your copy too) and then perhaps go once a year for several years until it is time for number two.  Some health plans/and or docs will provide some sort of take home box that they can check on you between appointments, YMMV.  Ask the doc questions about your settings (and/or to explain the printout), if they wont sit down with you and answer questions, get another doc.  Know your lower and upper limit (settings they program into the device), if at any time you are freaking out, take your pulse for a full minute, dont cheat.  Realize that you are still alive and your heart is working just fine and since you know your upper and lower limit can confirm it is in that range.

Thanks Dwelch

by WiredandTired - 2017-05-17 07:48:03

Man, you guys sure have been through it! I have gotten more information here  - FUGGHEDDABOUD COMFORT! - than anywhere.  All of your stories are like little nuggets of wisdom that help control freaks like me, who need to soak up all of the information, sponge-like, instead of the blissful ignorance some of the lucky ones seem to be able to pull off in life. I wish I had more of that....whatever that *thing* is that let's someone roll through experiences and take whatever comes.  Yeah....so not me.

I got an alert this morning in my email that new information was on my hospital portal. There it is in black and white: May 25th 3:40 pm.  Surgery.  It also says I'll be getting a dual chamber pacer. I'd love to know the differences between single and dual etc.....and frankly, why I need two leads.  One seems like more than enough.  In fact, I'm willing to take half of one....I don't wanna be a hog ;)  I'm kidding of course.

Dwelch, the MRI thing is a concern I have.  If my ticker issue weren't enough, they also found a microadenoma on my pituitary gland, incidentally, when they were trying to figure out my arrhythmia.  So that sucker will need dealt with too, at some point.  I dunno how you look at brains without lots more MRIs. They are benign things, so no cancer worries but can cause other issues like eye problems etc so they can't be ignored.  So we'll see about that one.

I AM worried about what caused my sick sinus syndrome.  So many of you guys were crazy young when you got your first one.  19, Dwelch? Wow.  I can't be the only one who felt like some deep dark hidden heart disease is not showing up in tests and I'll drop one day eating my powdered eggs and turkey bacon.  I was healthy as hell!  I too, was one of those people who saw a doctor probably 3 times in 10 years.  I wasn't ever sick.  What happened?  I'm not in my 70s so "wearing out" seems like a sketchy answer to me.  Maybe, I'm wrong I dunno.

When I woke up this morning, I pressed the heart rate button on my fitbit, like I do a lot these days, and it was 48.  It'll be nice to feel normal rates again and actually have some energy.  So (rambling too)....I'm mentally preparing myself.  I don't do well with the unknown.  In general, I'm not a weenie and can take pain and all of that, but I will worry myself into the dirt. IN. TO. THE. DIRT..........That's my superpower.  I got gypped.

Thank you all again.  Off to Google the crap out of "dual chamber"....

By the way - I'm Lori.

dual and single chamber

by dwelch - 2017-05-17 10:41:33

TraceyE is on number 5 as well and says she is 50 so doing the math would have had to start off around the same time I did somewhere in the 1980s...If really lucky could even have had them from birth but I doubt that, the pacers from the 60-70s were probably the size of the babies head.  And the battery life was much shorter than today.

So I know what I know about mine again a wealth of info here.

When your heart is too slow or fast or uneven or I imagine some longer list of things they only need to control the atria, the small chambers on the top, then the signal goes through the heart to the ventricles and they beat at the right time based on the pace from the top.  If you have a "heart block" or "complete heart block" or "level 3 heart block" that signal doesnt make it from top to bottom.  Based on your belief system, science, religion, other, many/most/all (I dont know the percentages) manage to survive as the body still runs the lower chambers just not necessarily in sync.  What a dual chamber pacemaker can/will do is in addition to any desires to control your overall pace, the pacemaker makes that electrical connection to the lower chambers as well and runs them in sync so the heart works normally.   Perhaps there are other conditions where they need to sync the upper and lower or in some way fix the lower.  But a dual chamber means they need to control the lower and either monitor the upper (in order to control the lower at the right time) or also control the upper.   A three chamber which I have now also called bi-ventrical I have one lead on the top, and one in each ventricle, this way they can bang each ventrical separately and even more control the timing, with one lower lead it drives both but physics happens the signal takes time to cross the muscle across the heart, so the far ventricle is a litte bit behind the one with the lead.  And my EP says there are four chamber pacers to...Wonder if there are any of those folks here, lots of electrical problems if you need one of those, but in the last few years the more than two lead pacers have moved from experimental to available mainstream.  not something you need to worry about.  dual chamber ones have been around for decades.

They will in any case set the overall pace to be within some limits, if 40 something is your normal depending on your condition you can and SHOULD ask them what they are going to set your lower limit to, and why.  They might bump you up into the 50s or to 60, which will take some getting used to, trying to sleep, etc.  I was young and less sensitive to such things but a number of years ago a doc I basically got rid of bumped me up 5 or 10 bpm and I had issues getting to sleep for a little bit...You CAN go back in and have it changed, perhaps even expect to over the first year, get that thing dialed in, keep bugging them if you cant sleep or feel weird things, some percentage is mental but some is physical.  I cant sleep since you put this in, I can no longer walk up stairs since you put this in, when I do X I feel Y, there are so many adjustments now.  Some folks feel the rate response if they have that feature and dont like it some folks like it, I dont think i would like it.  One person talked about a nighttime vs daytime setting, I dont think I would like that I want my lower limit the same all day, my going to bed time changes that would mess me up.

If the doc is not willing to work on getting this done or answering questions, fire them, leave them move on, whatever term you use, dont worry about their feelings, your life and well being is more important than their feelings they have other patients coming and going.

I am not saying that there is a long list of folks here with every condition and can exactly explain from a patients perspective, but the basic sub-topics of heart block and dual chamber, my case three chamber which is something you dont need to worry about for 20-30 or so years.  (upgrade from a dual chamber a few weeks ago).  there should be a long list of single chamber patients here too, but if you are dual you fall into that group.  The surgery is the same the visits are the same, the tests during the visit are different, now that I have a three lead there is an extra test or two they do.  The tests make you feel strange for the few seconds they do it, you may have one in the hospital before you go and there may be some pain there, but by the next one there shouldnt, one feels like someone is sitting on your chest and you cant breath, the other they run your pace up and you breath heavy, then they put it back, may feel like they didnt, but they did.  May be other tests, and hopefully you have a good tech that warns, you but at your age you will see techs come and go you might even retire a doctor or two if you stick with them long enough.

They can do CAT scans, xray instead of magnets, old fashioned tech (just living on the planet we are bombarded with xrays constantly, granted some medical xrays are more than a weeks or months dose, what are you going to do instead, exploratory surgery?  is that safer?).  

Maybe you can (YOU SHOULD) work with the doctors in the next few weeks your pacer is probably on its way already and/or they may have already prepared it for surgery, the logs on mine (from the printout I asked for) showed it had been powered up by my doc a couple-three weeks before.  Despite that get your two docs to talk or be the messenger, I have this other thing, might need MRIs, do you guys have MRI friendly pacers, what are the pros and cons, do you have a MRI friendly pacer MRI machine.  What are the pros and cons.  At the end of the day, as you know from how you feel the last few weeks/months, you need to get this pacer in and get that DONE, check the box move on and then deal with the other thing.

This could be your thing, you could be back here in a month or two helping other folks out, hey that fear you had, aint no thing I used to worry about those kinds of things, the only thing I worry about today is the pad under my bra strap and/or my seat belt...Everything else is golden...Took a three month vacation from life, now back at it, back to normal, dont have to live on the couch anymore...

David

Dual chamber

by WiredandTired - 2017-05-17 11:01:27

Thanks (again!).  I think I understand now.  :)

causes

by Tracey_E - 2017-05-17 17:01:01

Mine is congenital so I always knew one day I'd be paced. Now kids with my condition (complete heart block) are paced as early as a day old, but in the 70's kids only got them as  a last resort. Sometimes it's caused by surgery, infection, medication but more often than not there is no known cause. Electrical problems are unrelated to arterial problems, so it's ok to eat real eggs lol. 

We may only need one lead, but they almost always do two because 1) it provides more information and 2) often we end up using both eventually anyway. I use the ventricular lead for every beat, the atrial less than 2%, but it does kick in occasionally. It's the same surgery either way. 

I'm the same way with information, tell me EVERYTHING! I may not like it, but if I understand it, I can accept it. Ignorance is not bliss for me, it's stress!  I need to know how things work. 

There are some mri-compatible devices out there but they have some limitations (there is a trade off to get mri) so discuss with your doctor if it's a good option for you. The biggest drawback is at least one of them has an upper limit of 150, which may not be high enough if you are very active and need the boost from the pacer to get your rate up. (an aside, a common misconception is the heart can't go faster than the upper limit. The heart can go as fast as it wants, it will only PACE to the upper limit)  Also, you can't go just anywhere and have an mri, there is a protocol and you'll need to find a facility that can do it. That said, more and more hospitals are safely doing mri's on regular pacers so having a regular one doesn't necessarily mean you can never have an mri. It's a discussion to have with your doctor. MRI has been tossed around a few times over the years with me. We got by with CT or ultrasound instead. So far, it hasn't really been an issue.

congenital

by dwelch - 2017-05-17 21:38:00

Was interesting when I first found out about this in the (math)...late 70s early 80s, they didnt know what caused it, even 10 plus years later.  Then when facing being a dad, asked one more time, all of the sudden they knew, another 10 years later, some first year doc in an unrelated field was excited to see me when he saw my chart as he remembered that question on the boards, your mom has lupus?  Nope but happy they know what causes it, are checking infants in the womb, and teaching you this stuff...

My mom thought for two decades or more it was because she had a moment of weakness let them knock her out with twilight sleep during my birth (something they dont do anymore AFAIK).  In the end yes it was something about her during the pregnancy but not something that was her fault, and fortunately not something I can pass on...

Same story with lead removal went from cant (well perhaps open heart?) then as my current doc says the barbaric practice of a special knife that slides down the lead, to todays laser solution.

Who knows as disturbing as it sounds to me they may very well try doing wireless charging on these things in the near future.  I hope they are smarter than that, but will see...

They had an "atomic" one which I cant see as really being atomic but it was supposed to be a 80 year battery life or something. 

www.implantable-device.com/2011/12/24/medtronics-atomic-pacemaker-1970/

Hmm, I guess it was actually atomic...that was pretty stupid...

Anyway TraceyE's comment reminded me that I asked what caused it early on they didnt, know and didnt think to ask for another 10-15 years...And then they did.  But when I asked before they didnt know, well in the last X years they figured it out...

Good luck...if you have any lifting to do or work that need both arms be doing them now, moving the furniture around for vegging out, groceries, whatever.  OH, calling insurance to make sure it is covered...did they get the proper approvals, etc...

Let us know how it goes.

Just an aside....

by WiredandTired - 2017-05-18 07:12:40

Once again thank you for all of your invaluable information and support. Insurance is covered and I'm gonna make sure everything is ready to roll for awhile while I heal.  Luckily, my 25 year old daughter lives with me and hubs helps a ton too. The only probablem I havent solved yet is that I have a 14 year old dog with congestive heart failure (one of the loves of my life) who can't make it up stairs. To "do his thing", he needs to go down 4 deck stairs, which he does fine, but I have had to carry him UP the stairs for the last few years, several times a day. Down, he can do. Up?  Not so much. Obviously, I won't be able to do that because he's about 40 lbs. Still working on that one, for when my family is at work. He won't do ramps.  Scared of them. Total weiner.

But on my mind even more is.....can arrhythmias like SSS (See?  I'm using the lingo now!) be inherited?  My kid (son - age 28) has recently made an ER visit and had another episode of what he describes as "feeling like if he doesn't really concentrate on breathing, manually, he'll stop breathing when he goes to sleep at night".  Along with "twinges" or tightness in the chest, and always feeling like he needs to take deep breaths to catch up the slow feeling in the breathing.  I too have/had this.  It's important to note that I have a history of anxiety and suspect he does, as well....which, as I'm sure you know...can cause similar symptoms.  The ER doctor told him he probably had an anxiety attack.  But it's happened several times.  Now, with my diagnosis, it's making me wonder.....

He's a healthy guy with no heart history.  Then again, so was I.  (Not the guy part...heh.)  My father had heart issues but not arrythmias.  He smoked like a freight train for 2000 years, and ended up with a heart attack in his early 50s, emphysema and ultimately lung cancer, but early heart history, for sure. Any chance my kid could get this thing from me?

genetics

by Tracey_E - 2017-05-18 13:39:57

Most random electrical problems are not hereditary. My condition is associated with the mother having Lupus. My mom does not, so my cause is still unknown and considered to be a fluke. Did you ever have two similar gadgets- phone, tv, ipod, whatever- and one runs for years without issue and the other fizzles the week after the warranty is up? That's us, the perfectly nice tv that short circuited. Most of us are otherwise healthy and have no other heart problems.

A visit to a decent cardiologist for your son might be a good idea, maybe a sleep study also. Hopefully it's nothing, and odds are what you have is NOT hereditary, but better why wonder when you can know. My cardio did work ups on both of my kids just so we'd have a baseline on them. We didn't expect to find anything, and we didn't, but he was curious and I felt better knowing for sure. 

Will your dog walk assisted with a towel? You'd run it under the dog and hold the ends so the back legs are supported. If that won't work, you're going to need some help with that for a few weeks. 

same here again

by dwelch - 2017-05-30 04:09:25

Like TraceyE and I are twins or something.  My mom didnt have Lupus either, but that isnt the only autoimmune disease that can cause congenetal heart block.  Since they didnt figure out what caused it until well after we (TraceyE) and I were born like couple decades, cant go back and test mom to see what was going on then.  But for kids being born today they can, I thought I read it can be something temporary in the mother during the pregnancy, but too lazy tonight to re-research it...

You are becoming a pro at this now, talk to your doc, and maybe have him see your doc or get his own, maybe they will agree maybe they wont.  Even if it isnt hereditary doesnt mean he cant have something worth checking out.