Hey guys I'm new lol

welcome!

by Tracey_E - 2017-04-09 22:21:48

I was 27 when I got my first one, also. 

You can- and should- use  your left arm now, just don't lift anything heavy and try not to raise it overhead. That's for 4-6 weeks, depending on your doctor. Other than that, use it normally so your shoulder doesn't freeze. 

Getting used to it was a gradual thing for me. The better I felt, the more I healed, as I found myself with so much more energy than before, no more dizziness, I spent more time enjoying life and less time thinking about the hunk of titanium in my chest. 

My rate was in the 30's before so it more than doubled when paced. It took a good year before I didn't regularly feel like my heart was racing. It wasn't racing, it's just that normal was so much faster than I was used to. 

I found it helpful to sleep hugging a small pillow. That kept me from rolling on my sore side in my sleep. 

Know that emotional healing is just as important as the physical. Adjusting sometimes a problem, especially when we're young and find ourselves with a cure that's typically for patients three times our age. Knowledge is power. Learn all you can about your device and condition. Ask a lot of questions and be an active participant in your care. 

Know that it's normal to take a few tries to get the settings just right. If you don't feel right, esp on exertion, call and ask to be seen. They start us with a good guess. Once the heart gets used to being paced and the leads settle in, they will adjust. Often, this is not enough and it takes some time to fine tune it to our needs. No two of us are alike so settings are not one size fits all.

If you have questions, ask away!  

Welcome

by Hamsquatch - 2017-04-09 23:12:30

Good advice from Tracy, the only thing I will add it to restrict arm movement while sleeping keep a t-shirt on and keep your PM side arm tucked into the shirt. 

Cool thanks guys....another question

by Redeyejedi4206 - 2017-04-10 00:10:28

Thank you guys so much and wonderful advice tracy, also I wanted to put this out there I'm an avid partaker of the medicinal herb, both dry and edible, was wondering everyone's advice on that?

Also...

by Redeyejedi4206 - 2017-04-10 00:13:56

Is it normal for them to set my pm at 70? Cause I know a normal heart rate is between 60 and 100 right?

70

by Tracey_E - 2017-04-10 08:11:59

Why did you get it? 70 is a little high for a minimum rate, but it's not unheard of. 60 is more typical. That said, if you feel good, then your numbers are right for you.

If you have av block, then the minimum number is irrelevant because you don't need the pacer to keep your heart from getting too slow, you need it to make sure the ventricles beat when the atria does. With av block, the pacer is completing the broken circuit, not setting the pace.

Minimum rate

by LondonAndy - 2017-04-10 16:08:44

Just thought I would mention: I'm 51 years old now, had the pacemaker inserted about 2.5 years ago following complications from heart surgery, and my minimum is set at 70bpm too. I assume it is because I am a bit over weight?

YOU ASKED

by BOBJ - 2017-04-10 16:13:41

Casey,

As far as the smoking weed. Yes it is not good for you and might even be part of why you have your condition.

On the other hand I advocate legalizing drugs. Not because I want to use them, but because taking the money out of them is the only way to stop the drug trade. If you put the federal government in charge of handling and taxing drugs they would ruin this black market industry.

The problem then becomes what fills the vacum for the drug cartels? Would the shift in their profit source be worse? Probably.

Welcome

by TBrous&Chip - 2017-04-11 19:22:33

Just passed my 1st anniversary with PM. Started with settings at 60/130.  Now 60/150 to allow me to exercise harder.

Follow what others have said here.  Do move your shoulder some so it does not freeze up.  

Probably psychological healing harder than physical healing.  You have to learn that a PM is dependable and will be there when you need it.

Good luck.

dont worry about it

by dwelch - 2017-04-13 02:35:36

The thing is there to make you normal.

It takes a few weeks to get the muscle part dealt with, I am on pacer number four going on five soon.  I tend to lock up my shoulder for the first so many days so it doesnt move the incision, and end up with really painful muscles, no doubt the wrong thing to do.  The pacers are so much smaller now than 30 years ago, so that has made it easier, plus I have done this a few times.  but after a few weeks you can begin to start going for full mobiity of the arm/shoulder.  and believe it or not you will most of the time forget you have one until you bang your shoulder on something which an really hurt. metal inside, something hard outside, like pinching your skin with pliers...Eventually subconsiously you will begin to protect yourself from that even though you dont remember you have a pacer and bump it on things less and less if at all...

As far as the change of pace, I was in the 40s at rest and 30s sleeping, complete block heart was banging away and I could always hear it in my ear, so the pacer made that go away, so it was empty and disturbing 19 years of feeling every beat to nothing.  was checking my pace constantly to see if my heart was still running which obviously it was I wasnt laying on the ground.  It also took some getting used to sleeping again, not just changing how I slept to avoid being on the pacer but the higher rate.

No reason to be afraid to negotiate the rate with your doctor, I think I had it lowered to 50 beacause at the time it was in units of 10.  One of the later ones I think they set 55 and a doc I didnt like and dumped quickly set one to 60 which messed with my sleep for a bit but actually with the next doc just kept it there.

That is a weird thing when you go in annually (eventually) for your test they can mess with your rate during testing which makes you breath faster or feel like you stopped and someone is sitting on your chest.  It is annoying of they dont warn you, but you get used to the fact that they can do that, and over time they might change your lower and upper limit, but you can talk/negotiate that with the doc.  If not get a new doc, if for any reason at all your doc is not working with you and instead treats you like a lab rat, move on find another...

I got my first one at 19, with my condition today they start much younger at times right after birth.  You like me will have several pacers over your life, just how it is.  They never last as long as advertised, just part of life.  find a good doc, if you dont move or change insurance you might be with that doc for a significant portion of your life, you might even see them retire, this is a rest of your life thing.  For most of this time you will be the youngest patient in the waiting room and possibly the youngest patient the doctor has, although nowadays they may have more, but still you will be in the younger group.

I have a two lead so the lower chambers are paced.  In about 20 to 30 years of pacing with a two lead your enjection fraction may start to go down, after 20 years maybe even sooner they may start or should doing echos (assuming technology doesnt have some dramatic changes over that time) they are checking for the abnormal pacing that the lead is doing, it is not pacing from where your heart should normally be paced from the inside middle.  I am at 30 years of pacemakers and my EF is now low enough to move from a two lead to a three lead, so I am only a few years into pacer number four but am getting a new device and another lead in a few weeks.

They broke a lead on my first replacement, so I have an unused one in there, this could happen to you too, over time you might need a new one from it breaking, but they are much better at removing them.  As other folks here will say, find a doc that does like 100 removals a year, the local specialist (local could mean a few hundred miles depending on where you live, fortunately mine is in town and is doing the replacement and the new lead in case we have to take one/some out).  You are hopefully decades from this.

over the 30 years the car seatbelt has been my number one pacemaker problem.  The pacers are much smaller now, so it doesnt stick way out anymore, so the belt does not rub it as much, I can now just used one of those fuzzy seat belt covers and that is adequate to prevent the hard edges of the belt rubbing on the inscision.

You can no longer climb power poles and hug transformers...High emf can confuse the pacer and it simply stops pacing until you are removed from the field.  this includes sub stations or power plants, both of which I was in in college on field trips not knowing I wasnt supposed to be there.  I never felt the affects but reading other posts, some folks here may have.  You can still use the microwave at the circle K or seven eleven (as well as at home) can watch tv, can use your phone, hair dryer, electric toothbrush.  99% if not 100% of the warning labels or stickers are lawyers protecting themselves from lawsuit, doesnt cost them much in  ink to paste a warning on the box.  If you work near high emf, you have a shake table in the lab, etc let some folks know that if you pass out near it to move you out of the field.  ideally your body will take over pacing an dyou wont actually pass out just feel funny, the funny feeling is what you used to call normal before the pacer.

Not supposed to go through metal detectors, I am told the detector is not the problem, you are just going to set it off and then it is a hide and seek wheres the metal game.  Tell them before you go through and they will wand you but not over the pacer if they are trained (again lawsuit protection mostly) they may pat yo udown, they may send you to a special room to pat you down.  All part of the fun.  Sometimes the special room gets you through security faster, ask the first person you see who checks your ticket you might get to bypass the whole line for the special room.  depends on the airport.  You might get stuck behind 5 wheelchairs and be slower getting through.

Ask your doc on the next visit which should be soon, about premedicating for dental work like cleanings.  Your teeth not all that far away from your major arteries going to/from the brain.  I have had a number of dentists and a number of cardiologists.  The good dentists should see you have a device and ask if you need to be or should be premedicated (take a handful of amoxicilion before the visit which the dentist office prescribes for you). I did it for a long time then was told I didnt need to by the next doc the pacer has been in there a while.  So before you end up at the dentists not able to complete that visit, get your docs answer and then before the dentist tell them you have a pacer and you need to be premedicated.

You wanted to know everything.

Ummm, ask for your copy of the printouts.  Sit down with the doc and walk through the printout, I am an electrical engineer so the volts and milliamps and milliseconds make perfet sense to me.  But EE or not ask about the lower limit and upper limit, did they change any settings and why.  Am I dependent or not.  Knowing what your limits are if you feel strange, esp this first few months, take your pulse, count out the full 60 seconds dont do the 10 seconds and multiply by 6 or vice versa.  If it is outside that range, then consider calling the doctor.

The estimated life on the printout is not that good of an estimate, when it says three weeks that is probably accurate-ish but one year in if it says 4 years left, forget about it...When you get to that 7-10 year range expect the phone checkups if you have those or the office visits to increase, hopefully your insurance company understands this need, some dont.  When the pacer voltage gets low enough the pacer will lock on 65 BPM, this is normal, it is a battery savings safety mode, you have months left to schedule an appointment.  they should be watching for this with the increased checks.  you are already years into this they can mess with my heart thing, so being locked on 65 is just another thing.  dont go to the gym, careful climbing stairs, use the elevator, your body is not reacting right because your heart is locked.  climbing stairs you breath really hard maybe your chest hurts.  hopefully within days or weeks you are in getting pacer number N+1.  I think on my first one the doc said.  Hmm, what are you doing next week...This was the same day I complained to a buddy, why have I been going in twice as often for the last three years I am sick and tired of this...

You might have one that is MRI safe or not, different opinons on this on this site, but know if the doc says you cannot have an MRI, and dont mess around you dont want it being ripped out of your body.

30 years four pacers they last 7-10 years for me by biggest problem really is/was the car seat belt and it isnt as much of a problem anymore.  I generally am back to work in a week or so, dont realize how much you use that left arm driving unti you cant or dont want to post op.  After about a month my shoulder is mostly working normal.  The devices have way more features every new one you get, might be smaller but they are pretty close to as small as they can be with the connectors dominating the size.  There is no reason to make them last longer than 10 plus or minus years.  I was able to get my old ones until now pretty sure they wont let me have this one, I think they are worried that if we get our hands on them we might hack them or something.  so much for my collection...quite likely you wont be able to get yours either...sigh.

This thing is there to make you normal.