Getting a PM next week

Hello.

I found out yesterday that I will be getting a pace maker next week. Although I knew it was an option "down the road" it was still quite unexpected as my cardiologist kept saying I'm too young (50 this year). I know so little about what to expect. The information online just talks about after care and recovery time. My husband seems to think I can keep the bookings I have for 3 days later (I do make-up).

WHAT are the questions you wish you had asked BEFORE the procedure? What do you wish you'd been told BEFORE you had the implant? I'm a pretty upbeat "get on with it" person. However I find myself worrying and I'm a bit tearful (I don't even know why) I still don't know how much this is going to cost but I know it's a lot, which I'm struggling with as it would have been free where I am originally from. How often will I need leads or batteries changed and what does that cost? 
Would appreciate any practical advice and a little reassurance! Thank you in advance kind people.

 


11 Comments

Not enough information

by crustyg - 2020-01-10 16:48:15

Hi: you haven't shared your heart history so we have no idea why a PM might be needed, and this controls a *lot* of the questions that one would like to have answered.

In the UK a private top-of-the-range PM is about £12k - including the PM+leads, consultant time, room for a day in the hosp and time in the cardiac suite - and the first follow-up check and programming / tweaking of the PM 4-6 weeks later.  You can double this for the USA - minimum.  ICD will be more for the box, but since a plain PM is about £1-2k it's not a huge amount.

If all goes well you can be back at work the next day (no, I'm not joking, I was), again depending on your health.  Here in the UK there's a mandatory no-driving for seven days post implant, but it doesn't stop you working.  For some people who are unwell before the PM, recovery can take quite a lot longer.  But in general the positive effect on your cardiovascular system of the PM will surprise you as it aids your recovery.

Your leads should last forever, your PM box will last 5-8years unless you receive an extended life model (==bigger battery) which could last 14-15years.

For ladies it seems an important question is outside or beneath the pectoral muscles - beneath has a better cosmetic result but it's more painful and slower for recovery - and probably costs more.

returning to work

by Tracey_E - 2020-01-10 17:53:29

Do you know if it will be placed just under the skin or buried? Big difference in how you'll feel after and if you'll be up to working a few days later. Also, are we talking a client or two or working all day long? Three days might be overly ambitious. 

Putting it off due to age is one of my giant pet peeves. If we'd benefit from it, it doesn't matter how old we are. Every age needs an adequate heart rate to  thrive. I got my first one at 27, should have had it years before that but had a doctor with a similar attitude. One day my rate tanked and I almost died. I felt so much better with it that I was a little resentful they let me suffer when there was a relatively easy fix all those years. 

I still have one working lead from 1994, one was replaced in 2010. I've been through 5 devices but the current one is 3 years old and still has 9+ years left. Replacement is super easy. 

Cost, depends on your insurance. Do you have a deductible and max out of pocket? You'll probably hit that. 

Talk to them about placement. Depending on your build they can sometimes go a little lower and deeper than the typical placement (just under the skin, just under the collarbone) without going under the pectoral. It's nice to have it at least a little out of the way, it's more comfortable and it looks better. 

Do you know what your diagnosis is? If it's av block, any of them will do. If it's sinus dysfunction, then you'll want to ask what type of rate response you're getting. 

More info

by Brit in USA - 2020-01-10 21:24:12

Thank you for the replies. I realize my post was vague. I'm told it is sick sinus syndrome/ tachycardia. I'm in very good health, just shortness of breath doing things like climbing stairs, mopping the floor etc. 2 different 2 week zio patch tests showed hr ranging from 34-215. The most recent one showed several episodes of electrical signals resulting in no beat for 2-3 seconds (arrest?) I'm sorry I have no cardio vocabulary yet! I'm making sure that facility is in network for my insurance. 

It's so interesting hearing some people are experiencing ongoing pain at the site and others none. Pain isn't even something I considered. At this early stage I want to ask the right questions before hand. Hearing the larger (longer battery life) devices are more cumbersome. I'm such a newb!

Welcome!

by ar_vin - 2020-01-10 22:06:37

First, welcome to the club you didn't want to join. :)

You've already got a couple of great responses from very knowledgeable and helpful folk.

My two cents: ask for and get the sub-pectoral implant. It might be a slightly longer recovery and a bit more painful at first but it's much better longer term as it will be buried under your pectoral muscle.

Even if you can get right back to work and feel fine, plan to take a few days off and start slow. Two restrictions you'll face right away: no lifting arm over head and no lifting any heavy objects for a few weeks. Driving in usually fine after a week, maybe even earlier.

Allow your body to adapt to the PM and stay as active as you can. No jerky movements for a few days.

You'll bounce back very fast but allow some time to heal.

 

Let us know how you get on

by IAN MC - 2020-01-11 10:00:30

Hello :   I am a Brit living in the UK  ( we used to shoot deserters .. why did you do it ?  Was it something we said ? )

I, too , have Sick Sinus Syndrome and want you to know that :-

- the PM implant procedure is a piece of cake, I had it done with just a local anaesthetic , returned home in the late afternoon and on Day 7 drove 600 miles to the South of France on holiday.

- Once I had the settings adjusted I found that life was moreorless normal.  I play tennis 3 times a week , run, play  golf , annoy my wife  (  I never apply make-up to anyone though ! ) . I travel frequently and even visit the USA occasionally .   So your life will only change for the better.

-  You need to remember that those cardiac pauses WOULD get longer eventually probably leading to you fainting . A pacemaker is the  only solution , there aren't any drugs which can reliably raise your heart-rate . You do definitely need a pacemaker.

This site is really useful but always bear in mind that the vast majority of PM recipients just carry on with their lives without any physical or mental issues whatsoever.

Best of luck with your implant and let us know how you get on .

Ian

Choice of pacemaker is critical for you

by crustyg - 2020-01-11 10:32:26

With SSS the big challenge is getting your heart-rate up to something sensible for your muscular efforts - hence why climbing stairs is a problem.  The blood supplied per unit time from your heart is controlled by several factors, but heart rate is the easiest to control.  The challenge then becomes how does the PM know to increase your HR? All modern PMs with a rate-response feature have an accelerometer inside - exactly the same chip that tells your smartphone which way is up.  As you move around this provides a movement signal that tells your PM to increase your HR =>more blood supplied, BP stays up, muscles are able to contract without producing lactate and you feel ok.

If you're a keen athlete this may not be enough for you.  A) you will need your PM tuned for you (lots of little settings to control it) and B) you may need something other than the accelerometer to tell your PM that you need a faster HR.  This comment will start a flame war, but IMHO you need to be an active participant in the choice of your PM - sweeping generalisation time - BostonSci are very good for athletes, others less so.  The costs involved may be sigificantly different.

Crusty

by IAN MC - 2020-01-11 11:54:36

I believe that the choice of pacemaker is ONLY critical if you take part in endurance activities such  as marathon running / serious cycling,

For the vast majority of PM recipients the make of PM probably doesn't make a scrap of difference. 

If your sinus node malfunctions I don't think any pacemaker is as physiological as it should be when it comes to response to exercise but accelerometer-only makes such as Medtronic and St Jude are perfectly OK for everyday living.  It is only if you are mad enough to do endurance exercise that you spot the difference  I.M.H.O.

The original poster gave no indication  of her exercise requirements, maybe she is a triathlete ..... in which case choice of PM would be critical .   If not, whatever the Dr fits will be just fine.

Ian

AV block

by Pacemaker_Sally - 2020-01-11 13:19:00

My dual chamber PM was placed under the skin and after 3 months, it is settling in nicely. Other than the scar, my pecs look pretty even. 
I also need a PM for AV block - mine are 5-second gaps - and the peace-of-mind provided by the PM is priceless!

Great info

by Brit in USA - 2020-01-11 20:12:31

Thank you all so much for your input. I'm finding this information so helpful. Great to hear from recipients rather than Dr's. For the record I am not and never will be an athlete, although I am looking forward to getting fit again in due course. There was mention of visits/check ups how often are they trpically. Also is data being stored/sent anywhere? Or is that something I read about "plugging in" once a month. Sorry I just don't know any of this yet😊

I am feeling much better and haven't she'd a tear since my first "wobble". I'm thankful it's been caught and we are being proactive. Also delighted to have found this group. Appreciate your help and humor!

welcome

by dwelch - 2020-01-11 20:13:10

back to work the next day is the exception not the rule.  some things you can do within a few days some take weeks.  things like driving, washing your hair with both hands, sleeping through the night, sleeping on that side, etc.

You might spend the night, I would expect that for a first device, but will see.  then a few week checkup an few month checkup maybe a 6 month checkup then annual checkups after that, meaning visiting their office.  Very likely you have a take home box if you choose to and there may be checkups scheduled using it during the course of the year.  

10 years give or take a few another device, and the process repeats.  The second through the Nth devices though you have at least been through it before and although it was many years before and you forgot a lot of the details because really it was a matter of weeks almost a decade ago, you have still been through it.  If there are no issues (need a new lead) then ideally you are in and out same day for second through Nth devices.

I have a three lead device, my fifth device.  First one was put in 32 years ago when I was 19, Im about your age now and we are considered young with respect to pacer patients, but there is nothing wrong with that.  As Tracey_E points out there is no reason to wait if you need one you need one get it in there.  Ill add if you dont you dont.  I have one working 32 year old lead, one broken 32 year old lead one working 25 year old lead and one working lets say 3 year old lead, maybe 2 cant remember.

Leads are not something that you normally replace, usually just the pacemaker itself.  They essentially unplug the leads plug in the new ones (there are screws that keep them in place so the plugs dont come out), sew you back up and send you home.   No big deal.

The interrogations in the office are no big deal they put this wand/mouse looking though over your device, use a laptop looking thing that is connected to it which will talk to the device, they check the leads by performing tests, that you WILL feel, but its no big deal if you read this and other posts about what to expect.  one may feel like an elephant is sitting on your chest, it only is for a few seconds.  then another that races your heart and you breath harder, its not all lead tests, but anyway.  after 32 years it still feels like they didnt put the settings back, but they did. Ask for your copy of the printout, depending on the brand, version of software, what the tech actually printed (how minmal of a summary) it may or may not show all of the settings, the before and after and what changed.  My current device and what they print for me no longer has the before and after, so I just have to go with what is shown.  

The techs are generally not pacer patients some are better than others and tell you somethings going to happen others are more cruel and just start jacking with your heart as if you are a lab rat.  I have learned to forgive and forget and move on.  With the exception that if the doc treats you like a lab rat, jacks with settings, refuses to put them back, refuses to explain why, it is time for a new doc, dont be afraid to try another doc, cant worry about their feelings.  gotta worry about yourself.

You should be able to do the things you did before, perhaps do things you couldnt do before, or can maybe do things you did before better.  It makes us normal not fragile, without the pacer we are fragile, with it we are not.  Yes there is a bump and a scar and depending on the surgeon each device may get its own scar or they may open up right over the old one.  It is what it is, a small price to pay.

Other than welding and being near very high power (generators at a dam, walking around a sub station, working on power lines) all the stuff you use today, coffee maker, hair dryer, cell phone, lawn mower, etc you can continue to use.  

You may have a period (weeks/months) of anxiety.  Despite assurances here, fear of using electronics that have warnings or that you have always used but might be afraid of.  this is perfectly normal.  

You will want to physically protect the area, you cant really hurt the device, but you can hurt your skin/body literally it is a hard metal surface and if you bang on it from the outside the skin is what takes the damage. so protecting it be it using pads or whatever or learning to block the kids or grandkids arms and legs and knees and elbows and heads when the climb on you, navigate hugs from adults as they might bump it too.   this will come naturally, but is part of it, will become subconcious.

you will forget the device is there.  Like your belly button and your middle toes, you know you have them but you just dont think about them until you bump one on something then you shortly forget about it again.  The pacer will be the same way.  

I started this journey before the public internet, long long before this website, it was decades before I communicated with someone else with a pacer and have learned perhaps more than taught at this site.  So much info and experience here, that would have made my journey easier.  Okay I was a teen I knew everything, old people were stupid, so maybe I wouldnt have learned anything...

Implant done!

by Brit in USA - 2020-01-19 15:42:58

After many phone calls going around in circles with my insurance company my proceedure was finally approved. I had it done on Friday. It went well and an hour later I was awake and feeling great. I let it be known to everyone that I wanted to go home. However I ended up staying overnight in because the "rep" couldn't come untill the next morning.

I have completed and utter sympathy for my room mate and everyone else on the ward but boy that was an eye opener. Most were very elderly, in very bad shape. From nurses comments and questions it was aparent that several had dementia and were incontinent. With all of the noise, alarms, bi hourly checks, loud staff members, groaning patients and bright lights I got 0 sleep. I felt guilty talking up a bed. I spent hours walking the corridors and scrolling social media.

On Saturday morning the rep ran the first check. All good my Eudora 8 DR-T had been pacing me 80% of the time. I discharged at 11am. Got home and had a wonderfully long nap after which I felt up to meeting friends for dinner.

I'm still tender at the incision site but feel very thankful and optimistic. I see my cardiologist on Thursday. 

 

Thank you to everyone who answered my questions and welcomed me to the club.

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