Frequency of visits with EP

Hello,

I am 38, have CCHB, and have been paced for 21 years.  My pediatric EP retired about a year ago, so I was moved over to the adult clinic and am working with a new EP.  I have seen him twice since switching doctors, but do not have another appointment scheduled and was told by his office that I will only be seen if I am having symptoms or if something unusual pops up on one of my remote pacemaker transmissions.  Is this normal for adult care?  I was seen by my pediatric EP at least once per year.

My current EP is an expert in lead extraction at a large hospital and has a high patient satisfaction rating.  He spent a lot of time with me during my two appointmentsand answered all of my questions.

Thanks!


8 Comments

In Office device checks, seeing the EP

by Marybird - 2020-02-16 15:18:45

I've had my dual chamber pacemaker (for sick sinus syndrome-tachy-brady) for 8 months now, and had my last in office check with the EP two weeks ago. All was well (except that he increased some meds I was taking due to ongoing high blood pressure issues). He informed me (that if this was ok with me, he said, why not?????!), he would like to see me once a year, and the office scheduled another appointment for January 2021. Otherwise remote checks will be done on my pacemaker every 3 months, I was informed. I also have an A-fib/atrial tachycardia alert on my pacemaker so I gather in the event of a significant episode (not just the little quickie "flutters" I sometimes get, LOL), they would be notified, so I figure there is no need at this point to see the guy any more than annually. Yeay! 

I'm under the impression this is pretty standard for people with pacemakers and remote monitoring capabilities with no problems or issues. My sister also has sick sinus syndrome with a pacemaker, and after the initial post implant visits and assessments she sees her EP once a year with remote monitoring at three month intervals. I think she said they would call her before her next annual appointment to schedule one.

It seems to me that in the event a patient has ongoing issues, either with pacemaker or health problems, he/she may be scheduled more frequently than once a year (maybe every six months, quarterly, whatever is indicated) but that is an individual thing.

Might it be possible they plan an in office device check once a year for you, (but didn't mention it to you or something), and figure you will see either the pacing rep and/or a PA or nurse practitioner at the time of this visit? Just guessing here, but you could ask them about it. And of course should they pick up anything concerning on your remote monitoring reports, they would contact you about it.  In your shoes, I think I'd ask them about the frequency (ie, if, and when) of in office device checks, and oh, by the way, which practitioner or who would you be seeing at this check?

 

Marybird

 

 

 

 

 

 

What's the frequency, Kenneth?

by AgentX86 - 2020-02-16 16:48:46

I saw my EP every few months (Aflutter, with significant symptoms) before my pacemaker was implanted, every three months for the first year after, then six months for a year, now once a year. If course, if I have any issues I'll see him sooner. I still see my cardiologist every three months.

I'd think with CCHB, they wouldn't be so loose, though.

similar situation

by Tracey_E - 2020-02-17 10:08:27

I also have been paced long term for CCHB (53 yrs old, 25 years paced). I used to only go when something was up also. Then one day they realized that my pacer folder was giant and my regular file had been moved to storage and I was no longer in their active patient database. After that they started scheduling me once a year.

I switch to an adult congenital clinic a couple of years ago it's like night and day because patients like us are the norm there, not the rare exception to the geriatric crowd you see in most cardio/ep practices. I go once a year. They do echo, xrays and bloodwork. It's good to keep an eye on heart function and condition of the leads. My old doc never did any of that unless something was going on. 

I think the typical adult ep practice sees us as "fixed" so they are lax about follow up. I was ok with that for a long time, but now I prefer the more specialized practice that keeps a closer eye on things. I already know I'm very healthy right now, I want to make sure I stay that way. One practice fixes problems as they come up, the adult congenital practice is more about prevention and monitoring for early signs of problems. Different attitudes.

once or twice a year

by dwelch - 2020-02-17 12:13:26

32 years paced 52 years old.  CCHB as well.  the first year after a new pacer of course is few weeks, then few months then 6 months.  after that it is normally once a year, then depending on the tech of the day and the doc and insurance it might be 6 month visits near the end, or lots more phone checks.  That has been the norm for amost all of that time for me across a number of doctors in different offices in multiple states.  I refused the take home box so my "punishment" is 6 month visits so I am on 6 month visits now.

If nothing else they should be doing an echo on you every year at this point if you are dual lead if biventrical then perhaps not, but starting around 15 years in or so they should have started that.  If not should be starting any time now.

I am hearing from this site though that in other countries (I am in the US) they are relying heavily on the take home box.  And I suspect that will become the norm, sadly.

If your new EP doesnt have you scheduled, then take that free time to shop around if possible.  

 

Hi

by Bionic Beat - 2020-02-17 16:44:33

As long as you are well, once a year pacemaker clinic visit and short 'hello, how are you' with the EP in Canada.

 

My EP of 30 yrs retired 18 months ago, I've seen two others in clinic and they are so different but the idea is that if the pacemaker has a few years left, you are good til the next 'mechanical' check.

 

Of course, if I am unwell, my GP gets in touch with them and an echocardiogram is done asap and issues solved.

 

I did have one pacemaker recalled and the EP called me himself to let me know about it.  So, as much as we dont see them often, they are on top of things from their end. Good to know.  

 

Best Wishes,

 

Bionic Beat

 

 

Thank you!

by barnet38 - 2020-02-17 19:59:24

Thank you for all of the feedback!  I feel that I should be seen in the office for an annual check up, and it sounds like that is a normal expectation based on your responses.  I know my insurance will pay for annual appointments and the remote checks, so I  will ask the office for another appointment.  I will shop around for a new doctor if the office will not put me on the schedule.

My pediatric cardiologist is retiring this year and will be transferring me to the adult congenital clinic at the same large hospital that my EP works for.  I think it will be good to have both doctors in the same medical system because it will be easier for them to access my test results and other patient information.

I have a dual-lead pacemaker.  I get my echo and EKG at the annual cardiologist appointment, and the results are shared with my EP.  I agree that it's a good idea to keep an eye on heart function.  I have never had x-rays or bloodwork done at this appointment, but that may be changing when I switch doctors.  Tracey - do you know what you get annual x-rays?

xrays

by Tracey_E - 2020-02-17 21:21:10

He said sometimes he can pick up on early signs a lead is going bad from the xray before it shows up in other tests. 

It's great that they are all in the same system! The guy I see is in a large childrens research hospital. They told me he sees 1/3 adults, but every time I've been there, I'm the only one in the waiting room who doesn't sit at the play table lol. 

Frequency

by AgentX86 - 2020-02-17 23:19:40

If you're counting the pacemaker clinic visits, I have two of them a year and I'm supposed to use the take-home box half-way between the clinic visits.  I need to go into the clinic twice a year to get my clock set for daylight time.  ;-) That's in addition to the once-a-year EP appointment (with echocardiogram) and every three months with my cardiologist (who keeps in touch with my EP).

You know you're wired when...

You have a maintenance schedule just like your car.

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I've seen many posts about people being concerned about exercise after having a device so thought I would let you know that yesterday I raced my first marathon since having my pacemaker fitted in fall 2004.