Teenage daughter preparing for possible pacemaker this summer

Hello,

We have been in the process of figuring out what is going on with our 16 year olds heart. Currently on our 3rd opinion and so far the first two electrophysiologist have agreed that a pacemaker is needed. She is asymptomatic and stable. We happened to find out about her low heart rate at a well child visit. The dr dont have an official diagnosis as she doesnt seems to have a complete heart block but it is too sporadic to be benign. She is a cheerleader who does stunting, loves every rollercoaster ride, very athletic and also loves horse riding. My husband and I are preparing to talk to her about the possiblity of her having a pacemaker implanted this summer. We do not want her to feel fearful or worried.  I dont know how best to prepare her mentally or even prepare myself mentally for what this would be like. If there are other mamas on here who have some tips or would be able to share their experience with me I would appreciate it. Or even any teens who have had a pacemaker implanted who would want to chime in with encouragement or their testimaony of what this journey has looked like. We are in uncharted waters and would really appreciate some positive feedback!  Blessings,Andrea 


10 Comments

Lots of experience in the club with a PM from a young age

by crustyg - 2021-06-15 15:16:24

A properly configured PM is no bar to any athletic/sporting/normal life.  There are a couple of exceptions - heavy contact sports such as rubgy require additional PM protection but apart from that (and no arc-welding either!), it's pretty much live life to the full.

The mental adjustment takes time - a couple of months at least, and then it's all about focusing on the future.  If the EP-docs are recommending a PM for looong pauses then listen to them: there is a *small*, but very real chance that one of those pauses *could* become the Ultimate pause...

Make sure that you discuss placement: it's possible to 'hide' the PM under the chest muscle, but your EP-doc needs to be clear that's what you want.  It's more painful, at first, but many ladies feel that it's cosmetically far better.

Best wishes.

"It's more painful at first"

by ar_vin - 2021-06-15 16:44:10

I asked for and received a sub-pectoral ("under the muscle") PM implant. The pain was minor and recovery pretty quick. Almost three years later I still feel some achiness in the area of the PM especially after a hard kettlebell workout for example. But most of the time I forget that I have a PM.

Your daughter will be fine physically after the implant. But she ought to have a very clear conversation with the EP about her lifestyle so the settings are appropriate for her. She will benefit from counseling for her emotional and mental well being.

 

Mother of a 6 year old

by Slowdive - 2021-06-15 19:07:10

Hi Andrea,

I'm mama of a 6 year old that got her pm since half a year now. She's doing really fine with it. So I'm also a still a newbie, but I can at least share some experiences with you. I prefer to drop you a direct message.

All the best!

Take it from me

by gillcatdec - 2021-06-15 21:39:56

Hello, 

I'm 19 and just had my PM implanted about two months ago. I was absolutely devastated when I was told I needed it, and even going into the surgery I didn't feel prepared. Make sure your daughter gets time to discuss everything with the professionals and ask questions, but also don't be afraid to ask questions yourself. I definitely didn't ask enough questions, but thankfully I found this group haha 

I'm a little on the lazy side in general, but since getting my PM i've felt an overall increase in energy and health. I've read so many comments on here about much older people biking and running for miles just weeks after the surgery. Recovery time varies, but I think your daughter would have no problem continuing with her activities as long as none of them are contact sports that could hit her right in the chest. There's chances of a lead dislodging or breaking, plus it really freaking hurts.

I had a lot of worries before surgery but the bottom line was that I needed the pacemaker if i wanted to stay healthy. How the scar would look and what activities i'd be able to do didnt really matter compared to that. However I can confidently say the scar isn't even that bad, plus like people have said above there's other options, and i can do all the activities i did before. The goal of the pacemaker is to allow you to keep living your life, not hold you back. Good luck to you and your daughter on this journey!

Had pacemaker implant at 16 years old myself!

by SamDam118 - 2021-06-16 00:04:14

Hello!

It seems like me and your daughter have very similar stories. I was an active, tennis player, gym goer, beach girl who had my first pacemaker implanted at 16 years old as well. It was unknown for years what my diagnosis was and finally was told around 10 years old that it was a second degree heart block. They waited until I was 16 for the implant - fully grown and also had an episode that was pretty serious. Tell your daughter that she'll be able to do all the things she loves! Except if she wants to be an NFL player.. that dream might have to go 🤫 It was nice having the attention from peers and recovery was about 3 months fully to be able to do everything again (with some limitations) I lived like any other 16 year old did - except I felt healthier and more energetic! And I'm 27 now and just had my replacement surgery last month. Still healing and taking it easy. But the last 10 years with my first pacemaker didn't defy any of my odds especially going through school and being young and active. If you have any questions feel free to message me! This was just a quick comment I wanted to leave to share my similar story in short. 
- Samantha 

that was me

by Tracey_E - 2021-06-16 11:04:13

I was about her age when I realized a pacemaker was in my future. This was before the internet so I didn't have anywhere to go to learn more and the unknown is terrifying. So, naturally I assumed the surgery would be horrible and my life as I knew it would be over. At that time, technology wasn't what it was today so my doctors wanted to wait as long as I was stable. So I felt justified in procrastinating. 

Knowledge is power. Be clear with her about what is going on. Make sure she understands what is happening with her heart and how the pacer will fix it. Let her be a part of the decisions. She's too young to be making the decisions, but she's old enough to understand and be a part of the process. Nothing is more scary than the grown ups talking around you and not knowing what is going on, that's when your mind jumps to the worst case scenario. My pediatric cardiologist used to talk to my parents as if I wasn't sitting there and that made me crazy. The first time I drove myself to an appointment and didn't have mom with me was when he finally realized I wasn't 5 anymore. (insert eye roll)

At 16, I was asymptomatic. At 20, I was tired more than my friends but brushed it off. At 23, I was really tired a lot and in denial and stubbornly pushing through. At 27, one day my heart rate plummeted to 20 and I landed in emergency surgery. I learned that the surgery was nowhere near as bad as I expected. I had a forward thinking doctor who brought in a plastic surgeon to do the placement so I wouldn't have an obvious lump or scar. And I learned that having a normal heart rate feels AMAZING! I had no idea how bad I felt before because I had nothing to compare it to. In hindsight I'm a little resentful that no one sat me down and explained the benefits, explained how much danger I was in by waiting, explained what the surgery was like. If I knew then what I know now, I would have been asking for the pacer at your daughter's age, before I started to feel bad. 

That was 1994. I'm 54 now and on my 5th pacer.  I have two daughters, 23 and 24, normal healthy pregnancies, healthy kids. Last weekend, I took my Girl Scout troop (a dozen 13 year olds) to Universal and waited in 100 degree heat with them to ride the rides.  I don't do coaster with magnetic brakes, other than that I ride everything. Two weeks ago, I took them kayaking. I hike or ski most vacations. This morning I went to Crossfit then went for a run after class. No one looks at me and sees a heart condition. There is nothing I want to do that I cannot.

The pacer doesn't hold me back at all, it enables me to do what I want to do. This is merely a bump in the road for your daughter. Both of you are probably in for some ups and downs emotionally but I promise you the thought of it is so much worse than the reality of living with it. Once she heals, she can do most everything she does now. The only exception I can think of is if she bases for cheer. She wouldn't want a foot to come down on the pacer. The pacer would survive it just fine, but it would hurt. Flying and tumbling should be ok. 

Back to roller coasters. Wait 6 months, preferably a year, after implant before putting that much stress on the leads. Technically we should avoid magnetic brakes, you can tell them because they are mostly the newer coasters with the very fast start/stops. At Universal, I don't go on Hulk and I didn't go on the new Velocicoaster. At Disney, I don't go on the Aerosmith coaster. I don't particularly want to go on those anyway because I don't like upside down, so the pacer is a convenient excuse. That said, I'm pretty sure I've been on other rides with magnetic brakes and never had a problem. I've been on an Olympic boblsed that pulled more g's than any roller coaster. I know the alpine coaster I've ridden countless times in Park City uses magnets and I feel fine on that. The new Hagrids ride at Universal uses magnets and I have every intention of riding it next visit so I can report back lol. I'm semi-local and have a season pass. Talk to her doctor about the coasters. Some doctors are very conservative and would have a cow at half the stuff I do. Other doctors, like mine, tell us to live our lives and not be fearful. He loves that I am so active, keeping the heart strong is the best thing we can do for ourselves. I've been pushing the limits for 25+ years and never once had a problem. 

Also talk to her doctors about placement, be very clear about her activities. The typical placement is just under the collarbone, just under the skin. This is the easiest and most direct line to the  heart and heals the fastest. However, they can go a little deeper and a little lower so it's out of the way. I can hike with a heavy pack all day and it's comfortable, I can wear a strapless dress and you'd never look at me and see that I have the pacer. IMO the extra trouble to bury it is well worth it. 

My doctor is an adult congenital specialist, which I highly recommend your daughter seek when she leaves the pediatric practice. I went to a regular adult practice for years and got good care, to be honest I didn't need much care just a yearly check up. They always said I was healthy, see ya in a year. As I got older, I was more uncomfortable with the fact they didn't have anyone else like me- no one else who'd been paced for decades, very few congenital. Instead of telling me I'm healthy, I wanted a practice that would tell me how to STAY healthy, be more proactive. The adult congenital clinic is night and day. Instead of being the rarity in the office, my doctor has lots of patients like me and great insight. 

Ask her doctor if she's a candidate for a Micra. It's a new leadless technology. It's not appropriate for everyone and not all doctors can do follow up care with it, but it's worth asking about. 

Ok, I rambled! I hope it's more helpful than overwhelming. If you have questions, ask away. If you want to chat, feel free to message me. I've been the mom, I've been the 16 year old being told I need a pacer. You will both get through this and she will go on to lead a normal, healthy life. 

Abdominal placement?

by asully - 2021-06-17 01:01:39

I wasn't young when I had mine placed but I now have expierience both abdominal placement and sub-pectoral placement.  I can say from my expierience I would opt for abdominal again if I had a choice.  I know abdominal placements are more common in adolescents as well.  I would explore all your options for placements and devices and find the most suitable set up.  If she can get a micra that would be AMAZING!  I am sure many on here wish they had those fabulous tiny things when we first had our devices placed.  Anyways I just wanted to chime in because abdominal placement is uncommon and sometimes overlooked as an option.  Before my heart failure got worse it was fantastic, discreet, protected by my "ladies".  I was able to participate in contact sports, ride quads, lift weights, mountain bike etc.  I know similar results can be achieved with other placements as well, it all comes down to preference and your EP.  I wish your family the best of luck! 

Micra?

by AgentX86 - 2021-06-17 09:34:20

I'm not sure a Micra is the best choice, though it's really the EP's call.  At 16, she's going to need perhaps tn replcements during her life. Ten Micras certainly aren't going to fit. While Micras are designed to be removed, there isn't a lot of experience behind it.

Anyway, my comments are more for general discussion than your daughter's case.  It's something to ask about.  Both questions, really.

 

me too

by dwelch - 2021-06-22 08:46:02

I was a teen/pre-teen when diagnosed, got my first device at 19 several years later (maybe the doc was waiting) this was long before the public internet.  It was decades before i found this site and have learned so many things including I am not alone.  When you start young (less than say 60 or 70) you will always be the youngest patient in the waiting room, even through most of your adulthood.  Possibly/probably the youngest paitient the doctor has.  I think in my case that helped in that I was right around the same age as the doctors son, so he probably couldnt turn that parenting thing off..

I was dangerously active, all kinds of sports, should have killed me as mine was complete, level 3, block.  As soon as I could I got back into bmx and skate (this was the 80s, so vert ramps, think tony hawk, but I mostly fell and tumbled down the ramp not landed).  the pacer didnt slow me down one bit just made it less risky.

Now that we have this site you can think about near and long term activities, if she wants to continue many of these activities there are alternate places to place the device.  If she is a flyer in cheer and being caught sometimes by her shoulder area in general or any form of activity where hits, heavy contact, or weight (heavy backpacks, football pads (girls should be allowed to play if they want to)), a sub pectoral or abdominal might be the right choice.  Mine was huge compared to todays (go look at the pictures of the guy who has been at this since the 70s my first one was like his second or third one, but still much larger than todays) and I was skinny then so it stuck out and was right there under the skin, but I had no issues.

Honestly the car seat belt is my number one problem and a big fuzzy fake sheeskin seat belt cover mostly takes care of it. 

Been at this for 34 years, on device number five, about mid way through.  My device life average doesnt sound good was something like 7, 7, 10, and then 4 due to an early replacement from a dual to a biventrical and about 4 years into that one.  Projected to be like 11 years even with biventrical 100% usage (maybe it is because I do not use the take home box and dont use the long range radio every day).  Of course the predicted battery life is essentially bogus, have had devices right after implant said 4 years.  

I am happy you found this site.  Find a doc you trust and trust the doc you found, that is key, dont be afraid to change docs.  The best I could get out of my parents was, they trusted the doc, so when it was time it was time.  I had years to prepare for this, wasnt necessarily happy, but knew it was coming. And I have had a number of docs due to moving and how insurance works.  And most have been very very good, I like them and trust them.  I had one I didnt and got rid of him and moved on.  I have a feeling I am going to retire this one soon and that is another problem she will face is that if she stays in one place long enough, she will retire that doctor and have to find another.  The doc picks the devices and such.  Your job and her job is to advise the doc on activities, she is into these sports, plans to continue for at least 10 years, rest of her life, etc.  Should we considere alternate placements, what are the pros and cons of those alternate placements.  Once you pick a placement, that may be it for life, although like me, as she approaches the age where most folks get their first device (well into retirement) she/tracey/me may have completely worn out one side and be time to start over on the other shoulder (likely abandoning the device and leads).  but expect that placement for mutliple devices, so think about it.  How important is this one thing I am doing today that I wont be doing after device number one.  As devistating as it is short term, long term it may be the right thing to do.

Follow tracey_e on this site, go through and read answers.  Education is a key here.  When you sit down for that talk, lay it all out, grind through the tears, this will be hard for all of you but if she needs a device, then you must do it and do it sooner not later.  She will be granted a full life, with minimal restrictions if any.  I am sorry if I dont know all the cheer terms, but I think being a flyer would be the biggest problem, but I think all other cheer activities would be fine.

I have rambled on too long.  Be strong, I am a parent too (made it through the teen years, whew), I know how hard this is.  I am so happy you found this site.

asymptomatic AV Block stage 3

by Ram - 2021-06-25 16:23:09

This isn't advice but I was interested in reading all of the above.  Around 18 my pulse was in the low 30s and I felt tired and went to a general MD. My blood pressure was low too and he just said to eat lots of salted popcorn, chips, etc.  I did and gained weight but bpm went normal. Skip 50 years I led a very active life but ended up seeing a heart specialist for heartburn recently and they discovered the AV Block and recommend a PM.  As I'm asymptomatic could I have had these 4 sec heart pauses my whole life?  I have been told not to drive for fear I may pass out so I'm looking at the Micra AV which even if you got two that could be 20-30 years and by then there may be something better but if not I hear they can turn them off and give you a traditional PM.  Something to consider for a youngster as invisable and faster recovery too I've been told?  Personally, I'd rather wait for a symptom but I guess that is a gamble too.

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