Daughter is getting a pacemaker soon.

Daughter will be told this Monday that she is getting a pacemaker.
She is 16 and in Varsity Sports.
I know this is the best but what is the recovery time.
She is very healthy but just has a low heart rate of 40 now for 4 yrs and the meds are not working anymore.
I see two weeks and am hoping it is true.

9 Comments

Thanks for the info.

by grace - 2008-12-12 05:12:14

The emotional, well 16 and hormones from heck, we will have to do our best.
She is Varsity Basketball so that would put the season to an end. Like she is playing now without fainting. No, this will not go well.
The doctor said there is a new medication, I am hoping it is not a trial, that could possibly be used.
I am not sure taking the meds is worth the risk of her kidneys and her liver.
That is my 6pm phone call.
This came out of left field 3 days ago and I am a bit scattered.
Thanks again.

which recovery?

by winesap - 2008-12-12 05:12:44

She is young so physical recovery will be pretty quick. She will have some swelling and incision area discomfort for a couple weeks. The lead(s) are physically implanted into heart tissue and generally we are told that it takes 6 weeks for sufficient scar tissue to form - arm movement and weight lifting on the side of the implant (usually left) is restricted for that 6 week period. "tuning" of the device varies from immediately OK to several months. Emotional recovery may take several months - or for some there are few if any emotional issues.

I know you are correct.

by grace - 2008-12-12 06:12:09

One thing that does make me feel good is that her doctor is doing a full check on the new medication and then we will talk.
It is so new he has never used it and the info came from a conference call.
She can go on a higher dose with what she has now and he firmly believes that is not the correct choice in reference to the side effects.

Thanks Bionic Beat:)
Your kindness is appreciated.

Hi.......

by Bionic Beat - 2008-12-12 06:12:16

I can understand why you're a bit scattered.

At 16 she may not be receptive to missing the end of her Basketball season and it's upsetting.

BUT, you only have one heart and one life.

You may have to 'be cruel to be kind' in this situation.

My daughter (at 13) wasn't thrilled when we cancelled a camping trip so that she could have immediate cancer surgery.

I gave her a 'reality check' and moved on.

She's now a healthy 24 yr old working on her second university degree.

FWIW, I wouldn't risk any major organs to take drugs, if your daughter needs a pacemaker, it's not perfect but it's hardly the end of the world.

Best wishes to both of you.


Bionic Beat


symptoms?

by Tracey_E - 2008-12-12 07:12:51

Is she symptomatic? I'm no doctor, but if she's feeling good enough to be playing varsity basketball, why can't the surgery wait until the end of the season? My hr was low 40's due to a congenital block, also, and I put off getting the pm until my 20's, was never on any meds. Yes, I waited too long and she shouldn't do what I did, but I don't see that another few months will hurt. Adults need to have the higher heart rate, but younger bodies can adapt more easily. Has she had a holter test to show how she does when she plays and just how low she gets?

IMO, the pacemaker is a better solution than drugs. Once she gets it in and gets the settings just right for her, she'll be able to forget all about it for the most part and have a full, active life.

I doubt they'll let her play for 6 weeks after the surgery. Aerobic exercise is ok after the first week or so but she won't be able to lift any weights or raise her arm above her shoulder for the full six weeks.

support

by winesap - 2008-12-12 09:12:16

There are young members of this site - your daughter may benefit from direct communication with them. Do not minimize the emotional issues - I think it hits almost all of us harder than the physical issues (which on balance tend to be positive). I'm a scruffy old guy that has dealt with heart issues for 3 decades and the pacemaker hit me like a ton of bricks emotionally. We have this physical mark and you can physically feel (and see) the device under the skin - it is a constant reminder of our vulnerability and of the fact of our mortality. Please excuse my being graphic but imagine the joys of sexual exploration and encountering this "thing" right above her breast and/or this three inch scar on her chest. It would be tough for me, I can only imagine how tough it would be for a young woman.

Just WoW

by grace - 2008-12-12 10:12:09

She blacked out several times this week and each time she has done this in the past the doctors have upped her two meds.
It is not working anylonger.

One med is medidrine and I know I spelled that wrong but the bottle is in her sports bag.
This med should help really fast and now it is nothing.

Just knowing my daughter it will be a rough ride.
Emotions on the sleeve kinda thing and will HELP everyone.

Her condition is quite unusual.
Her normal heartbeat is 40 when sitting at a desk but can bring it up to 190 quickly and keep it there until now.
She now cannot bring it up fast enough, so blackouts.

There are only 100 doctors in the US(pediatric) that specialize in this and her cardioligist is tapping 4 of those resources across the US to make the best decision.

She has to sit out of practice now because it has become so consistant in blackouts this week.
It has been a while since this has happened.

She is going in for a massive amount of tests this Monday and this simply sucks.

My goodness this imput from you folks is great and TRULY appreciated.






don't wait

by Tracey_E - 2008-12-12 10:12:16

if she's blacking out, don't wait! It's a lousy time of year to have to deal with this but maybe you can time it so she doesn't miss any school. If she can't practice anyway, it sounds like the season is already over for her, poor kid.

It also sounds like she has the type of problem that is most easily fixed with a pm. It won't let her rate get too low, and it will keep it up when it needs to be up. She'll be feeling better in no time!

If you have more questions, please don't hesitate to ask!

location

by Tracey_E - 2008-12-12 10:12:44

winesap's comment about seeing and feeling it reminded me of something... you may want to talk to the surgeon about an alternate location, especially if she's thin or small boned, or has image issues. They are usually placed on the upper left chest, just under the collarbone, just under the skin.

It's not a big deal to put it somewhere less conspicuous, but most surgeons are in a rut and never give it a thought unless you ask them. They can do them a bit lower but just under the skin. You'd still feel it but the scar wouldn't show with most tops.

Or mine is called a submammary implant. They went in from the side (about where the underwire of my bra hits) and buried it behind (posterior to) the breast. My recovery time was a little longer because it was buried deeper, but I don't have any visible scars or lumps and it's awesome. Having it there also means seatbelts don't rub and I can carry a backpack (I love to hike) and do weight lifting with no discomfort whatsoever. Not everyone has problems with these things but some do, esp small boned women.

As for emotional issues, it all depends on the person! Be aware that she may need some time to adjust to the idea but don't assume it will be bad, either. I know I don't speak for everyone here, but for me there was no emotional adjustment whatsoever. I felt so amazingly full of energy after I got it that I honestly never had a problem. I recovered very quickly physically and had more energy than I'd ever had before. I was never anything but grateful.

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You have a 25 year mortgage on your device.

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