Advice for upcoming surgery

Upcoming surgery

by H van Dyk - 2023-12-31 08:24:32

Sorry to hear that your daughter already needs a pacemaker at her young age. Please understand that the pacemaker is doing a splendid job in monitoring her well being. Here in The Netherlands we have several soccer players, who are allowed to play every week - even at the level of UEFA Champions League.
Hope this will set your mind at ease concerning her sports life...

new pacemaker

by new to pace.... - 2023-12-31 08:29:05

Sorry to hear this about your daughter.  While you are waiting for others to respond.  You might try the search.  Next to the log out on the top line is what looks like a magnifing glass.  Click on that and put in your questions.

You will see that many have had a pacemaker at a young age. And have done quite well.

new to pace

Hi and welcome!

by Lavender - 2023-12-31 09:40:02

As a parent, it's very concerning when our children need medical care, especially a lifelong device to keep them going. I can see what a good parent you are-walking ahead of your daughter to see if there's danger on the path ahead. 
 

We do have even babies getting pacemakers. You have to do what's offered in order to ensure a healthy long life, even when it's frightening. 
 

Putting the device deeper under the muscle is a good plan. It will initially cause more discomfort during the healing process but burying it in there will keep it out of the way. 
 

She will be able to resume her sports, even moreso because her heart will have a backup safety net. Her life will be normal. The increased heart strength will pump more oxygen through the body, making everything work more efficiently. She will be energized!

After surgery she will have to keep her elbow on the pacemaker side lower than the shoulder for a few weeks of healing. Make sure she moves the arm and shoulder often so it doesn't get stiff. If she comes home with a sling, make sure she takes it off after a couple days and moves the arm. Just not above her head. Have her drink more water than usual so she stays hydrated. I found ice packs helpful-just not directly on the skin-cushion it with a kitchen towel between the skin and ice. 
 

Kids heal and bounce back quickly. It's good she's been helped now so she can enjoy life without exhaustion. 
 

May God calm your worry and heal your daughter. Peace🕊️

Reducing the scar

by LondonAndy - 2024-01-01 03:40:14

In case useful, whilst the incision they make to insert the device is small and may be almost unnoticeable anyway, if she wishes to reduce it there are a couple of things that can be done:

1. Don't expose it to the sun for the first year. Doing so can make the scar go darker permanently.

2. After the skin has resealed, ie after about 6 weeks, rub bio oil daily for several months. My scar became so invisible that at my annual check-ups pacemaker technicians used to ask me to confirm which side of my chest the device was on, because they couldn't see it!

Scar

by Lavender - 2024-01-01 18:12:02

I did nothing special to treat my wound and it still healed to a very thin white line. No one would notice it unless I look for it myself and point it out. Nothing sticks up either. 

CHB

by Tracey_E - 2024-01-07 11:48:00

My CHB is congenital. I knew as a teen I'd eventually need a pacer but didn't get it until my 20's. I'm 57 now, still healthy and active. I've been told over and over that having a pacer does not affect my lifespan. It truly doesn't affect my day to day life, other than keeping me feeling good. There is nothing I want to do that I cannot. 

It's great that the surgeon took placement into consideration. Once she fully heals, there's no reason she shouldn't be able to play volleyball due to the pacer. Mine is also under the muscle. A warning, this will leave her more sore than if it was placed in a more shallow place. I felt mostly myself after a week, but was moving more slowly. It took about 3 months until I could do my workout routine without any residual soreness or awareness. I'm not saying it hurt that long, just that if I moved the wrong way or picked up a heavy weight, I was more aware of it those first months. 

Have her wear a button up shirt to the hospital. She won't want to be raising the arm to pull anything over her head the first week or so. I wore tanks with built in bras instead of regular bras those first weeks also, was easier than twisting and stretching to get a regular on one.

Ice is her friend. I don't know why, but sometimes they don't offer it in the hospital so ask for it if they don't. I found this helped with pain relief more than the meds. 

I found it helpful to sleep hugging a small pillow until I healed. This kept me from rolling onto my sore side in my sleep, and supported the arm on the sore side.

A word of advice as someone who is a parent now but was once that kid with the heart condition. I know it's hard, but try to resist the urge to wrap her in bubblewrap. There is nothing worse as a teen than feeling different from your friends. This bothered me more than having a heart condition scared me. I will forever be grateful to my parents for not treating it as a big deal, for focusing on what I could do rather than what I could not, for never letting me see how scared they were, for teaching me that my normal isn't the same as other people's normal, but it's still normal and ok (if that makes sense lol)

I am sorry your family is dealing with this and hope the pacer improves her quality of life.  Please feel free to message me if you or she has questions about the surgery, recovery, or living with a pacer long term. While it's scary now, I promise it will get better, and months from now you will be surprised to look back and see that it is easier than you expected. 

Be well and stay strong.

As a fellow young person with a pacemaker

by Buzbuz9 - 2024-01-09 09:33:50

This is a little late but I thought I would add some of my tips since I am 24 and have had a pacemaker since I was a baby and know how it feels to be a 15 year old with a pacemaker. 

Tips:

- Get seat belt covers for your car (good for safety and it will bug her scars less) you can find all kinds on amazon

- front clasp bras are a goodsend, highly recommend 

- scar care is key my fav brand is mederma (once approved by doc of course)

- I personally wear a medical alert bracelet in case of medical emergency (they have some cute necklace  options too)

- if she wants to connect with other pacemaker havers she can come here or there is also a subreddit r/pacemakerICD that has lots of younger people with pacemakers and ICDs

- you prob know this but just in case you can rotate pain meds to get more releif while recovering from surgery (i keep a pen and paper log of times and dosages for tracking and saftey) 

I hope her surgery went well and she is having a smooth recovery :)