what is recovery like?

Recovery

by AgentX86 - 2023-04-18 02:26:39

Welcome Iris.  Sorry you had to come here but here we are anyway.

It's almost always a piece of cake. It's somewhere between a root canal and an extraction (IOW, a nothing-burger). At 16, you're problem will be  giving it time to heal fully.  You're going to want to get back at your normal routine too soon.  Give the would time to heal!  This is critical.  Infections can be life-threatening so make sure you don't reopen the wound. Be very careful for a couple of weeks (your doctor will give you instructions) and limit the range of motion of your arm to shoulder height, no reaching behind the back, or full extension, and no lifting (8-10lbs) for about four to six weeks.  Beyond those limitations, use your arm normally.  Keep your shoulder moving.

After a couple of months it'll be just another bellybutton.  You won't remember it's there unless you happen to come across it. You'll just get on with life.  There are exceedingly few permanent restrictions.  You're unlikely to even come across them.  Your cardiologist can give you instructions. 

It is important to discuss your lifestyle with your cardiologist before your surgery.  Some pacemkers are better for some activities than others.  This depends on the reasons for the pacemaker too. Your cardiologist is the one to have this conversation with.

Your cardiologist is right.  There is nothing to worry about.

Recovery

by Penguin - 2023-04-18 06:06:41

Hi Iris & Welcome, 

There are a few younger members here and some older members who had pacemakers put in for the first time in their teens and twenties.  Getting a pacemaker at your age is quite different psychologically to getting one when you are older when all sorts of body parts are showing signs of wear and tear, and therefore recovery for you may have a more of a psychological edge to it as you may need to accept that this device is 'for life' (?) Having said that many younger people embrace the technology as it opens up a new life to them because they feel better and are able to live life more fully. 

Appearance wise, there will be swelling and a scar if your pacemaker isn't placed beneath breast tissue (which may be an option for you).  The appearance improves with time but will look a bit scary initially.  As a younger person this may or may not trouble you. Positioning is something to discuss with your surgeon but, as with most things, you will get accustomed to it and in time and you will forget that it's there.

The other aspect of recovery not covered above is liaison with the pacing clinic. Your pacemaker will be selected to suit you and your lifestyle, so make sure they know which activities you do and even what you'd like to try to do for the first time if you have been limited up to this point. Initial programming during the recovery period may not be perfect and you should bear in mind that programming can be tweaked if it's not quite right.  Just speak up and ask if you have any problems.

Also we are here for support. If you need any advice, support or have questions which feel a bit daft - please ask us! We've all been there and I am sure that there will be lots of people eager to help you through this. 

Best Wishes & please keep in touch with this forum.

At your age

by piglet22 - 2023-04-18 06:49:34

It must have been a bit of a shock to have been diagnosed with some problem that needed the intervention of cardiologists and a pacemaker.

Did they say that it was for life?

Either way, see it as a step forward and you will have a new friend plus a good talking point.

In the UK, one of the stock jokes includes old age, walking sticks, Zimmer frames and pacemakers in the same breath.

Heart problems emerge at any age, from the moment people are born through to normal wear and tear.

The procedure is straightforward and painless, probably a lot less stressful than AgentX86's dentistry. Given a choice, give me a pacemaker implantation any time. They even asked me what music I would like. I went with their choice Iggy Pop Passenger.

You probably won't get an income from professional boxing or US football or UK rugby, but as a survivor of many cycling accidents, falls out of lofts etc., the odd electrical shock, the pacemaker has always come through.

Good luck.

Fear not

by Daedalus - 2023-04-18 13:23:16

You'll be fine, Iris.  I agree with the above comments.  Just want to add to keep moving that arm afterwards.  I'd suggest wearing the arm sling they'll put on you for the first 48 hours, but then ditch it (or for a couple weeks just wear it at bedtime so you don't inadvertently raise that arm above your shoulder).  During the day use your arm being careful not to raise your elbow above the shoulder.  Four to six weeks of that.  Don't lift anything over 8-10 lbs. with that arm for a while, too.  Personal note.....I kept my arm immobilized too long and still deal with some soreness 14 months post implant.  Procedure itself was easy as I was out cold and woke up in recovery room feeling fine.  They kept me overnight as I was started on a new medication and they wanted to be sure I wouldn't react badly to it.  

Hang in there and let us know how you're doing.

Hugs

by Lavender - 2023-04-18 22:00:51

What a big worry for such a young person. I'm sorry you even have to think of this problem. I'm just as glad to know that your heart problems have been discovered and you can live a normal life with a pacemaker. 
 

Recovery for me was more mental than physical.  I just did not want a pacemaker.  It made me feel fragile and weak knowing that my body was no longer functioning on its own. I had a little swelling but not much. I have a little thin white line scar which no one notices. It's about an inch long. You can't see my pacemaker. It doesn't stick out. I don't look or act like a heart patient. 
 

My left arm was sore and my neck. For a while. But it got better. I only wore the sling about 24 hours. I used ice packs near the pacemaker when it was uncomfortable. I had some weird little sensations like what they call " ant bites". Everything went away. Life is normal. I do anything I want. I have a grandson older than you, so I'm no spring chicken. You're gonna be fine! Better than ever. 
 

There are many famous people with pacemakers. You're joining an exclusive club. Welcome aboard. May God guide you through. Hugs!

easier than you think

by Tracey_E - 2023-04-20 10:19:31

Your cardiologist is 100% telling you the truth! Sometimes reading through posts here it's easy to think everyone has complications but the truth is it's pretty rare. Those are the people more likely to come here for advice and support, so it seems out of proportion.

I was your age when I found out I was going to need a pacer, but this was before the internet and I had no way to do any research so I assumed it would be the end of the world. Turns out it wasn't a big deal and I felt so much better. I was suddenly able to keep up with my friends. I now have daughters older than you, and I'm on my 5th pacer. No one would look at me and know there is anything wrong with my heart. I lead a perfectly normal, active life. 

Immediately after you will probably be a bit sore. I found ice helped more than pain meds. By the end of the first week, you should be feeling much more like yourself but maybe still extra tired and a bit sore. By a month, you will be getting back to 100%. 

Long term, once you heal you should be able to move on with your life and much of the time forget it's there. 

Talk to them about placement. If they put it just under the collarbone, just under the skin it will heal the fastest but also be the most conspicuous. If they go a little lower and/or a little deeper, it can be hidden more.

I hope it goes well for you! Please let us know how you do. If you have more questions about the surgery itself or living with it afterward, feel free to message me. You will be fine! Probably better than now, if I had to guess. I procrastinated and procrastinated, then later regretted waiting because I felt so much better after. 

Go with the flow

by Beanfor - 2023-04-20 23:54:20

You will be surprised how easy it was when you are done. It was very easy for me. I am old so should be easy for you also. God bless you. 

We are all Club Members

by Stache - 2023-04-22 21:38:56

The surgery is a piece of pie in my case after they put me out. Not once but twice.  30 days later I had a severe infection my pacer was removed and a lot of tissue was removed as well.  My pocket and pacer really cleaned and then reinserted.  In my case a bad batch of stitching thread caused the infection, it happens in rare cases such as mine.

This is nothing to worry about pacer makes good sense and recovery is a few weeks.  Your body will get used to the pacer over the weeks and soon you will forget it is there.

Life does not change, mentally it is a struggle at first to accept then you realize life goes on.  Having a pacer is no big deal, I am extremely active and back on my mountain bikes and still doing dumb male things.  Just roll with it.  Being bionic has its plus I don't get tired on the bike anymore.

its ok

by RZ - 2023-04-24 23:52:06

It is not a major surgery.   Pain is very little.  The first month is uncomfortable for most people. Most are doing well within 4-6 weeks.  No lifting at first.  

You will be fine.

Thank you!

by TJBuer - 2023-05-05 06:23:19

Iris

Thanks so much for your post and all the wonderful comments!

 I'm scheduled for a pacemaker implant in a few weeks.  My cardiologist, electrophysiologist, and wife are strongly urging me to have it done.  I've been resisting it.  I'm 77 and have been physically active most of my life (competitive swimming, running, etc).  I'm having a hard time accepting that the ticker needs some help.  I've also had some unfortunate experiences with surgeries.  You guys have instilled the confidence I need to move forward.

Tim

you are not alone

by dwelch - 2023-05-14 20:29:31

Tracey_E, myself and others that have responed and may yet respond have had devices for a long time.  The pacer will fix heart block and make your heart work normally.

I was younger than you when diagnosed but older when I got my first device (19) I am also on device number five, have had pacemakers for 35 years.  I have leads older than you.

I was very active before the first one and continued to be very active and normal after until life and work and things slowed that down over the decades.

As with everyone with a diagnosis here you are part of a subgroup, the one possible difference is those of us with heart block from birth or childhoold have pacers for life.   We will always be the doctors youngest patient.  We will become pros at this with the number of devices and experiences, etc.  

The first recovery is the longest one, not that it is measured longer in weeks or whatever but because it is a new experience.  By three or four you might make the mistake I made and I got lazy and got a stiff shoulder, big mistake that does hurt for a long time.   

First night sucks, period. 

Toss the sling as soon as you get in the car or home.  Use the arm but dont push it.  Find the pain edge and stay within that.  It will get better every day.   I find it best to use no pain meds. YMMV

Sleeping through the night takes a week or two.  You are young though so you will recover much faster than so many of the rest of us further down the road of life.  Sleeping on that side may be week two or three, depends. 

Washing hair with both hands, things like that, dont expect this right away.  Week two maybe or week three.

Plastic quart storage bag and medical tape across the top and down the sides allows for a shower without the device getting wet.  No need to sponge bathe.

Despite what the docs or anyone says, you will end up "helping" the tape strips come off.  

Normally you dont see any stitches.  If you do keep an eye on them they will normall "spit" themselves out.  Or on one of the visits the doc/nurse can pull it out.  Normally they are inside and disolve.

The site is a bit bloated more than normal right at first so it may be scary big bump, but it will settle down, and as my first doc said, nature does not like sharp corners.   Your body will smooth it out.  

There will be a visit back to the doc probably after a few weeks to check on the incision, check the settings.  And then some number of months, another visit,  and then it may turn into once a year for several years.  A combination perhaps of the technology of the time I did have more visits to tune the device settings, but those settings back then are mostly automatic now and do not require you to go in.

Mentally.  It took me a long time, but I had a big heart, the reason for the decision (to stop it before it got dangerously large), and could literally feel and hear every beat.  the pacer made that sound go away which was technically very very good.  But it was empty and scary.  Perhaps if there had been a public internet and a forum like this and I was not all alone in this journey, maybe it would have been easier.  Done now, passed, history.

It really, truly, becomes like another belly button or middle toe.  You just dont think about it until it is time to go in for a visit or unless you bump it.  It hurts, you will bump it more probably the first few months/year than the rest of your life as you will subconsiously learn to either protect it and/or not lean into things or bump it on things, etc.  I have taken some pretty hard hits with no damage, they are tough.  

Ask the doc for your copy of the report any time they use the machine with the cabled device that sits over the pacer.  On it among other things are your minimum and max settings. If ever in doubt about it working take your pulse for 60 seconds, no cheating, and find it is working fine.

Dont hesitate to call the doc or have your parents make an appointment.  You should start now learning to talk to the doc yourself.  Maybe I am lucky but I have found that cardiologists are attentive and caring.  Esp with young patients.  If they are not, find another doc, they are there to make you feel better, you are not there to make them feel better.

Most people have been fed misinformation about pacemakers, from movies and television, etc.  It is not, and certainly not with heart block, a crippling thing.  It fixes it, like wearing glasses.  You are not fragile and require special treament, etc you are normal and can do all the same activites of any else.  You may have to educate teachers, friends, students.  Or may choose to just avoid the dumb ones.  Tracey_E is well researched, read what she has written on this site, ask questions, ping us directly.  I have a daughter as well, and know that this is not the best age for communication with your parents, but your parents are welcome to contact us as well.  Trust me this is as scary for them as it is for you. 

You are going to be just fine, this is only going to be a few weeks and then ten years before you have to deal with it again.  It makes your heart normal and you can do whatever you want after that.   Each day or week of those few weeks you regain some normal function of your life and then before you know it it is over and you can move on to forgetting about the device.