Advice Please

Hi there! I am 16 and having my pacemaker placed in late January /early Feb just wondering what I should expect after surgery and recovery? I am also travelling overseas (I live in Australia and am going to Singapore) in July, anything I should be aware of in regards to traveling with a pacemaker? Thanks you in advance 😁


7 Comments

welcome!

by Tracey_E - 2018-12-26 09:16:50

Glad you found us! Number one thing you can expect after is to feel better. I have congenital av block and my heart rate had dipped to the 20's so I was exhausted, always dizzy. After was like night and day, no more dizzy spells, tons of energy. That was 24 years ago and I still feel great. Having it doesn't really change my life much other than to keep me feeling good. Most of the time I forget it's there. There is nothing I want to do that I cannot and no one looks at me and thinks heart patient. 

Surgery and recovery. Every country and doctor does it differnently. Some keep us overnight, some go home the same day. Some use local anesthesia, some use conscious sedation. No one does general anesthesia anymore, it's overkill and the others are easier to recover from. You will probably wake up with a sling and they 'll want you to wear it for a day or two. After that, avoid lifting anything heavy or raising the arm overhead for 6 weeks, but other than that you can do what you want. It's important to use the arm as we heal, otherwise the shoulder can freeze. I slept a lot the first few days, by the end of a week I was back to what I usually do, just moving a little more slowly. 

Ice is your friend. Ice, ice, then ice some more the first few days. That and over the counter pain meds are enough for many of us, tho they may give you something stronger for pain if you need it. My doctor gave me a prescription but I only took it a couple of times at night to sleep.

Wear a button up shirt to the hospital so you don't have to pull anything over your head. 

I found it helpful to sleep hugging a small pillow so I didn't roll onto my sore side in my sleep. 

Traveling with the pacer is easy. Newer pacers are ok to go through metal detectors so we no longer have to ask for a pat down. The 3D scanners are xray based, so they've never been a problem for us. They should mail you a pacer id card, keep it in your wallet, though I  can count on one hand the times I've needed mine in over 20 years. 

If you end up in a situation where they use the wand, ask them to keep it below the waist, or ask for a pat down instead if you don't trust them to keep it below the waist. Airports are well trained but placed like concerts and amusement parks are not and they may get the wand too close to the pacer. It probably won't hurt anything, but it's possible for it to put the pacer in test mode  so it's best to avoid it. That goes for any magnets, if they are less than 6" from the device, it's possible for it to make the pacer switch modes. Once we get away from it, it'll switch back, so no harm done. 

Good luck!!!!! If you have more questions, just ask. I found the surgery a lot easier than I'd built it up to be in my head, and after I felt better than I ever could have imagined. 

first pacer at 19

by dwelch - 2018-12-26 22:07:02

My situation is very similar to Tracey, am on pacer number five.  complete heart block from birth.  I got my first pacer at 19 and went from the US to Saudi Arabia three weeks later.  This was 31 years ago (32 years ago?).  Anyway.  The first time is your first time first recovery from this you dont know what to expect, it takes weeks to fully recover but various things only take so long.  Hurts to try to wash your hair with both hands for  a while, docs often dont want you lifting that arm for weeks anyway, use pain to determine your limits, but dont cave into the pain find the boundaries on a regular basis so that they can move forward, be gentle and slow with those boundaries.   Sleeping back to normal weeks, sleeping through the night, days, two or three and you can probably get through.  Dont be afraid to tell airport security you have a pacemaker, they are far better trained today than when I was on pacer number one and travelling.  Other activities are like others between days and weeks.  If you are/were active, take it easy, be protective of the site.  on my first one somehow I moved it so much one wire moved around and over top.  I have a guess when that happened.  Just be careful with the site. you can definitely return to all the activies you did before and you can do them better and add some you might have been told not to do...

There are folks like Tracey and my self that have been at this 30 years and basically will have these devices most of our lives, you will too and it aint no thing.  Even though Tracey answered the question and I am going to answer that you can wak through the metal detectors no problem even with my first pacer way back when.  But you still want to mention this to your doc that you are travelling just so he/she can tell you what we told you and I recommend that you still tell the airport security, I tell the person that is sorting us into lines for the scanners/etc and sometimes there is a special line.  Then as you are putting your stuff on the belt to be scanned and before you go into the scanner you tell them, no reason to mess with security, let them tell you to go through or to go around, its their job to know and to be trained and follow a procedure. If you dont and set the thing off then you tell them that doesnt make them happy, doesnt make them mad but, no reason to mess with them, no reason to play games.  They should be trained not to wave/hold the wand over the device.  Tell them you just had it put in and it is healing so if they do a pat down maybe they will take it easy on you.  Before you go on this trip make sure you and your folks know what signs to look for around the area in case of infection or other and you can determine if you need to find a doc on your way or wait until you get back.  ask your doctor what your lower limit is, check your rate, count for a full minute, you should be around or above that, if you are well below that then call your doc.

all in all, these things are not that uncommon anymore, docs are putting them in all the time, the devices are so much better than when I started, the odds are you should have no problems and just feel better.  Granted you may feel strange, and strange is probably good.  My reseting rate was in the low 40s and sleep upper 30s, started off with a limit of 60 I think maybe 50 so sleeping was strange from that not just the initial recovery.  Also it was very very empty, before I could feel every beat, my heart was enlarged do to the problem, plus the rusing of blood could be heard in my ear(s).  that went away with the pacer. that was normal and good, but I had to get used to it...you might be going through something like that.  Taking my pulse to make sure my heart was working is for the most part how I resolved it.  I had never needed to put a finger on my wrist or neck before I could just count my beats from the symptoms above.  so that actually took some practice.  you know what, I was never dead, my heart was working...

You are going to get thorugh this just fine.  You will likely be the youngest paitent in your doctors office your whole life.  But you are not the youngest person here or at least there are some parents here with kids younger than you.  And I am sure they could use your help talking them through it or having your parents join in and helping those parents.  When you become a parent you will understand how hard this was for them.  You would consider Tracey and myself as old people but there are some younger folks here or that have popped in from time to time.  There are some that started this journey when they were younger than you.  You are always welcome here and let us know how it went, the procedure and your trip...

Please advise

by MissyG - 2018-12-27 01:07:01

Have a family member that works with Delta Airlines and she said that people with pacemakers or ICD have priority boarding. You may want to verify that. Good luck sweetie you’ll be just fine! 

To all

by EG2002 - 2018-12-27 06:24:09

Hi Everybody! Thank you all so much for your comments. I am excited to start a happier life after my pacemaker is placed 😁

priority boarding

by Tracey_E - 2018-12-28 11:25:16

There is absolutely no reason why an airline would give us priority boarding. 

I heard of someone who tried to use the pacer to get priority on rides at Universal. It backfired, they wouldn't let her on any of the rides. 

Go with a don't ask, don't tell policy pretty much everywhere. There's no reason to bring it up unless we're near big magnets. 

Priority boarding

by MissyG - 2018-12-28 16:29:46

Hi Tracy! From my understanding was that airlines prefer to have individuals with pacemakers or ICD seated  in front of the plane in case of emergency or need medical attention is needed. My cousin works with Delta as supervisor  at the Oakland international airport. 

Missy

by Tracey_E - 2018-12-30 21:42:49

That's interesting, I'll ask next time I fly. It would make sense to put medically risky passengers at the front but there's no reason why we'd be more likely than anyone else on the plane to need medical attention. 

You know you're wired when...

You can hear your heartbeat in your cell phone.

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I wouldn't be alive if it wasn't for pacemakers. I've had mine for 35+ years. I was fainting all of the time and had flat-lined also. I feel very blessed to live in this time of technology.