27 yr old from UK- 7 days ppm

Hi everyone- long post warning!

This is my first post.. i know most of you are from the US but i have seen a few UK posts. Ultimately we are all in a similar situation, just a difference in healthcare etc.

So I have recently had pacemaker surgery at the ripe old age of 27! I Have been under investigation since around October last year, diagnosis being intermitent 2:1 AV block with episodes of complete heart block. Symptoms mainly being dizzyness, palpitations and breathlessnes. I had lots of tests since Jan and surprised i haven't turned into the Hulk with the amount of radiation I have been exposed to lol! 

So first week of April I collapsed mid-walking at work, luckily i work in a hospital so plenty of people to assist. The Drs phoned through to St Georges, London, to speak with my consultant who said I was to go for surgery the following week as symptoms getting worse. I had the surgery on 16th April and all went well. Felt rubbish after but i think that was the side effects of sedation. I was sent home that afternoon.

Anyway, 2 days later i get the most horrific chest pain ever, to the point i was struggling to breathe. Called NHS 111 who sent an ambulance and i was then blue-lighted to nearest a&e. I had chest x-ray and CT scan and all looked normal, apart from the ventricular lead that looked too high up. The pain also only came when i was being paced. Consultant informed me that he would need to remove the lead and replace it, which effectively meant having the operation all over again and i would need to stay in until they could do it on the Monday (20th). Holy moly the surgery was awful 2nd time round!! This time i could feel everything inside, probably where it was so tender still.

The next morning my heart was pounding away at about 105bpm and the palpitations were next level. They fiddled with the settings and got me comfortable and i went home next day. My skin also reacted to the dressing so i woke up with huge weeping blisters, and effectively burnt skin.

I am now 6 days 2nd post op and the wound was feeling better, but today the pain has flared up. I am due a wound check tomorrow and hoping the stitches are nearly disolved. I am still experiencing spells of dizzyness and palpitation, but could this be my body adjusting and should i leave it to 'settle' before calling the pacing clinic? 

i have felt very down since the op, mainly because of pain but also because i am so restricted due to lack of arm movement. I also have an almost 2 year old little boy who just wants his mummy and i feel so awful that i can't even pick him up!

Anyway.. sorry to bore you all! no real point to this post just wanted to get my experience across!

Take care :) 

8 Comments

Welcome Savannah

by Gemita - 2020-04-26 16:03:49

I live near London, UK and attend St. Thomas' Hospital, so we are not that far away.

Wow, what a journey you have had so far and I would say you have been extremely unlucky with the difficulties you experienced during pacemaker implant.  My implant was in 2018 and was straightforward and apart from some restrictions in arm movement for about 6 weeks, I was able to carry out most of my normal daily activities from Day 1.  I was sore and felt uncomfortable sleeping for a while but nothing more troublesome.

As you have your wound check tomorrow you can hopefully ask them about all your symptoms and be reassured that all is well this time.  Of course be guided by your symptoms and pain levels and if you are in any way worried, then don't hesitate to call for help.

When I first had my implant I recall for a few weeks my heart did complain (by producing lots of palpitations - at least far more than I had been experiencing prior to implant and with the palpitations came the dizzy spells) but as my heart got used to being "paced" things settled down just as my doctors promised.   I hope it will be the same for you very soon and you will start to really benefit from having your device.

Take care of that little two year old and get some help if you can.

It gets better!

by Bigdan - 2020-04-26 18:10:54

Hiya savanna, I'm 8 week post 2nd op and didn't feel normal - still felt light headed/spaced out etc til around 6 week post op both times. My first was removed due to infection concerns after a couple of months.

Be really careful not to over do it by lifting or stretching too much but do move it enough to avoid frozen shoulder. try not to rush your recovery..get it right and it'll be worth it in the long run.

I'm gonna start work again on Tuesday after being off since September going through investigations, treatments, waiting lists.. so can't wait to get back to normal life.

Hopefully things will start improving soon. Theres great support on here for any concerns you may have. Its reassuring to know others have and are experiencing the same as you with happy outcomes to look forward to.

 

 

welcome

by Tracey_E - 2020-04-26 21:40:32

Glad you found us! I was 27 when I got my first one for heart block, also. *high five*

If you are still feeling dizzy, call them. It's not at all uncommon to need to adjust the settings. 

I got my first one before I had kids but when my kids were 2 and 3, I had my pacer replaced. I found it easier to play with them and change diapers while sitting on the floor when I couldn't lift them. When standing, I would hold them on my right hip and use the left arm for balance. You can and should be using the arm, just don't lift over 8-9 kilos or raise the arm overhead. You can lift as much as you need with the right arm. If you don't use the arm, your shoulder will freeze up. 

You have been trough it.

by Graham M - 2020-04-27 14:47:57

Hi Savannah, welcome to the club.

I'm another one from the UK with heart block, and I also work in a hospital.

It must be very difficult having to go through all that you have at such a young age, but don't worry, there are many young people on this site who will identify with you.

I'm sorry you had to have two operations, but it looks like you are on the mend. You'll find that as the days go by, things will get better and better, and it is the small things that make the difference. The first thing to look forward to is having shower without worrying about getting your wound wet.

We all recover in our own time, and I'm sure that as the weeks go by, you'll find that your PM has given you a new lease of life.

Best wishes, 

Graham

Hey

by JaeJae - 2020-04-28 08:15:23

Sounds like you've been through alot so take time to rest and recover. As odd as it may feel now it's great to be on the other side of surgery and on your way to recovery.

I am now 5 weeks post surgery and for about the first 3 1/2 I was not impressed. I could feel my heart, lots of dizziness still and I couldnt do the things I normally would which was literally driving me nuts. As I start to get back to normality with movements and sleeping I must say I feel alot better (about the pacemaker mentally and physically). I get the odd dizzy spell still which I will follow up when I next see my doctor but a few people have recommended having the settings adjusted so may be worth asking at your next visit. I was also given some anti nausea medication to try in mean time which helps if I can feel it coming on (sometimes it's quite sudden).

Also I am 29 and also not from the US but from little old New Zealand.

Wishing you a speedy recovery!

hi!

by ckn - 2020-04-28 15:29:18

Hi! Thanks for sharing your story. I'm a 31 year old woman and recently also became a young(ish) pacemaker patient. Unfortunately I too developed a complication. In my case a pericardial effusion after the surgery- though so far I've avoided the dreaded 2nd surgery. I definitely feel your pain of having the recovery being way longer than I bargained for. Best of luck with getting your symptoms settled down and getting back to normal! It must be especially hard with a toddler. 

Thank you

by Savannah55 - 2020-04-28 18:03:14

Hi Everyone

Thank you for the warm welcome 🙂 It's nice to know I'm not the only one out there in this situation and not alone in experiencing issues.

My pain is going down every day now which is good, and with that means my arm is moving easier. But, I am so paranoid about another lead displacement that I am keeping it so rigid beside me all the time. When I get dressed I freak if my shoulder even moves the tiniest bit. Even washing I am so scared to lift my arm to get to my armpit. I think this has mentally impacted me more than physically at this moment in time.

I called the pacing clinic at St George's yesterday and they said everything is fine according to my home monitor, but I explained that I am still suffering with terrible dizziness (almost similar to near syncope I've experienced before). The nurse said she would pass this to my EP and see what he says. I'm not holding out much hope.

Fingers crossed I feel an improvement in the coming weeks. Sorry for boring you with my negative chat!

 

arm movement

by Tracey_E - 2020-04-29 09:14:04

If you keep your arm locked to your side, you are going to have some really painful frozen shoulder to deal with. You are not going to dislodge the leads by moving your arm. Don't be doing any pull ups or swinging a golf club just yet, but just moving the arm is important.

When a lead dislodges, it's not usually from anything we've done, but because it wasn't in an ideal spot or the heart wall didn't like the way the lead was attached. Also, the leads are not in tight enough that us moving can cause movement on it all the way down in the heart.  The lead is run through the vein, then comes out and they attach it to the box. There is usually enough slack here that they coil it behind the box. Telling us not to lift or raise the arm above shoulder level is strictly precautionary, and some doctors don't even give that restriction anymore. 

I hope this helps give you piece of mind. It's really really important to use the arm. I completely understand why you are paranoid but it's highly unlikely anything you did caused the problems the first time, and frozen shoulder is Not Fun. 

Have you had a tilt test or do you keep an eye on blood pressure? Are you eating well and staying hydrated? Lots of things can cause dizziness other than a low heart rate. 

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