Disappointed

Hi - I am a new member and had a dual chamber Boston Scientific pacemaker implant last Friday (17 April). I am 53 years old and was reasonably fit for my age - played squash, football, running, hill walking etc.

My pulse has always been lowish at around 55 resting sometimes dropping to low 40's. Started with palpatations 9 years ago and told I had 1st degree AV block. Had a period of dizziness in May 2008 and rate wouldnt budge from low 40's for a week. Ended up wearing a 6 day event monitor 3 times. First two monitors picked up 2nd degree AV heart block type1 whilst asleep. The third picked up type 2 second degree type 2 block and a period of venticular standstill, again when asleep. I wasn't suffering from feeilng faint but in view of what monitor had shown the consultant decided I needed a PM urgently.

After having the PM impant a feel a lot lot worse. A persistant sensation of missed beats and thudding in the chest. Feel breathless after just moving around the house. Went back to hospital on Monday and the PM settings were adjusted. Apparently I was/am feeling the pacing and am also getting early beats followed by a compensatory pause. I also have a long P R (?) interval. The Unit had paced 3% of the time since it was fitted. Since the adjustments I have felt marginally better but after the slightest physical activity at all the "missed beats" sensation comes back. Have been for a couple of short walks (about a mile) and heart rate up to 80 and loads of missed beats, heart thudding away and a bit breathless and dizzy. I feel totally unfit and as though if I tried anything really active I would have a heart attack.

When the PM was implanted I was in for a long time - about 1hr 45 - and the doctors spent what seemed to be a long time sorting out the settings.

I am quite dejected as I had thought whatever problems I had would be resolved and I would feel a lot better (not that I had felt unwell before) and more energetic. I feel as though I would be better off without the PM out although I realise given the diagnosis I wouldn't be.

As anyone alse experienced similar problems or been in the same situation. Is this normal and does it get any better? Any advice, ideas, or suggestions would be very welcome.


Many thanks


Pete

6 Comments

It will improve

by Hot Heart - 2009-04-22 04:04:12

Hi there, I had absolutely no idea that there was anything wrong with my heart, went to private hospital for a bit of vanity plastic surgery and was whisked away to an nhs hospital as an emergency and was fitted with a pm, told I had 3rd degree heart block and a pulse of about 30bpm.

To say I was shell shocked was an understatement. I'm 55, and was really fit and healthy, regularly went to the gym, veggie, danced loads.

After the pm was fitted I felt dreadful, no breath, no stamina, thought my life as I'd known it was over, Became really down and depressed, put weight on and wondered why the hell I'd let them inplant this THING into me.

It's been 5,5 months now since I got my pm, I've recently started to feel sooooooooooo much better, loads of energy, started long walks again, gardening, dancing and am now ready for starting back at the gym.

So just stick at it, it takes time, but my cardiologist told me that I could have just passed out and been gone any time, I was lucky it was found.

Good luck

HH

go back

by Tracey_E - 2009-04-22 07:04:05

Keep on them! It often takes several tries to get the settings just right. They start with their best guess but that's rarely what we need, and when they make changes they like to do them in small increments. Be patient and give them a chance to tweak it.

Also, give your body a chance to heal. It's been less than a week! Every time your hr dropped low, your organs were deprived of oxygen. It takes 4-6 weeks to get your energy back, some people take longer than that depending on why they got the pm and overall health. Your body needs time to heal from the surgery, get used to this new gadget, and your organs to recover. You'll bounce back, give it time.

Me too

by sputnick - 2009-04-22 09:04:35

Hi Pete,Like you I was diagnosed with 1st degree hblock, 2nd degree hblock (type 1 wenckebach, and significant pauses of up to 10 seconds. Also like you I
felt very strong thudding and lots of missed beats and this made mr feel really anxious and fed up for a while after. However, I am now 12 weeks on and do not seem to notice either as much as I did then. Maybe I have just got used to it, but most of the time I 4get I have a pm in, wheras at the beginning I was conscious of every beat, especially at night!
I was told that you feel the heartbeat stronger after if you pace ventrically more than if you pace atrially. I now feel so much better and have so much more energy and I hope you soon feel like that too. Just look after yourself and take things a day at a time
Best wishes Jan

Pauses and extra beats

by Rodrigues - 2009-04-22 12:04:22

Hi Pete,
you are not alone, like you I was very active, went for a regular check up no symptoms ,wore holter 24hr which showed that my heart stops between 7 and 10 seconds and only in my sleep as well.PM implanted the first 5 months no problems then all the fun started ,missed beats extra beats and as you mentioned worse when I am active. I had a sonar-scan yesterday to check the heart muscle and valve working's all is OK , came home with a 24 hr holter again . As Jan said you tend to forget you have a PM therefore sometimes don't really pay attention to those missed /extra beats . I will keep you informed when my 24hr holter results come back and what my electrophysicist says.
Don't give up ,it could be a simple adjustment on PM , I'm not giving up on my side till I get answers or a fix for this.
All the best.
Francisco

It Takes Time

by NWGirl - 2009-04-22 12:04:49

Hi Pete - I am a 60 year old woman, and am one month out from you - had mine installed on March 17th. I, too, was pretty active without it, and I expected miraculous and immediate results. I am learning that it takes your body (not to mention your mind) awhile to heal and accept the pacemaker.
I was feeling my pacemaker kick off quite a bit, and also fluttering when I tried to walk. Yesterday, at my second checkup, my doctor had me jog in place in front of him, with the computer checking my pm. Yes, the pm started kicking in and taking over, (there was the hard evidence on the screen right in front of me) and while it was a freaky feeling, it made me realize that my heart was not working right before (even though I thought I was pretty fit) and now it is making it work better. I, too, have had a hard time accepting this piece of metal inside my body, but have decided to love the fact that it is letting me live, instead of having my heart stop at some inappropriate time (like sleeping or driving.)
I have to say that all the weird kicks and flutters and tweaks are settling down some, and I think as our insides heal up, and our body accepts the pm, things get better. Also, I went through a few weeks of on again/off again depression afterward (and I think you'll find a lot fo folks on here that have experienced that) and it too will moderate over time. So keep your chin up. Give your body some time to heal. Find some quiet activities that you never had time for before, and use this time to get involved in them, rest up and heal. It will get better.

Best of healing to you.
NW Girl

Those "skipped beats"

by ElectricFrank - 2009-04-23 12:04:55

You mentioned a skipped beat followed by a compensatory pause. These are what is known as PVC's and while they can be uncomfortable they are benign. They are caused by some sort of irritation of the heart wall that initiates an early beat. This beat happens when the ventricles haven't had time to fill completely so it feels like a skipped beat. This is followed by a longer time interval in which the ventricles fill more than usual. When the next beat happens there is a larger ejection of blood which gives that feeling of a thump.

They may settle down after a few weeks. Remember the leads from the pacemaker were screwed into the heart wall and it may be complaining a bit. Also, the adjustments can have an effect.

It is a good idea to ask for a copy of the pre and post programming report at each checkup. Several of us here can help you understand them and make suggestions if problems persist.

frank

frank

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