Post Pacemaker care

• by Jane21
• 2015-08-24 07:08:52
• Batteries & Leads
• 2241 views
• 10 comments

This is my comment raised on an earlier post, but I decided to post it under its own thread here, as one or two folk, may possibly identify with some of my issues re having a pacemaker fitted.
Comment as follows:
I do still have a but, regarding my aftercare.
Tracey, you said what an excellent team I had and in the main I agree. However, there are aspects to my care I do not think are or were very good.
Initially when diagnosed and prior to the fitting, my condition was explained very poorly to me, my options and prognosis were not discussed properly. In fact the cardiologist broke the news by just sticking his head round the curtain and said you have heartblock, I'm fitting a pacemaker this morning. Prior to that I had never even heard of heartblock. I accept it was something of an emergency, but in the UK certain procedures have to be followed when consenting a patient and although the consultant reappeared shortly after, I think mine were sketchy. (There are 2 plastic consultants in my family, so I do have a little help there).
Once fit, I had a short discussion with the cardiologist whilst I was on the trolley and an angiogram was decided. I had to chase this up and get the appointment made. There was no follow up appointment with a cardiologist at all.
The pacemaker technicians saw me on the ward and tweeked the PM and that was it.
When I didn't feel well after a week, infact I felt worse than before the PM was fitted, my GP referred me back to hospital. I had a night in and was told I was ok. Well I would be lying on a bed for 36 hours. I wasn't really listened to and was made to feel like a bit of a timewaster.
Still didn't feel well if I moved much. Not ideal, as it is hard to run your life either from bed or the settee.
I rang the techies and insisted they needed to see me. They found my problem as far as the PM was concerned as soon as they put me on the treadmill. Basically my pulse soared as soon as I became active. So they tweeked my PM again, explaining the standard setting was for a much older person.
Ummm, helloooooo, do I look like a much older person,?couldn't they have seen that before I left hospital the first time.
So my PM was tweeked again and yes I felt better, but was still having issues. So I rang them back and said still not ok. By now I felt very much as though I was being a nuisance. They twiddled around a bit, talking to themselves (I kept hearing things like - it's missing a beat here and putting an extra one in there ) but no one actually talked to me. I had to ask if all was ok and they just said yes. The cardiologist was summoned and I was sent out to wait. I could hear them talking about me (not pleasant when sat in a corridor waiting) and I could hear the voices suddenly dropped, I felt as though I were being discussed in not too kind a light.
The Cardiologist came to see me, said basically all your problems stem from not being fit (I can accept that) and although beta blockers would help, did I want to go down that route. Obviously not, if it could be helped.
I told him I had had difficulty coming to terms with it all, he offered me counselling. I declined, it's just not a thing us Brits do. I will get my head round it all myself. But I do feel if a bit more time and effort had been taken in the first case, to explain and make sure I was okay with it all, then I wouldn't feel how I feel now.
To the medical teams that deal with this, it's routine and just a part of their everyday.
To the patients, it's their life.
I think a lot more time and effort needs to be spent understanding this. Certainly in my part of the UK.
I do accept not all folk will want as much info as I do, or to understand quite so much, but I would have thought the majority do.
Has anyone who has never suffered from total heartblock, let alone heard of it prior to having it, any idea how flipping scary it is, to realise without this little electrical gadget you would be dead - it would seem to me probably not.
Have they any idea how nerve racking it is when you feel rubbish and wonder if you're going to die?
It is hard to know when to ring someone and say I'm not ok. I mean lets face it, it's not as though we have any experience of this beforehand.
No one likes to feel they are being a nuisance, but then I'm not too keen at the thought of snuffing it at 55 either.
How things are handled in the States, may well be different (although we as patients are not), but no effort has been put into why I had total heartblock in the first instance. I mean the cardiologist said it was unusual in a woman of my age - end of conversation. They cure the symptoms, but don't seek to find causes. No real prognosis has been discussed. The technician just said my condition will worsen with age. What condition? I thought the PM fixed that. One hand seems to say nothing wrong with you now, go and lead your life, the other says - don't do that you have a PM fitted. I find that conflict difficult to assess.
There is a reason I have gone into this at length. If I feel this way, then a pound to a penny, others will too - I am hardly that unique. So I thought I'd share my feelings and possibly help someone else.
I did ask the techies if what I was experiencing was common, they said no. I'm not sure I believe them. I am quite a vocal person and don't suffer from white coat syndrome. Others are less confident than me (for that you might read bolshy :-) ) and so might not find it so easy to push and press.
I am going to post this on the noticeboard for others to read, just maybe, someone one will find my thoughts helpful.
Cheers Jx