Progress or not!

[Cypbill]

It's been a wee while since my last post a quite a lot has happened; in late December I received a call from the hospital at very short notice offering me the chance to have a pacemaker implanted. This having been considered absolutely necessary as the previously implanted Reveal Device had confirmed what I have been aware of for many years. My heart stops frequently whilst I'm asleep, confirmed as, worst case recorded; 32 times in one night for periods of up to 6-seconds.

The pacemaker procedure whilst not the most pleasant of things to undergo, went reasonably well with the whole thing taking around an hour including removing the Reveal Device. For 5-days after the pacemaker implantation I was in perfect sinus rhythm with a steady pulse of 62, then on Christmas Day someone flicked the crazy switch and off I went. At my next and most recent checkup at the pacemaker clinic it was discovered I had been in constant AF for 27-days with a pulse rate of 180-190.

The hospital admitted me overnight and administered Bisoprolol and Digoxin and arranged for a Cardioversion which was carried out 5-days ago. For all those out there wondering, it was straightforward and painless but more importantly successful albeit for only 4-days plus. This morning at around 4.00am I awoke with the beast banging away and still on form as I type, back to Bisoprolol and Digoxin on the advice of the hospital, next appointment with the EP "May" ..... unbelievable but true.

In a nutshell, I'm bitterly disappointed I was not offered cardioversion years ago, I feel that I have been denied the chance of some normality for 7-years (up to asking to see other cardiologist for a second opinion) for no reason other than questioning and ultimately disagreeing with the first "Experts Opinion".

Sorry for the moan but I'm really disappointed.

[rosyG]

I'm not surprised you are feeling down. There seem to be two things here- firstly you needed the pacemaker and I hope the stops have all disappeared.

Secondly you had Af for a long time at a high heart rate. I thought pacemakers sent data wirelessly so wonder why this wasn't picked up?? Perhaps a different type of pacemaker??

The good thing is that with a pacemaker you can have meds to control the AF but it sounds as if you need a much sooner discussion with your cardiologist about this-- I would press for an early appointment.

I don't think cardioversion would have been the answer as it doesn't stop people's AF for very long so don't dwell on that aspect but concentrate on getting the best treatment now. As you've found out- with a highHR for a month- AF isn't life threatening for you- but the stops could have been and you've got that sorted now.... keep us posted

[Cypbill in reply to rosyG]

Thanks for your prompt reply, my particular pacemaker doesn't have the wireless reporting facility and its only when I attend the clinic any issues are highlighted. As for the pauses whilst sleeping, these have been eliminated entirely.

I have asked, this afternoon for an urgent appointment with another EP or cardiologist as I am unhappy to wait until May, promised an answer at my next pacemaker clinic appointment on Thursday, fingers crossed.

Thanks again.

[rosyG in reply to Cypbill]

That's good- be very insistent as you will be able to prevent future difficulties if you get on the right meds now. Good luck and let us know how it goes on Thursday...

[Pita in reply to rosyG]

Hi RosyG, I have a pacemaker, and it doesn't have the function of sending any info wirelessly to the pacemaker clinic, I go once a year now for a pacemaker check

[Mike11]

I think this shows the advantage of going for a private consultation early on so that you have a second opinion and time to discuss all the options for your condition with an expert, something the NHS obviously hasn't got the time or resources to deal with. There might have been little difference in the final outcome but you would be feeling happier about it now.

Why not book with a top EP privately now?

[CDreamer]

Commiserations. My experience was very similar.

Unfortunately there was no EP service in my area when I was first diagnosed and I also went about 7-8 years without knowing the possibilities- and that only after I found and joined this forum.

But we are where we are and now with that hindsight and knowing what Is possible my mission is to help others be informed - as much as I can - and to signpost so others can be better informed.

Thankfully, there is now an excellent Arrythmia clinic in my area and more knowledge and more options.

I do hope the pacemaker helps you, I am currently considering that option.

We are where we are so I am looking forwards rather than back - but I fully understand your anger and disappointment and also how much trust we can often mistakenly put in experts.

I am the expert on me - my doctors are the experts in diagnosis and treatments - or should be!