CRT Failure!

[Wrighty39]

I like Ogilvie have a CRT device, mine has a defibrillator. Mine has been a failure since it was inserted Oct.2015. Since insertion I have suffered from AF, had a heart attack, became totally exercise intolerant. By the time I saw my cardiologist following insertion, 20/12/2016, my pulse rate was 70 to 74, I could walk only 50 metres. She did nothing other than to give me an appointment for 12 months time. During the year after the insertion my shortness of breath was put down to a small LV. From being very young I have raced bicycles having a number of wins. You don't win bike races with breathlessness. In that year nothing was done to re-programme the pacemaker although promised at insertion. Following the 'consultation' in Dec.2016 things got so bad that I persuaded a nurse in pacemaker clinic to see me. She had me walking the Hospital corridors. The first three walks were very painful after the first 50m, then with some info I had got from Boston Scientific and nurse's skill the forth walk was done without any breathlessness or pain. There was a problem the pulse was now at 160 bpm which was very high for walking (115-120bpm?) and it would not go below 70 bpm. We decided to accept what we had got!

Nothing of substance has been done since apart from the CEO of the Hospital insisting that I go through my GP. Clinicians long ago stopped answering my questions. I do have Latitude by my bed but object to not getting any info merely a thank you for being co-operative.

I am surprised, Ogilvie, that your clinicians were not aware of the difficulties they faced during the insertion before planning it. In this respect my insertion could not be faulted.

[Hidden]

Hi Wrighty39,

You certainly seam to have a bad time of it. I have to say that our experiences are in the minority. Most CRT's are inserted without issue although a few people have commented with issues over setup.

You didn't say if you were based in the UK or not. Certainly the feeling I get is that in the UK issues we are having are rare.

As to my particular problem. I do have the feeling that human error may be the cause however I have to say the Hospital has pulled out the stops to get me in again sooner than I was expecting - lets hope round 2 is more successful!

[Wrighty39 in reply to Hidden]

Hi Ogilvie,

Hope your second time goes well. Make sure they do the pre-op thoroughly and know what is in there. Too many clinicians don't seem to realise we are all unique. I've had three insertions and the only 'improvement' is that I no longer have syncopes which is a very small gain for losing a life worth living.

[Hidden]

Do you mind telling me if you are UK based?