Still no sign of a cardiologist

[jayedeebee]

I wrote about 2 months ago concerning my visit to the hospital and the fact that I didn't get to see 'my' cardiologist. I had many replies which were very supportive and agreeing that I should have seen the cardiologist and not the cardiac nurse at the hospital who was unable to make a decision herself and had to revert each time to the cardiologist (the same one that couldn't be bothered to come into the room and speak to me herself)!

Anyway, that is an old story now. I still haven't seen a cardiologist.

Last week I was in bed with the 'flu. Rarely have I felt so ill. The phone rang, it was the cardiac nurse offering me an appointment for this week. I explained that I had the flu and if I survived the day, I would certainly give it some consideration at a time when I felt well enough. She pushed for an appointment the week after and again I gave her the same response. I asked her when i was going to see the cardiologist and she advised me that the cardiologist was aware of me and was overseeing my treatment (well that's alright then)!

The next day a letter arrived from the hospital (I was cc'd on it), telling my GP that 'this lady's 24 hour tape show atrial fibrillation with a mean rate of 90bpm, which I believe is on the high side. The echocardiogram shows normal biventricular systolic functions. I believe she is on Bisoprolol 5mg bd and Diltiazem 120mg RD od. We need to increase this further.........we need to increase the dose of Diltiazem and possibly even reintroduce a dose of Digoxin.....'. All this and I've never even met the writer!! How about that? I'm furious that someone can do this without having ever met the person she is throwing drugs at. Bisoprolol leaves me breathless and tired. My feet are frozen constantly (something that has never happened to me before).

I was going to write a letter of complaint after my earlier visit but erred on the side of caution and thought it best to wait until after the tests had been carried out; I felt sure then that 'my' cardiologist would want to see me to discuss the treatment plan. I shall be composing and sending the letter as soon as possible.

Is this normal? Or is it just me who isn't worthy of being seen by a cardiologist. Is my AF so insignificant that no one really gives a hoot about me?

One other questions if anyone can help. What does 'bd' mean? As in Bisoprolol 5mg bd. Does it mean twice daily?

So sorry this is long winded, but I'm so angry and more than a little upset about being made to feel this way.

[dedeottie]

When I lived in Lancashire I was never even referred to a cardiologist neither did I see an arhythmia nurse. I was under the sole care of my G.P. I was eventually told that this was because my A.F. was paroxysmal and because the rate didn't go over 100.

At the time it was not explained to me that if my A.F. lasted longer than 48 hours and the rate increased, I should go back or go to A and E. Consequently I thought this was my cross to bear and carried on with life the best I could. My A.F. continued to progress and I had 3 T.I.A.s before I was given warfarin. Even then no one referred me to a cardiologist or E.P.

Luckily I moved to South Wales where my care has been excellent despite the bad press and long waiting lists.

I really believe that anyone diagnosed withA.F. should see an expert so that all these things can be pointed out and talked about.

My own arrhythmia nurse is fab but she always takes the advice of my E.P. and so there can be days before I get answers to questions. Luckily I also see my E.P. so I feel all angles are covered.

I don't know what happens in other areas of the country but it would be interesting to know. X

[jayedeebee in reply to dedeottie]

Thanks for the reply. I'm in Doncaster under the care of the Doncaster Royal Infirmary. Frankly they don't have a great reputation, so I shouldn't be surprised really. Yes I agree, it would be interesting to see how others fare within their own areas. x

[BobD Volunteer]

I think I have said before that you need to see an Electrophysiologist. Look at the main AF-A website under patient information where you will find a list by area of rhythm specialists. Then aswk you GP to refer you to one near you. If you can't get an NHS appointment maybe a private one after which you can witch back to NHS )always assuming you are in UK. Do not put up with this.

Bob

[jayedeebee]

Bob she is an EP, which is why my GP wrote to her, I specifically asked him to do so. I haven't fully recovered from the flu yet. But will phone this cardiac nurse and my GP to see what can be done. Frankly, I'm not sure if I want to she HER at all now. There's another EP in Doncaster according to the listings, so will see what the GP has to say. The cardiologist clearly doesn't want to see me. x

[Finvola]

That's pretty shoddy treatment from any health professional. I wouldn't bother her any more either and I certainly wouldn't trust a diagnosis and treatment based on hearsay.

Do find a proper professional who will give you the respect you deserve and the treatment you need.

Best wishes.

[meadfoot]

Hi Jayedeebee,

I am sending you a private message, please look out for it.

[iris1205]

GEt answers to your questions, don't give up until you do! Courage!

[Bryonny]

I am not surprised you feel angry. I felt angry about the way I was treated about 18 months ago and transferred my care to another EP who has been great and took the time to explain things to me. You are entitled to a second opinion and hopefully your GP will support you if your decision is for a referral to another EP in your area.

I have found some situations in hospital challenging to cope with and one day I may write it all down as it may prove cathartic!