It is all so disjointed. Its making me worse i think.

[tiredandconfused]

The hospital hasn't written to my GP with any information on my diagnosis of persistent AF. I had to take my discharge papers which detailed the prescribed meds to the doctor so I could get another supply. I was supposed to be on an urgent referral to an anticoagulant clinic because my doctors doesnt normally monitor INR. I havent heard a word, even though I have phoned and asked them to confirm they had the referral. I have to leave messages with the cardiovresion nurse about what my INR result is, which I cant get because the receptionist isnt allowed to give it to me until a doctor sees it. The doctor then complains that I should be calling to get the result. I leave messages once i do know with the cardioversion nurse on her answer machine with that week's INR but I dont actually know if she gets it, again doesnt ring me back when i request it.

this may all be normal for all the clinicians, but for me this isnt, I'm tired, weak, breathless and fed up with feeling like my heart is jumping out of my chest. If only there was clear information that says what will happen and when. I havent even been given a record book for the warfarin! I'm writing it down on my cardioversion letter - which just says once i am in theraputic range for four weeks they will contact me about when it can be done.

I know i'm not the only patient, I know there are far worse off than me, I saw it when i was admitted twice with this damn thing, but a bit of information, timescales and advice wouldnt go a miss. Sorry whinge over

[Hidden]

You're describing what it's like for some when you have an arrhythmia. It's like a black hole, especially at the GP end. I now manage everything myself, thanks to knowledge gained from this forum. I have the phone number of my cardio/EP's secretary and so "direct" contact with him. If my pills aren't working I phone her and she gets in touch with the EP and I have a new prescription within a day or two usually. Last time I had a monitor-fitting appointment arranged by the hospital for the day after my review with the EP of the monitor results!!! So I phoned and suggested they do it the other way round . They had a shortage of monitors, so that resulted in the appointment being put back 3-4 months! So again, phoned the EP's sec and she got it changed. I have to monitor and suggest changes to my Warfarin dose because the computer they use does not forecast, it just waits till it's too late then reacts.

I think disjointed is an excellent description. Sorry, now I'm whinging, but being a farmer I'm used to it.

Koll

[pip_pip in reply to Hidden]

Sounds good. When I contact my EP secretary about anything I get standard answer "See your GP". Good luck to you.

[CDreamer]

I think you have a perfect right to whinge with that lack of coordination and complete insensitivity to your plight! Whinge away.

I hope you will put in a complaint. Ring the AFA, they are brill at helping you ask the right questions etc.

[dedeottie]

Once again this all rings so many bells for me and probably loads of other people out there. When I was trying to chase up important appointments with my G.P. following 3 mini strokes the receptionist told me to be patient as they had lots of cancer patients to deal with as well as me. When I explained that I may have a stroke if I didn't get anticoagulation soon they started running about sorting things out! You have to be proactive at a time when you are feeling vulnerable and that's hard.It is a good idea to ask the A.F.A. for help and to come on here for a moan whenever you feel the need.x

[Ang3lc4ts]

Hello tiredandconfused, and no wonder, your treatment I am afraid is typical of lots of us on here. I agree with CDreamer and dedeottie, ring AFA. Since finding this site last year, I have managed to see an EP, get all the treatment needed and was given a Pacemaker last week and all that within 4months having had AFib for 12 years and getting worse by the day. I thank my lucky stars I found the AFA and particularly this site.

Hope you get sorted soon, let us know how you are getting on.

Di

[Hidden]

Yes, my goodness, you deserve to have a whinge, you've been treated very badly. All that on top of AF is just too much - I do hope you call the AFA and ask them for advice, really you deserve a lot better and hopefully you will get it soon. If you really get nowhere, perhaps a change of doctor might help - you could ask round to find someone sympathetic and efficient.

Lis

[Dodie117]

It sounds like you are at least on warfarin. You might want to look at getting your own machine. I did this and feels like I am in control and also gives peace of mind.

I had huge problems in the beginning getting warfarin. In the end I went to a&e when I was having an attack. They gave me a prescription for warfarin and arranged an appointment with the anticoagulant clinic.

I have since had an ablation and it seems to have worked so don't dispair. Things can get better and you will get better at managing this condition.

[jondeanp]

I agree I found it very confusing and disjointed. GP/ Cardio nurse/ Anti-Coag nurse/ Path lab etc i sometimes didn't know who i was actually speaking to but i tried to drive things myself rather than sit back and wait for things to happen.

Although dont get me wrong i did spend periods where i wasn't sure if the right people knew i existed

If you are feeling like you are hitting your head against a brick wall there is the Patient Advice & Liaison Service (PALS) which may help. Although i've never had to use them so cant comment on their service

[tiredandconfused]

Well i actually thought i was getting somewhere today. Yesterday I phoned the anticoagulant clinic and again had to leave a message. I asked them to ring me to confirm they had indeed had the so called urgent referral. This morning I had a lovely nurse call me to say they are waiting for the doctor to confirm information on when i started warfarin,, but that she would ring and chase the doctor and ask them to fax it over. I explained that i could give that information, as the doctor hadn't yet received my notes from the hospital admissions. She said sorry the doctor has to confirm it. But seeing as the doctor doesnt have my notes from the hospital i dont hold out much hope.

So it was left she would call me this afternoon with a view to getting me into the clinic on Monday. And what happened? Yep you guessed it. No phone call!