new and confused

[horseblister]

I am new on here, I was diagnosed with AF when I went into hospital with appendicitis in October 2014. I am also asthmatic and have type2diabetes so because of a bad chest have been told in the past I cannot have general anesthetics. It was bad enough having the appendicitis with all the scans x-rays etc but to be shouted at one night that I had AF and had to keep still scared me even more, how can you move about with drips in both arms. Well Ive had to go on warfarin and after what I call trial and error by the cardiologist I am now on Diltiezem/Tildiem 360mg (two tablets) I have had two cardioversions, the first did not work the second only 13 days. Also Ive had ECGs,Week long ambulatory ECG, 24hr ECG, Echocardiogram. After going to the clinic periodically since 2014 I have now been discharged, with the words if you need anymore information or if you dont feel well see your GP. I still have AF everyday so I feel let down not to have anything in writing about my condition.So I rang my surgery only to be told I could have a telephone consultation on Monday 4th July. All the time I was seeing the cardiologist he never once listend to my answers when he asked how are you feeling, I have been very tired, short of breath (different feeling to asthma) dizzy, confused, the list goes on. I am very grateful to have found this site as it has shown me I am not alone. Thank you for being here. Sorry for the long rant.

[BobD Volunteer]

You need to see an electrophysiologist rather than a normal cardiologist. You wouldn't ask your plumber to re-wire your house now would you. Read all you can from the AF Association main website and ask questions here and we will try to help. Welcome to our world by the way.

[horseblister in reply to BobD]

Thankyou for this information, I shall put it to my GP if he will listen.

[Finvola]

Hello and welcome to the forum. The best person to see is an expert in the electrics of the heart - an electrophysiologist (EP) who can assess your condition and your needs. The main AFA website is the best place to start - there is a link to a list of EP's who have registered with them. That list is a guide as there are many other EP's across the country who can be identified by contacting the hospital of your choice and asking.

Normally referrals to EP's are from a cardiologist on the NHS and waiting lists can be daunting, depending on where you are. Alternatively, a GP can refer you directly as a private patient (costs about £200 - £250) for the fastest consultation. Many of us have taken this route, returning to the NHS after the initial consultation.

Once you have enough information, do talk to your GP about your concerns about your future treatment. Write down points for your telephone consultation - it is the case that we do have to be well informed about the options available and very often have to be assertive when we least feel up to it.

Best wishes - treatment and help are available - read and read and do keep posting. Like you, I found this forum when I felt alone and by-passed by the system.

[horseblister in reply to Finvola]

Thankyou for all the information, I hope I can get my GP to listen. Dont know yet what will happen.

[PeterWh in reply to horseblister]

If you think that the GP is not likely to listen then write down the key bullet points on a piece of information sand in priority order. You could also contact the AFA Patient Services Team to help.

[horseblister in reply to PeterWh]

Thankyou for that information, I have started to write down a few things, I shall then go over them and prioritise them. Rachel admin has already been in touch.

[PeterWh in reply to horseblister]

Brilliant

[Rellim296]

He there horseblister. You have found the right place for support and information, and no, you aren't alone at all. There are lots of us with AF - although it's a condition that affects people very differently. Some people have it all the time and some get it occasionally. It is really just a problem with the heart's electrics, as Bob says, and it can affect anyone, including very fit people who have perhaps overdone it a bit.

There are lots of ways forward, but you need someone more sympathetic than whoever you have come into contact with so far. Treatment of AF has come a long way in recent years and it would seem that not all GPs and cardiologists are up to date. There are, for example, alternatives to Warfarin which don't have dietary implications - handy for a diabetic.

I'm sure you will find there's all sorts of useful stuff here and a range of opinions.

[horseblister in reply to Rellim296]

Thankyou for the information, no one has discussed if I can change off Warfarin or not, I shall ask about it.

[Finvola in reply to horseblister]

Horseblister - there are good factsheets on the main AFA website describing the alternatives to warfarin. LOok on the left hand side under publications - the drugs are referred to as NOACs and are called Apixaban, Dabigatran, Edoxaban and Rivaroxaban.

[horseblister in reply to Finvola]

Thankyou for that information, I am still finding my way arround the site.

[Hidden]

We have recently published a new booklet explaining all of the anticoagulant options. You can download a copy from heartrhythmalliance.org/fil...

Regards - Rachel - AF Association

[horseblister in reply to Hidden]

I have downloaded the booklet, thankyou very much. I now which questions I shall be asking my GP on Monday.