EP letter

[ruskin10]

Hello everyone. Yesterday I received a copy of letter sent to my GP from the EP I saw at Liverpool Heart and Lung Hospital, Dr Modi. I am due to see him again in August. In it he said he would discharge me if the Flecainide did ok for me, if it didnt he would put me forward for ablation. I was disappointed with this as I didnt want to be discharged yet. Taking the Flec has been rough for about a month now, but Im getting on better with it these last few days. The ectopics have been much less, and the daily rumbles of short AF burst have only lasted seconds. Has anyone else had this experience being discharged so soon. Im glad to have seen him and felt I could tell him how it really affects my life so much. Pat

[AnticoagulateNow]

Flecainide is not an alternative to ablation therapy. One tides you over, the other may well cure you. Flecainide may work for you at the outset but the drug's effectiveness will almost certainly fade in time. If you want an ablation, then sooner rather than later is the key to successful therapy. If you accept a discharge from Liverpool, they will be delighted; one less on the waiting list. But it probably won't lead to the best outcome for you. Demand better.....

[ruskin10 in reply to AnticoagulateNow]

Thank you, I did think that the sooner the better, Ive had it 2 to 3 years now. I will tell him this is what I want and see how it goes.

[PeterWh in reply to ruskin10]

As my GP said soon after I was diagnosed that any option that equates to not having to take some drugs is one definitely worth investigating and having it done if suitable and if accept the small risks. She was of course mainly talking about ablation.

[jennydog]

Hi Ruskin 10.

Can I suggest that you keep a diary of all your medication, symptoms etc. This will be a useful aide-memoire for you and will illustrate any deterioration.

I also attend LHCH. I give them a copy of my diary. I record my blood pressure readings so that they can see that I have 110/75 ish readings at home. Whenever I am confronted by one of their machines the readings are through the roof.

I had an ablation Aug 2014. They are to see me again in Sept 2016 for a routine check. I am sure that they will keep you in the system if you make a request. If you are anxious than you must say so. Do not be brave. He who shouts loudest gets the most attention.

[ruskin10 in reply to jennydog]

Thankyou, yes I will ask to be kept in the system.

[NooNoo14]

Thanks Pat, your post and all the responses have helped me make a decision too.

I will see my EP on Thursday. I am seeing him privately (work scheme) because I was messed around so much by the NHS. I am also taking flecainide and the last time I saw him he said exactly the same thing re deciding not to have it done and I was in two minds as to whether I should put myself through a needless procedure if the drugs were doing their job. On the other hand I remembered people on here saying the AF generally develops from PAF to continuous and that the drug can stop working eventually so was really struggling as to what to do.

I also know I could have a limited time before other health issues kick in that will make having the procedure done at all very difficult. I also know that I have a limited time left at work and will lose my health cover when I finish. After reading your post and the responses, I am definitely going down the procedure route.

Thank you and good luck with your fight to get what you want.

Netty

[ruskin10]

Please keep me posted as to how you get on, best wishes. Can I ask how long you have been taking Flecainide? Up to now, for me it seems to be working keeping the AF at bay, but I have only been taking it a month so its early days.