Referrals

[sunigirl]

Hi Everyone. I have had AF since 2002. 3 unsuccessful ablations a multitude of drugs with scary side effects and then a pacemaker in 2011.

Still have AV node intact. I now take 10mg Bisoprolol and 4mg warfarin.

I see an EP at Wythenshawe, well, when I say see him I have only seen the same one 3 times in 11 years. I have pacemaker checked every year now. AF approx once per week between 12 - 18 hrs. I want to change cardiologist as I feel on scrap heap. Do I do this thru my doctor. Sorry I have rambled on. Thanks.x

[jennydog]

Would you be able to travel to the Liverpool heart and chest hospital easily? I believe that you can choose to go where you want, via your GP, but convenience has to be a factor. There is a station at Broadgreen which might help. Certainly a second opinion might be helpful.

As a matter of interest, are you 100% dependent on the pacemaker? If so, why did they not ablate your AV node? I am interested because if my ablation is not successful then I will have pace and ablate.

I'm glad that you are taking positive help to manage your condition. Good luck.

[sunigirl in reply to jennydog]

Hi jennydog. This is third time I have written reply and unsure where others disappeared to. When pacemaker was fitted they wanted to see if it made an improvement without AV node ablation. It didn't. Now I don't feel I want it done as its not a cure. Truth to tell I am scared as there is no going back. Thanks for info. Best Wishes.

[Kjporten]

Goodness you are brave. I think you should shop around for a doc you trust. I am in the US so no good ideas just positive support. Goodluck

[sunigirl in reply to Kjporten]

Thank you Kjporton for your support and good advice.

[ronz11]

Hi there. I've had pacemaker then AV node ablation last week. I've had mitral replacement 10 years ago following this I still see my cardiologist in a 6 month basis. I think if you have the right to ask your GP to refer you to a different cardiologist. In my experience I feel confident when my cardiologist explain to me about my condition and treatment.

Just wanted to echo Jenny's question, why did they not oblate your AV node? All the best.

[sunigirl in reply to ronz11]

Its great you have a cardiologist who is interested in you and one you are confident with. I have seen so many 'underlings' who don't know me that I feel its a waste of time going. I feel AV nose ablation is final, no going back and I am scared. Thanks.x

[sunigirl]

Hi Ronz11.

I did mean AV node ablation. Hahaha.

[ronz11]

I can totally relate to how you feel. I can only tell you my whole experience. After I had the pacemaker in 6 weeks I was due for the AV node ablation. The morning of the procedure I was still indecisive and I talked to the EP and we had a a discussion. He was very empathic and told me that we don't have to rush the ablation but if I continue experiencing AF even on Bisoprolol 10mg and Digoxin 187.5mcg AV node ablation is the treatment for that. I was so scared that morning but been brave to go ahead as I thought how AF affected my life for the past year. The procedure didn't take that long as in my case it was straightforward AV node ablation my heart own pacemaker was defective. I was also reassured that pacemaker is extremely reliable. My 2 heart procedures were done at St Thomas Hospital and it's a very good hospital.

Following day, I was sent home and although I get some episodes of fast heart rate I was told by my GP that it is too early to say that AF came back. He said to give time to recover.

It is your decision and you know yourself better. Wishing you all the best.

[rosyG]

I think the Royal Brompton is excellent- can you get to London? I think they have reasonably priced (for London) patient's accommodation if you need to stay over.

[sunigirl in reply to rosyG]

Thanks RosyG . I will definitely look into this.

Kind Regards.

[sunigirl]

Hi Ronz11

Thank you so much for giving me a more positive view, It has given me food for thought and I will see my GP for a referral. I appreciate telling me your story and I wish you all the best.

Sue

[mumknowsbest Volunteer]

The av node ablation does not stop the af, it just stops the symptoms. I found I could still feel the fluttering in my chest, but my pulse remained steady and I could keep going.

Eileen

[sunigirl]

Thanks Eileen. Best Wishes Sue.