Need to know the future.

[cali111]

It has been a while since posting as my health declined and I was sunk in gloom. After my ablation was stopped last September due to a clot found in my heart, and this was still there 6 weeks on, my EP has gone silent. As my breathlessness has been severe I do not go out except for shopping as there is no joy in gasping every few steps. My GP and the local cardiologist won`t look at helping any as I am under the care of the EP. Where do I go? Other issues with my health are now arising due to lack of exercise and I don`t know the future. This is something that is very important to me now I am 73yrs old and the sole carer and advisor for my adult autistic son who lives with me. I have to prepare him for the future without me and this is difficult.

I have written to the EP and asked for an update as he only does an outreach clinic every three months in this area, do you think this is over worrying or a sensible thing to do?

[10gingercats]

Well, from a strickly common sense point of view I agree this all sounds very worrying and not over worrying.Maybe you could approach your GP regarding your other health concerns and while there discuss the heart problems. And, take someone with you,preferably to listen/and note while you concentrate on tackling the GP.I entirely agree with you that you do need to know soon where your life might be going. I am sorry if this is not much in the way of practical help but this site has lots of good well informed people contributing to it so hang in there and goodadvice will come.

[Rellim296]

So sorry you have such difficulties. It seems to me that you are absolutely right to be taking some action as it's to move you forward. There are surely several options. One might be to move to a different EP if there is an alternative. Is it too difficult for you to travel? Is a private appointment a possibility either with your original EP or another? Yes, it's not cheap but can be good value for money. Are you getting treatment for the clot that is being tedious?

I'm sure you have done the right thing by contacting your EP, but I think your GP could be doing the same on your behalf. 73 isn't old - you are perhaps feeling you're almost in your eighties or nineties because things haven't been going your way - and it's well worth finding out if you could be better than you currently are and moving in that direction.

[cali111 in reply to Rellim296]

I have approached my GP and I have no doubt that she could write on my behalf but I want an answer from the horses mouth - as you say, and not a lot of soothing and vague comments. As I said I have asked about further treatment for my clot but the GP won`t interfere with the EP as he has the last say. The QE in Harbourne where I was supposed to have my ablation is the closest hospital who do this procedure in my area of Telford. I am hopeful of getting clarification from them soon. I have not had any treatment for the clot but was changed from Apixiban to Warfarin, and I receive no drugs for my AF except Digoxin. This is not their fault as I am very sensitive to all side effect of drugs and am a nightmare to treat. Having said that I feel that they leave me in the dark as to their plans - if any. If they cannot treat me further I want to know! You are right I often feel older than I am, and at present they are investigating my spine which I suspect is a result of the reduced excise so I have moved my stationary bike into my bedroom to motivate me to do more, and so it does as I feel guilty if I don`t use it. ha ha!!

[Rellim296 in reply to cali111]

Yes, you need to know where you are. Sometimes doctors assume that you must be doing fine if they don't hear from you and it can be well worth asking if there's room for improvement as a small change can sometimes make a big difference. I wonder if your EP is thinking your GP is sorting you out and your GP is leaving you to your EP. Anyway you have stirred the pot!

I have persuaded my other half to use his bicycle as a static one as opportunities to go out on it are thin on the ground right now and he has made a 'table' for it and reads as he cycles. He is pleased at the number of miles he manages to do.

[checkmypulse]

I note you have written to your EP, I was going to suggest telephoning the EP's secretary. I have done this at this at the QE and always got a positive and rapid response from the EP himself. I see from your previous posts you queried why they switched you from a NOAC to Warfarin. Was that prior to your scheduled Ablation? I know at the QE they prefer patients on Warfarin prior to the procedure, one reason is it can quickly be reversed if necessary.

[cali111 in reply to checkmypulse]

I did try telephoning but it she was not there so I left a message but no one rang back so I decided to write. As it is Christmas I don't expect an early reply. You are right that the change to warfarin was for the ablation but the switch was not made until the ablation was stopped so I am at a loss.

[checkmypulse in reply to cali111]

I'd be back on telephone, NHS letters, in my experience anyway, seem to get 'stuck' in a time warp. You need to ask a few questions. Best wishes

[cali111 in reply to checkmypulse]

I did have a reply but it was very terse the EP would not ablate if I returned to Apixiban or see me again in clinic. So that is straight if nothing else.

[Barb1]

I had an ablation stopped because a clot was found. I was put onto warfarin from a NOAC at a therapeutic range of 3.0 -3.5. After 6 months I had the ablation and all was well. You need a date to try again. I also completely understand about knock on effect with mobility stamina etc. You can only do what you can for now. Make plans for your sons future and worry about planning exercise after your ablation. Well those are my thoughts anyway.

[cali111 in reply to Barb1]

Thanks for your reply it has given me hope again. I did send a message to my EP at the QE in Birmingham to see if I could go back to Apixiban from warfarin but I don`t think he appreciated it as the answer and I quote, "he will not do an ablation if I go that route, and will not see me in clinic again!" so that being said I have to stay on Warfarin.

[Barb1 in reply to cali111]

My EP always put me back on warfarin for the ablation but he's happy for me to change back to a NOAC after as long as he does a TOE after a few months. I am having it on Saturday