What do I do now?: Wondering if some of you... - AF Association

AF Association
19,766 members24,154 posts

What do I do now?

DragonLady47
DragonLady47

Wondering if some of you wonderful people might offer some advice: Had Paroxysmal AF for five years and on Tildiem and Riveroxaban, but became breathless about four months ago - can hardly walk on the flat let alone up hills (and I live in a very hilly place). I eventually got referred to a Cardiologist, had some tests and explained that I was finding this very life limiting. I had 24 hour ECG and Echocardiogram which showed I am now in Persistent AF and have a severely dilated left atrium. He just put me on digoxin, didn't get back to me and just sent letters to my doctor saying only that I didn't have a follow up. I am quite angry because I stressed that I was finding this life limiting and wanted his help to get fit again (have been putting on weight due to not walking much and not being able to exercise). I'm thinking of asking for a second opinion - would appreciate your thoughts.

13 Replies
oldestnewest

Hi Dragon Lady :-) I am sorry to read of the deterioration of your condition, it is something I fear . Have you been offered an ablation at any stage.

Have you spoken to an Electrophysiologist, if not I think maybe you should now rather than wait any longer . This is not a comprehensive list but may help you to locate one...

heartrhythmspecialists.org/...

thanks a lot

If you can afford it, it might be worthwhile arranging a private appointment. You do get more time to ask questions and discuss your treatment options. You'd then have a better idea of how to move forward. Good luck

thanks a lot

Is that all he said in the letters? My experience of my previous cardiologist was of a very technical letter sent to my GP who couldn't or didn't want to explain the implications. I think the GP should be able to explain to you why the cardiologist has abandoned you, if not then I agree about the EP. As your severe symptoms are only four months old I hope there is a way to improve your situation.

Buffafly
Buffafly
in reply to Buffafly

I just looked at your profile and I see you already had the dilated atrium 5 years ago so you have done quite well!

thanks - it was the word "severely" that worried me - appreciate the feedback.

Did your cardiologist explain his diagnosis and treatment in his letter to your GP? What is your GP's view? If your GP is amenable you could ask him/her to refer you to another cardiology unit, but do some research first to find good ones that you can reach.

Alternatively, as Petrified says, if you can afford it then jump the queue for an initial consultation, at least, and go Private. There was an article in the Daily Mail a couple of months ago: The Good Doctors Guide pressreader.com/uk/daily-ma...

An initial consultation should be around £300 but extra for any tests, so take any test results you already have with you.

I hope this helps.

DragonLady47
DragonLady47
in reply to IanMK

Thanks I'll take a look at that later - and haven't been able to see my GP yet but the letters were simply his version of the results of the tests - nothing about any other treatment he felt would help. I asked the Nurse Practitioner to write back and say I was unhappy and what else could be done - I certainly don't want to be sitting in a chair and getting fatter and building up to a heart attack - I like to get out and about in the beautiful place I live - but it's hilly! LOL. I will take on board all your suggestions - thanks to you and everyone for your advice.

I would ring the secretary of the consultant and register your concern about the consultation. The main point to make would be that your questions about improving fitness and what could be done to improve the situation generally were not, in your view, adequately addressed. I would keep the conversation fairly low key- at this stage you are registering a concern and giving them the opportunity to respond.

The consultant should offer you a further appointment ( or you could suggest this). If this approach doesn’t work, you could speak to your GP and request a referral to another consultant. Additionally, most hospitals have service called PALS which can intervene on behalf of a patient when they are unhappy with their consultations; however, I would give the consultant the opportunity to rectify the situation in the first instance. Keep notes on all of the calls, conversations etc..

thanks - appreciated.

My left atrium was severely dilated on my echo one year ago. My EP started me on cardivilol (coreg) and amiodarone. I stopped the amio after 7 months because it wasn't controlling the afib, started flecanaide and have been af free since. I'm expecting/hoping to see improvement in my left atrium in my September echo. So, what I'm getting at, you should not be abandoned, there are medications to try that may help.

DragonLady47
DragonLady47
in reply to Amcech

Thanks - am hoping to get a more thorough letter from him shortly. He has sent nothing to me just test results to the doctor.

You may also like...