Advice on qestions to ask Consultant

[Nosila07]

Hi - a quick potted history: Aged 65 F First diagnosed with Persistent AF in summer of 2020 (probably had it long before without knowing).

1st planned CV January 2021 - successful stayed in NSR until 1st April 2021 -felt very poorly ended up in Resusc in A&E and after Flecainide drip and Digoxin drip failed I was given another CV - successful. They said I needed to see Consultant at hospital .

Stayed in NSR until started feeling breathless & generally unwell April/May 2022. Was in full blown AF and advised to go to A&E who told me to "live with it". All this time waiting for Consultant appt. Put on Digoxin 125mg (already taking 60m Edoxoban and BP meds together with my Thyroxine).

Eventually after 68 weeks appointment on 5th Sept. 2022. Face to face and got a full 5 minutes! Told no more CVs (no explanation) and would say no more until he saw an new Echocardiogram and results of wearing a HR monitor for 7 days Had to wait until Dec for the Echocardiogram and January this year for the HR monitor. He said I would likely need an ablation.

Last week received letter for telephone follow up. I said I wanted a face to face which I now have next week.

So I am in persistent AF and have been now for almost a year. My symptoms currently are fatigue, breathlessness when climbing stairs, hills, doing the garden, bending. I can do short stints at most things but then need to rest.

I am trying to put together a list of the things I want to ask him and was hoping you lovely knowledgeable people would help me on this. All I know right now is I want to be back in NSR as sadly I think we get used to feeling "rubbish" and I don't want to be like this. I retired a year ago and want to travel and do more than I feel able to do right now. Any suggestions/advice would be greatly appreciated. Thank you.

[mav7]

Hopefully,  BobD or others will see this post and provide the link to the wealth of information on the HealthUnlocked site which gives info on afib, ablations, and other pertinent facts. (sorry I don't have links)

My only advice would to be review your medications with the doctor and insure it is the best course of action. Explore alternatives, if any.

[mjames1]

Anyone who tells you "live with it" is a person you can live without. Two options would be a trial on daily anti-arrythmics. If that didn't work or wasn't tolerated, then ablation. Because you're in long term persistent, you might consider either a mini maze or hybrid procedure. Do not be surprised if your consultant shakes their head, because they are not available everywhere and doctors tend to know and recommend mostly what their hospital does. One of our members, MummyLuv has had a mini maze and can supply more information. You sometimes hear afib will not kill you and it's all about lifestyle and while literally true, afib has the potential over time to weaken your heart leading to a very diminished lifestyle that might be avoided if treated more aggressively.

Jim

[MummyLuv in reply to mjames1]

thanks Jim, hello Nosila, I opted for mini maze (surgical ablation) rather than catheter ablation because for persistent afib it has a near double success rate. It is more invasive but done by keyhole. Also has the added benefit of being able to clip the left appendage and significantly reduce stroke risk. If you have private healthcare you can access the same surgeon as me Mr Steven Hunter in London, if not then it’s more of a postcode lottery, there are a very small number of cardiothorasic surgeons doing this in the Uk, Mr Hunter does the most and is based in the NHS out of Sheffield general. I blogged my journey so if you want to know more pls read my posts and feel free to PM me. Alison

[4chickens]

Gosh I’m 63 and your story is so like mine, although I’m in permanent flutter, listen to your consultant and their suggestions but keep in mind that the they will generally offer what they know or can provide, so an EP will offer catheter ablation of one form or another. There is lots of treatments becoming available like pulse field ablation, mini maze etc but it’s a bit of a post code lottery unless you have private health insurance. Good luck with your appointment and let us know what you decide.

[Vrouse]

I've been in persistent AF for 2 years and feel better than when it was paroximal. I travel frequently, do pilates twice a week and basically get on with my life. My biggest issue was getting my head round it and accepting it, once I did that all the anxiety stopped and I was able to function again. It didn't change overnight but I decided I could let AF dictate my life or just get on with living. I wish you well

[Heartening in reply to Vrouse]

This is inspiring- Vroyse - I went into persistent AF last Sept & have been unable to tolerate the beta blockers so now been taken off them - I felt far worse when taking them. Now waiting for a 2nd CV & just taking Amionodrone until after this procedure to see if it helps to keep me in NSR for longer. It’s good to know you have a normal happy lifestyle whilst in AF. I do feel tired & hate the fact I can feel my heart hammering away so trying to feel less anxious. Your words have encouraged me.

[Moongold7]

My humble suggestion: tell the new Consultant EVERYTHING and let him know just how it's affecting you. Until you do you won't be able to rest without anxiety. It sounds like you've had a bad lot, especially anyone 'medical' telling you to 'live with it'! I don't take this sort of crap anymore from doctors - if you're paying their bill you're entitled to be given the best information available. Giving patients 15 minutes or whatever in which to try to advise everything, is totally counter-productive also. What happened to the 1-hour guaranteed consult with any specialist! At least, that's what it always was in Australia, where I am. Now you can pay up to $500 for a 15 minute appointment! Imo that's profiteering at the risk of the health of patients, and it certainly is far from good enough. Also can't believe how long you had to wait for appropriate medical attention: my AF was discovered in October 2021, I was admitted to Emergency with the typical high heart rates etc. The hospital kept me in overnight, arranged an appointment for me with a Cardiologist, I saw him in a matter of a few weeks and was immediately placed on Bisoprolol and Apixaban, which I hate taking, but have to accept. I paid out for two Private Cardios for 'better advice' and then went back to the Public system as I was being badly treated, insulted and I felt extremely uncared for and neglected. A 2nd opinion or 3rd can be very helpful but I hope you can find someone who is recommended for their care rather than just be pushed onto anyone who is available.