Telephone Consultation : Hi everyone, My AF... - AF Association

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Telephone Consultation

Lesleyray
Lesleyray

Hi everyone, My AF has been getting much more frequent in the last few months, I’m on maximum dosage of my medication, two weeks trying to get a callback from my surgery for a referral, 4 months for a hospital appointment, letter came yesterday saying I would be having a telephone consultation 27th Nov. I cannot understand how I’m going to have an assessment over the phone to garner if my heart is ok without an ecg etc, my biggest fear that if I then have to have a face to face appointment I will have to wait another 4 months , last year it was agree to trial medication and if not successful an ablation would be in order, I see this as being a long journey before coming to a conclusion. The hospital where I go is not the main hospital where covid patients are treated. My other fear is the conversation not being on a personal scale where I can voice my concerns, getting quite stressful over this does not help the old heart

48 Replies
oldestnewest

Oh poor you. I started my journey having to wait 5 months. I chose to have a private appt. It was really worth it. I had an echogram, ecg and prescribed medication with a follow ups every 6 months. If you can’t run to this then go to your A & E if you go into AF and maybe you will get attention. The initial wait for an NHS appt is awful and stressful when you least need it. Sorry I cant be more helpful but I can relate to your situation.

Lesleyray
Lesleyray in reply to Fibber222

Hi, thank you for your reply, will do so is it gets to bad

Kind regards

Lesley

Hi, my thinking (hoping really) would be that if you were promised an ablation if your latest medication failed then that will be confirmed as the next step. I am in a similar boat, but a trip to A&E provided an ECG ☺️. I don’t want an ablation at this point but I do want to discuss possibilities so I have made a list of concerns and essential questions ready for a telephone consultation. I had one with my EP before my ablation in 2015 because we live a long way from Harefield where I chose to have the procedure and I have to say I didn’t get much of a word in because he had decided I needed an ablation ASAP and assumed I’d be delighted!

I think I posted an article with advice on ‘How to get the best out of your GP appointment’ or similar some time ago, but a search will probably come up with same principles. As you don’t have long you need to be very focussed if you get a chance to ask questions!

Best wishes 💜

Lesleyray
Lesleyray in reply to Buffafly

Hi, thank you for your reply, lovely to have so many responses from folk who understand

Kind regards

Lesley

I am in a similar position for a non Afib consultation and do not want to do an video consultation.I may also have to go private as my usually helpful GP is sidelining me with this particular problem and it needs a more in depth investigation than the GP is able to offer. He acting a bit clueless.

Hi, thank you for replying, lots of lovely advise on here.

Kind regards

Lesley

From what I am hearing, in some areas ablations are only being offered to patients who have more severe conditions. Therefore, anything the patient does or says should reflect the genuine seriousness of their condition particularly if they believe they require urgent treatment. Delaying a telephone appointment to get a face to face one could be seen as the situation not being that urgent. Only you will know the urgency of your situation but I’m sure you will understand the point I’m making.....

Lesleyray
Lesleyray in reply to FlapJack

I was going to have an ablation but as I was on beta blockers the consultant says wrong treatment, hence the medication I’m on now but sadly not working as they should now, will wait to see what the outcome is of the call

Kind regards

Lesley

I too had a telephone call appointment about a month ago (rather than the usual face to face meeting) with my cardio.

All I will add is this Lesley. Make sure you write down a list of all the questions you want to ask and have it front of you. List your concerns too. It's so easy to forget the important things you want to ask about by memory alone. I always do a list now numbered 1, 2, 3 and so on and work through it one by one.

Before I did this I always forgot to ask something important.

Good luck with it.

Paul

Lesleyray
Lesleyray in reply to Paulbounce

Hi Paul, thank you for your reply, I will list all my concerns as you suggest as it can be hard to remember all that is happening unless prompted by the doctor.

Kind regards

Lesley

I'm at the beginning of this AF journey, and last week I had a phone consult with an EP. We spent about twenty minutes talking through my symptoms and options, but when I asked if he could address a couple of questions I'd pre-prepared (the re-assurance kind), he refused, brusquely informing me my time was up, I'd had a longer appointment than other patients.

I'm convinced if it'd been a face-to-face encounter my questions wouldn't have been dismissed in such an abrupt and impatient manner.

Hi Lesley - I think you need to take one step at a time as I really don’t think it will affect the outcome whether or not your appointment is telephone or face to face. In these time I much prefer telephone. Buffafly has made some very useful comments - be clear as to what you want to convey - write it down. The clearer you can articulate the questions, the more precise your doctor will be able to assess you. Keep to the subject and don’t wander.

Give specifics - how often do you have episodes, how long do they last, how do you feel during the episodes. These are now my concerns.............What I would like to happen now is........

These are very unusual times we are living through and we must all do the best we can with what we have. Waiting times may longer in areas where COVID infections are high and hospitals are under pressure but not nearly as long where departments are able to continue to function. Our local cardiology is operating from a private hospital which has been seconded by the NHS to ensure waiting lists do not increase - this means that everything is now done through the NHS and private appointments are not available for the foreseeable. I find that reassuring.

Your GP should be able to arrange an ECG prior to your appointment day/time and forward to your Cardiologist/GP. The alternative may be to invest in a Kardia and take your own - that would also enable you to keep a log of the AF episodes to show frequency. I know I and my doctors found this very useful as I was able to email the trace directly to my EP.

Fear of the unknown can cause panicky feeling and uncertainty will increase your sense of panic so I would suggest that you ask your EP for reassurance of what your treatment plan will be going forward and the sort of time frame you may expect.

Best wishes and hope it goes well for you.

Lesleyray
Lesleyray in reply to CDreamer

Hi, Thank you for your reply, I will certainly lists all my concerns, I couldn’t go the surgery as it was all done by telephone (they normally do a ecg when I have a full episode but said the ecg could be done at the hospital, I will ring them to request one) I have been hospitalised twice with AF, one on blue lights (my first episode before I was diagnosed) I have episodes everyday, some longer then others so it’s getting quite scary that this is not the norm for me. So, will sit it out and investigate getting a Kardia? Are they any recommendations to a good one? If you could or others let me know will be much appreciated.

Take care and stay safe

Lesley

Buffafly
Buffafly in reply to Lesleyray

There are two Kardia models, the single lead and the six lead. The single is sufficient to record AF episodes and can actually provide much more info to a cardiologist. I bought my new one direct store.alivecor.co.uk/?ds_rl...

Cost is £99 and you can’t get it for less I hear!

Buffafly
Buffafly in reply to Buffafly

PS You must check compatibility with your smartphone.

Lesleyray
Lesleyray in reply to Buffafly

Hi will do, thank you

Now that you have a letter confirming the appointment, why not ring them about having an ECG before the appointment.

Lesleyray
Lesleyray in reply to FlapJack

Hi, thank you for your reply, I will ring on Monday for one

Kind regards

Lesley

My GP ran an ECG for me and a blood test before my telephone follow-up appointment with the cardiologist. The actual cardiologist didn't have them with him when he rang me, but that was his fault. I had checked with his secretary to make sure they were there. So do ask your GP for help with this.

Hi, will do, thanks

Kind regards

Lesley

What an absolute gentleman! Every best wish for getting the right treatment for you.......

Lesleyray
Lesleyray in reply to FlapJack

Hi, thank you but I’m actually female lol 😀😀used Ray at the end as it’s my hubbies name and use it quite a lot when more then six letters is required

Kind regards

Lesley

FlapJack
FlapJack in reply to Lesleyray

Huh! 😉😂😉

Kardia is advertised on some TV stations but is probably best Googled. There are two types, single and 6 lead which is more sophisticated but some say less easy to use. I don’t know as I have a single lead. Very useful aid as it enables you to check immediately any strange sensations with your heart which is good as long as using it doesn’t become obsessive. Also worth typing Kardia into the search box top right of this page.

Lesleyray
Lesleyray in reply to FlapJack

Thank you

I had a telephone conversation with my specialist on the 19th Oct. she is a lovely lady always happy after seeing her. Well anyway du to having my AF change a bit a myself going on holiday she told me to up my flecanide. Well ended up in a& E on the Saturday night with the headache from hell they think it was the medication had the works done plus a head scan. Went on holiday carried on with the increased meds but changed it to having extra half twice a day. Couldn’t walk all week due to being out of breath awful. Now I have got a heart monitor on for two weeks. Albeit takes a while to see someone but not as long as you. You need to call them and really tell them how you feel I don’t like to bother them but we feel awful and sometimes we need answers. The over the phone was good I writ everything down and found it quite personal. X good luck.

Hi, thank you and good luck to you as well

I understand your feelings, I was diagnosed AF by GP last November, I had my first telephone consult in May, EchoCardiogram and 72 hour ECG in August and now my November Consult has been changed to telephone. I've never seen the Cardiologist and can't really understand why it's OK to attend for tests, yet not to see the main man. I have my list of questions ready. Fortunately I'm in permanent AF which is asymptomatic so apart from getting breathless it doesn't affect me too much. Good luck

Lesleyray
Lesleyray in reply to District

Hi, thank you and good luck to you to

cuore
cuore in reply to District

I believe you mean persistent, and if so, are you then, 11 months persistent, from initial diagnosis? Time is not on your side. Talk to the manager of the cardiology department that you must see the "main man" because your heart is being remodeled.

I was in the exact same boat as you. Luckily for me though the cardio nurse gave me his number on one of my first consultations a couple of years ago. I was taking flecanide and beta blocker but basically kept on having AF everyday, i phoned the cardio and he said the time has come for an ablation and said i was on the list for one but it could take from 3 mth to a year. He said it was up to me if i wanted to continue with the medication. I sent him an ECG from my cardio mobile and he got back to me a few days later and said thanks it was helpful and said it would be a cryoablation i would be having. I think you should relax if you possibly can because i think your going to be put on the list for an ablation too. My cardio said AF is not going to kill me and to keep my mind off thinking about it to often. Tell the person on the telephone you have no quality of life and you have run out of options. Good luck and try not to worry 😊

tunybgur
tunybgur in reply to stoneyrosed

Hi stoney,

Yes AF may not kill you immediately, but the simple fact is your quality of life is diminished and it WILL shorten your life expectancy, perhaps by 10 years....that's a fact!

Easternmost
Easternmost in reply to tunybgur

Is that if the condition is left untreated or even if you have an ablation please?

tunybgur
tunybgur in reply to Easternmost

The only data I have seen assumes the condition is permanent, I would think if you were returned to sinus rhythm it wouldn't affect your longevity....I hope not anyway.

The two problems associated with AF are stroke and heart failure. Anti coagulants should help prevent strokes, and I assume there are other meds to help avoid heart failure, but this assumes AF has been diagnosed and is being actively treated including regular follow ups....it's the follow up checks which are often missing.

Easternmost
Easternmost in reply to tunybgur

Thank you for your reply and clarification. I am on anti-coagulants and all being well have the ablation next Monday. Wishing you all the best.

Hi, thank you and good luck to you to

Hi Lesleyray,

You're quite right to be concerned, the fact is AF begets AF, the longer AF goes on without treatment the more intractable it becomes.

When I was first diagnosed with AF it was 7 months before my first cardioversion which got me straight back into sinus rhythm, sadly for only a few months.

I now think this was totally unacceptable as these months in permanent AF obviously made this condition more entrenched and could have caused structural changes in my heart.

This is the problem with chronic conditions in the NHS, if you're not actually dying then you are made to wait....if I knew then what I know now I would have made a lot more fuss, and possibly had it done earlier.

Good luck, and keep on their backs!

Lesleyray
Lesleyray in reply to tunybgur

Hi, I will, ringing the consultants secretary tomorrow, thanks and good luck

cuore
cuore in reply to tunybgur

Were you paroxysmal or persistent when first diagnosed? It's really the time spent persistent that does the remodelling. I was six months persistent for my first ablation , and had I not had it at that time, I would never have been able to return to sinus. I had to have a total of three ablations to be in sinus for a year and five months. Did you eventually have an ablation?

tunybgur
tunybgur in reply to cuore

Hi cuore,

I was in persistent AF, but they had to do all the Holter monitor tests, adjust warfarin levels etc etc before they accepted my assurance that it was a permanent condition.

I was monitoring my pulse with a HealForce PC80B which I had bought for this purpose (I like to be as pro-active as possible) and it was showing the absence of a 'P' wave permanently. The 'P' wave is an indicator of AF, apart from the fast irregular pulse and lack of energy, so I was quite certain it was persistent but the medics have to do the due diligence....

They first tried stopping my Bisoprolol and substituting Sotalol but this acted on me like a medical cosh, and did nothing to stop the AF!

Eventually after seven months they scheduled me for cardioversion which immediately put me back into SR, but it only lasted a few months.

I haven't had an ablation, but Flecainide was suggested by the specialist AF nurse and that has kept me in SR for the last 3 years (bless her), but the dosage to keep me in SR is slowly increasing.....why did it take a nurse to sort me out???

The point I am making is, it was obvious I was in persistent AF after a few months, so why wasn't cardioversion the first option as it is so successful in returning AF sufferers into SR? When mine was done I was one of a batch of about a dozen people, and all except one guy were immediately returned to SR.

It is a really quick, easy and safe procedure and could prevent AF becoming entrenched and structural changes happening to the heart.

Good luck

Same situation here ! It is taking weeks to get blood work results and like wise with echocardiogram ECG results. My hospital has 500 people waiting outside for COVID testing and the ER is full of covid patients. Add to this, things will get worse I'm told.

cuore
cuore in reply to Mrhermyl

I remember you live in Toronto which means you would likely have your blood work and ECG at Lifelabs. If so, you can access the results online in a day or two. That's the one thing we don't have to wait for here in Canada. If you go to the hospital to get the done, that's a different matter.

Mrhermyl
Mrhermyl in reply to cuore

Good Morning,

No, I go to Dynacare and unless the doctor puts OK on the requisition you get no results.

I tried to get my own account but they gave me a hard time. Idon't have the energy to fight them.

Hi, scary times, good luck

Lesley

I was given a telephone appointment in September but a week before they called and asked me to come to the hospital for it instead. The doctors apparently look through patient files nearer to appointments and decide who needs to be seen face to face. Hopefully this will happen for you too. Good luck

Hi, thank you for that info hopefully I will get the same

Kind regards

Lesley

Hi Lesley. You have had plenty of good advice. You are on medication already for AF but is this from your GP? Or the consultant you need to see?

I was referred by my GP but had to wait 3 months to see my consultant for the first time. My AF had just become persistent and the combination of AF and panic was making me a nervous wreck. I could hardly bring myself to go out.

But then a couple of things happened which helped and might help you.

Firstly I went to see a nice cardiologist privately who calmed me down by saying his old aunt had lived to 90 having been in AF for 30 years. He also explained that I needed to have a cardioversion and before it could be arranged I needed to be on anticoagulants for a month, so arranged they be prescribed by my GP. If I hadn't done that it would have meant another month's wait for the cardioversion after I'd seen my NHS consultant.

Secondly, with 2 months still to wait, my AF was so bad and fast and fierce I went to A&E. That was a good thing because they referred me to the Nurse Led Arrhthmmia clinic the following week. The Arrhythmia Nurse was brilliant and arranged various tests - an echo cardiogram etc and a stress test (which the Consultant would have arranged but 2 months later)vit meant I was cleared to take Flecainide. She was and still is an invaluable continuing source of support.

All in all these 2 things saved precious months, because the longer you are in AF the more your heart remodels and the harder it us to fix. I went on to have two ablations and they have helped a lot.

What would happen in Covid times I can't say. But in life the squeaky wheel gets the most oil, so squeak as loudly as you can. ❤💓

Hi, thank you for the lovely reply, my AF (4 years) has only been dealt with by the cardiologist who put me on flecainide and rivaroxaban , I had a heart scan last year where I was also diagnosed with a leaky heart valve but it wasn’t severe enough to overly worry. The problem with our cardiology dept and doctors is there is no monitoring. They only get involve when the AF starts playing up and because I’m on the max flecainide the doctor couldn’t up the dose hence the referral, I’m hoping for an ablation this time round so fingers cross will soon get sorted.

Kind regards

Lesley

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