Hello all you lovely Afibbers -
I have my first face to face appointment with a cardiologist today (early afternoon) having started my lone PAF adventure a year ago.
Can any of you knowledgeable people suggest what I should be asking the cardiologist or discussing with him?
I'm going to be proposing PiP Flecainide/Bisoprolol (I already have the PiP Bisoprolol). Your suggestions will be gratefully received!
Helen
Hi Helen,.
I am no expert, so I hope others Reply. I've only had that one recent appt with a Cardiologist that was actually with an Arrythmia Specialist Nurse.
However one aspect I missed that I wish I could go back and redo happened when the Nurse started to show me where and how AF affects the heart on a 3D model she had on her desk. But I was so full of information and questions of my own that I unintentionally cut across her as she had just began to explain. And then we went off on another matter and never returned to that 3D explanation. So I'm still in ignorance of being able to visualise the sequence and location of electrical signals during AF, and still wishing I had been able to listen at that moment.
Disappointingly I had my 10th AF event yesterday, lasting a longer than usual 11 hours. And I'm still waiting for my Cardiology Report and the Flecainide + beta blocker I was told I would be prescribed as PIPs. Would have been useful yesterday, but it's stuck in an NHS waiting list somewhere. Bummer.
Good luck today.
Bob
Thanks, Bob - that's a useful suggestion! I will certainly pay good attention if the cardiologist or someone else goes to the trouble to explain the processes to me. He's shown very little interest in explaining anything to me on the two phone calls I've had with him but I'm hoping today in person might be different.
And sorry to hear about your AF episide yesterday, I know how discouraging it is when we have another episide. I still lapse into blind hope that it's not going to happen again every time my most recent episide is a few weeks gone. I hope you get your prescriptions very soon!
Thanks again. Helen
One of my questions would be,what is the prognosis for the future?If you have had an echo you will need a breakdown of this procedure. If you have not had an echo do you think you are due one?If not why not? I get one once a year which i believe is fairly usual. Some get them more often .Then what do you expect from your medication?How is it going to help you?
Thank you, gingercats, those are all good questions. I did have an echo & 24 hr ECG done about a week after my first episode of AFib quite coincidentally so I'll be interested to hear what he has to say about that.
Make sure he is aware of your thyroid situation, take details of your latest thyroid function tests. If you have a preferred treatment plan in mind, make sure you tell him but keep an open mind and don’t be afraid to take notes of anything he says. Normally it’s better to have someone with you but these days it’s not always possible. It’s very easy to be so focused on things you want to ask that don’t always take in all the answers. I also suggest you ask him if it would be OK to email him, or his secretary should you have any questions after the meeting. It would be very rude if he said no 😉 so make a note of the contact details.
Hope all goes well and please let us know how you get on…….
As BobD would say, don’t go for the over glam look and don’t underplay how AF makes you feel. Tell it as it is otherwise he may not feel you need the treatment you feel you need.
You said: "don’t go for the over glam look" 🤣🤣🤣 How did you guess I'm wearing a dress rather than the usual shorts & T shirt for the first time in months?!
This is all stellar advice, FlapJack, thank you! It's all gone on my list. After I overreacted to something on here yesterday and had a bit of a melt down I realised that it was about my anxiety over this appointment today. I am desperate for a good 'side kick' to take with me but sadly have no-one suitable to hand. Both daughters are in the US and my BFF (who is a nurse) is away. I'm going to surrepticiously record the conversation on my iPhone so at least I can go over what's discussed later. But sssshh, don't tell!
Thanks again. Helen
Hi Helen,
I have been lucky to see a cardiologist twice since last year ( I’m also Lone PAF) and in my first face to face session, the hospital operated what they call a ‘one stop shop’ where they first did an echo of my heart and the results went straight through to the cardio who then discussed them with me. I have flec as a PIP but I’ve only had to take it once last year and I’m glad of that, as it’s a hefty dose as a PIP.
As you are lone PAF too, did they base that on an echo that you had so they have already seen the structure if your heart?
If you haven’t had an echo, ask for one. They can’t prescribe you flec without it as they need to see the structure of your heart.
If you do end up with the flecainide prescription, make sure you get a prescription from the cardiologist to take away with you and that he/she writes to your GP about it as your GP won’t be able to prescribe you any afterwards, as it’s not one of their ‘general’ drugs.
Ask the cardiologist to explain exactly how you are to take the PIP based on varying times of the day as well. I.e i take daily Bisop, but presume you don’t? Ask if you need to wait for any length of time between the flec and the bisoprolol? I also have to check my BP and the amount of bisop varies based on that…My PIP regime involves three doses of varying times and I asked the cardiologist to write it all down, as I knew I’d get it mixed up, especially if 1 am in the morning 😳
Also make sure when you leave the appointment that you will be seen again for a follow up! Also ask if you can have details of how to contact an arrhythmia nurse should you need advice on the meantime.
Hope this helps,
Teresa
Hi Teresa - that's all really useful advice & has gone on my list, thank you! Tbh, the Lone PAF is self diagnosis but I did have an echo and 24 hr ECG, quite coincidentally, about a week after my first AFib episode, for something entirely different. It confirmed that my heart is structurally sound and nothing unusual showed up on the 24 hr ECG. My BP & HR are low normal. Because of my low HR (resting, low 50s, mid to low 40s at night) I don't take Bisoprolol daily but1.25mg as PiP and even that will put my HR in the 30s if I've taken it later in the day.
Thanks again for the excellent advice, Helen
Check your Chads score regarding anticoagulation.
Ask about an echocardiogram to check your heart structure, especially if you are offered Flecanide as PIP.
Write down answers!
Thanks, Wilson - I'd already left so I didn't see this, but my CHADS2 score is +2, courtesy of being female & 65+, and I had an echo done a year ago.Thank you again for responding
Helen
Ah,Sounds like you’re all set then & they will be able to decide based on that if you could add fleconaide as a PIP. I’m like you with low/normal BP, so I’m also not ideal for daily bisoprolol- but I am taking 1.25 daily. My BP is always low, but not enough for them to be worried, but it seems to be stopping the afib 🤞
I only mentioned BP, because when I first got diagnosed with afib ( the only way was to ‘catch it’ - so I went to A&E to get an ECG) they wouldn’t give me bisoprolol for hours, until my BP was higher as it was too low. My cardio said to check my BP if and when I’m in Afib as it can affect bisop doseage, as you may need to still take both the bisop and flec together, but we are all different.
My ‘normal ’ resting HR wasn’t as low as yours though , it was mid 60s & possibly low 50s sleeping and it’s now mid to low 50s at rest and possibly low 40s sleeping ( I don’t look at night stats as I know it will worry me more!)
Good luck,
Teresa
Well, that was much ado about nothing. The cardiologist was pleasant but didn't show any interest in either educating me or discussing anything with me. I was with him for 8 minutes exactly! The upshot was:
- he prescribed Flucainide as PiP, which was handy because that was exactly what I was going to ask him for. He gave me 200 gms of Flucainide to take immediately I go into AFib but didn't say anything about what to do if that doesn't work
- he said my heart looks good and the ECG showed no problems although 'a little low at times' (presumably he was talking about my low HR)
- he said he didn't think I was a candidate for ablation as my episodes are too infrequent and I'm not very symptomatic (no light headedness or chest pain), which was handy as I don't want an ablation at this stage
- he said 'no' to my request to be referred to an EP, as they 'only do ablations'
- he asked whether I was taking anticoagulants, I said no, he said you have a 1.9% chance of having a stroke but it's up to you. End of conversation. He didn't seem that interested
- I asked about Bisoprolol with the Flucainide but he said 'no, not for AFib' (I'm confused now)
- he said (clearly bringing the meeting to a close) he'd see me in a year. A year! I said I wasn't happy with that and that I felt I'd been left with this horrible condition for a year already with no sense of being cared for so he said okay, I'll phone you in 6 months.
I was so flummoxed at the brevity of this conversation that I was out the door before I realised I hadn't asked him about an arrythmia nurse or contacting him if I needed to (though I have emailed his secretary in the past so I know that it's possible). I had my list in hand, I promise, but it just didn't pan out like I expected! I'll call the clinic tomorrow to ask about an arrythmia nurse.
This is the Royal United Hospital, Bath, in case any of you are wondering how to get yourself some of this stellar, top notch cardiology. I drove a total of 3 hours for that 8 minutes of cardiology know how.
Every single thing I know about AFib and treatment options I have learned on this forum and website. Bless you all! Thank goodness for you! ! None of my GPs or this cardiologist have told me anything about it.
Thank you so much ozziebob Hidden 10gingercats Teresa156 for your great questions.
Helen
Count yourself lucky you even got an appt and a follow up ! and the response you got is pretty typical, they aren’t interested !I have several cardiac problems and have been seeing my Consultant for a few years yet after my last appt and change of meds he said no follow up and discharged from the clinic 😳 it’s all a joke except it’s not funny 🤦🏻♀️
I’m at Yeovil Hospital, or was !
PS should have added that being a woman is a distinct disadvantage as the men get far better treatment !
You have do the ‘Iron Lady’ attitude, ‘I’m the client and I’m employing you’ 😂 That’s how men get the better treatment, a sense of their own importance 🤨
I’m currently doing the “Iron Lady” bit with a Vascular Consultant, thought I was winning with his secretary getting on the case but alas the promised prompt response from doc didn’t happen, another one with a terrible attitude to his patients 🤦🏻♀️
I hear that! It was doing the Iron Lady routine that actually got me the face to face having had nothing but a phone call since onset of AFib a year ago. I should have saved myself the bother - absolutely nothing happened in that meeting that couldn't have happened in a 5 minute phone call call.
It pains me to say this but your appointment went more or less how I expected it would. We get very worked up about the appointment but to the consultant it’s routine: inform heart structure ok, treatment plan, other treatment considered not necessary, anticoagulant option given, job done. Actually, he could have done it quicker 🤔 There are some who ‘do human’ but not many.
I have had similar experiences so now I make private appointments and tread the fine line of robustly questioning their advice whilst not losing their goodwill. I also take a written list of Q's with me and importantly apologise when I take it out. However, this does not work every time when they are running late!
The cost was around £250 for my last annual cardiologist check-up and in terms of reduced anxiety works for me.
I'm going to hold off for a while and see how/if my AFib responds to my various lifestyle changes but when the time is right I think I'll be following your example.
Incidentally, I just received all the results of a bunch of blood tests I had done in early June (annual GP mandated heart related checks). My triglyerides were up so clearly I'll have to add statins to the ever growing list of medications I'm not taking, thank you! But interestestingly my platelet count was below the acceptible range. So, if I was taking an anticoagulant it would be on top of an apparently already sub par clotting capability. Of course, that apparently isn't something that anyone would check on. It doesn't fill me with confidence....
Good plan re more lifestyle changes & no statins.
I have often wondered why in taking an AC decision the medics don't seem to consider the platelet count or INR. My tests last year were 197 for count (range 150-410), 8.2 for size (range 7.5-11.2) and INR 1. Not sure what all this means overall but I don't take ACs.
My platelets were 145 for the same range that you quoted. I went to my friend Google to see what might cause that but 'leukemia' was the only answer so I think I'll shelve that one for now 😅. With any luck it would at least mean that I don't have to be so concerned about blood clots!
My advice is this. Cardiologists could be seen as the plumbers,EPs as the electricians and GPs as general caretakers.EPs certainly do not just do ablations!
I find my cardiologist to be basically indifferent to AF .( I am still on list as have weird aortic valve which is monitored)
My next step would he be to ask my GP fir a referral to an EP on the NHS.
If refused,and if you can run to it,book a private consultation with an EP yourself. I self referred ,saw EP within a week and had half an hour with him. He then transferred me to his NHS list,where I have been ever since.
He took great care of me for years, regular Echocardiogram s and on meds for AFib and flutter,until eventually they were less effective and I was then put on list for ablation. ( Recently and appears to be a complete success)
It's unsettling to feel you have been dismissed and patronised as well as blxxdy annoying!
Just thought I'd let you know what worked for me.
Good luck x
Thanks very much for your words of encouragement. I am intending to look for a private EP, but I'll have to save up my pennies for a while. It does seem like the way forward at this point.
I did jump up and down a bit with 'my' GP (as in, whatever GP I was allocated a phone call with that day) and told her I wasn't happy with the cardiologist I was under and would like to see someone else. She wrote to the cardiology dept., and I received a letter saying I should call to make an appointment, which I did, and was told that the waiting list was 45 weeks! So it seemed like she'd just referred me again, instead of actually saying that I wanted a second opinion. It's hopeless really. It feels like a merry go round of rotating faces that know zero about you, have no time to find out, but out pops yet another prescription.
At least my AFib is really not bad at this stage (ssshhh, did I really say that out loud 😅) so I have some time to figure it out.
Thanks again, it does really help to have fellow AFibbers on side x
Just keep head banging gal! Try and do all you can for yourself too, nutrition etc. CDreamer is my resident go-to person on here has excellent knowledge.It's very wearing especially at the present time with the NHS state of affairs.
But here you are not alone! Xx
Definitely! I'm all about the lifestyle changes at the mo. More Lifestyle, Less Drugs is my motto!
It's really good to be on here and feel so supported and be learning so much.
❤️
My only appointment with cardiologist was pretty rubbish too. After 9 months of coping alone, no lifestyle or dietary advice, no information whatsoever and an incorrect diagnosis, well actually 3, at the beginning I had high hopes for this appointment.Watch this space for next time.
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