I've had AF for 7 years now and have finally agreed to have an ablation as it is no longer controlled with drugs and is now controlling my life. I have had to make numerous visits to A & E where I get different reactions from doctors at the hospital, the latest negative one only last night, where the doctors first words to me were ' what do you want me to do', to which I replied, get my heart back into rhythm, he then said ' people have this arrhythmia all the time and have to learn to live with it'. Not helpful when you've had just spent 2 days in hospital with it, been on a Amiodarone drip to get your heart back into rhythm, gone home and your heart goes back out of rhythm within hours and the cardiologist who came to see me said that if my heart was out of rhythm for more than 2 hours I needed to come back!! I ended up comimg home, still in AF As I was so angry and upset.
Doctors attitudes.: I've had AF for... - Atrial Fibrillati...
Doctors attitudes.
Hi Nannadee, isn't that sort of attitude so unhelpful! AF affects us in such different ways and while some live with it with relative ease, you can't generalise in that unkind and unsympathetic way. And it's hard to get it right at A & E when you get 'I don't know why you've come in' at one visit and 'You should have come in sooner' at another.
I hope you are not still suffering.
It sounds as if you've not been at all keen on an ablation. It does sometimes get talked about by doctors as if it were much the same as having a leg amputated, and a last resort only, but most first timers find it much less of a hurdle than expected.
I hope you won't have too long to wait. A private appointment with an EP can save a lot of time and as your life has become so dominated by AF, that's perhaps something to consider.
Hi Rellim, thanks for replying. I have an appointment on 11th June at Leeds General to see the cardiologist who will be performing the ablation. I haven't been keen to have it done but can't live my life with this AF any longer. I no longer dare go abroad on holiday as I feel so ill when it's out of rhythm. I've never heard of an EP before???
An EP (electrophysiologist) is a doctor who specialises in heart rhythms. Cardiologists deal with the heart's anatomy - more like a plumber in contrast to an electrician. You can google your cardiologist and find out what his speciality is. I was referred first to a cardiologist who then referred me to my EP. A private appointment with the latter would have reduced the time before I had an ablation by at least 3 months, so if you are taking the same route it could speed things up. I haven't noticed anyone on the forum saying that their private appointment was a waste of money. Virtually everyone has said it was money well spent.
I know exactly what you mean about not daring to go abroad and it is a treat for me now to feel able to travel again. Two years ago I would not have been brave enough to go on the holiday I had a few weeks ago.
Ablation usually seems a bigger step in anticipation than it turns out to be. Read the experiences on this forum and don't be too worried about the risks as although some dire things are possible, they are very rare. If something does threaten to go pear shaped you have about 6 skilled people looking after you with the most amazing equipment at their disposal. Nearly always nothing goes wrong and the success rate is very high.
Glad you're considering ablation. Your pattern sounds exactly like mine and ablation was the grateful solution. Nothing else worked and it has worked spectacularly so far. Of course, I'm 68 so don't have as long to look forward to reversals, but am so glad I skipped all the alternative experiments with drug adjustments. If any consolation, it seems to be most successful if you have persistent vs. occasional afib.
Are you well sedated when having an ablation as I am such a wriggler and can't keep still for 2 mins.
I was well sedated most of the time. However in the times when I was awake I had no inclination to move and even asked the nurses to scratch my face a few times!! I would have liked to have been awake more to have seen what was happening by looking at the monitors. Quite happy and relaxed about having the second one later on this year.
Has the first one not worked?
Did you actually fall asleep whilst it was being done?
Sorry about all these questions.
Just one more if you don't mind- how soon after can you drive?
.....I was told before being put on the waiting list that in my case the consultant felt there was no chance it would work the first time and that it would be two or possibly three attempts. I was in persistent AF, had been formally diagnosed last September and realistically had AF for some considerable time but gone downhill gradually and put down symptoms to other things (wrong I know!!!).
.....Yes I was a asleep a lot of the time (I wish I was awake for more to have watched it!!!). I normally don't keep still but when I was awake the mind obviously kicked in over reflexes and I was as still as a statue. A number of times when I had an itch on my face or wanted more lip salve on (TIP) I just asked one of the nurses and they did it for me.
.....Don't worry about asking questions - I don't mind at all and as it helps you great!!!
.....My EP consultant told not to drive for a minimum of one week but if my groin hadn't healed up by then not to drive until it had healed - but it had done by time the week).
Thank you for patiently answering my questions. It must have been hard living with persistent AF.
When mine was out of rhythm for 35 hours last week and they put me on the Amiodorone drip, I really thought that was it, mine was now in persistent AF and I didn't know how I could live with feeling so unwell.
I hope that your next ablation will be your last and it works for you.
Sorry you are feeling so bad but I'm probably not going to give you the answer that you want but that doctor was right in what he said. Maybe he could have been more sympathetic but few people who don't have AF understand. The fact is that AF affects us all in different ways added to which we all have different levels of acceptance and tolerance. Many people have persistent or permanent AF and live normal lives. Some would say they are the lucky ones since they are usually asymptomatic and largely unaware of their AF. Those with paroxysmal AF either manage to survive their events by various strategies (relaxation techniques, exercise etc) and manage their lives accordingly avoiding those things they know to be triggers, or are rendered incapable and have to seek outside assistance. That this help is seldom available only makes their (your) life more difficult. In truth few hospitals are able to do much at all at such short notice and one does wonder at the cardiologist glibly telling you what he did when he must surely know that local policy will probably dictate that only cardiologist consultant can prescribe the appropriate treatment. Cardioversion is frequently not an option unless the patient is fully anticoagulated and in range so it is difficult for A and E to do much other than observe and comfort.
This subject has been aired many times and really apart from finding a different way to talk to the patients there is little the doctors in A and E really can do.
Bob
Hi Bob, thanks for your reply. It's all so confusing, being told to go to A & E after 2 hours of AF by a cardiologist then getting negative reactions by the A & E doctor. All I know is that it makes me feel so ill and I'm scared of having a stroke and I just want it to stop. I'm on so many drugs for it that I'm rattling but nothing seems to work. I'm having an ablation done and see the cardiologist who will be performing it on June 11th so hopefully it won't be long after that when it will be done. Denise.
Denise, If you are on anticoagulation which you must be for ablation then your stroke risk is very much reduced. If you aren't already then demand to be.
Bob
Hi Dee - Was you heart out of rhythm or racing?
Jean
It was racing for me as I'm on drugs to keep my pulse rate low, 45-50 beats per minute and it goes into the 90's when in AF, so for me that's racing.
Denise.
So sorry to hear you are having problems and hope your episode is calming down again now. They really can be devastating I know from experience.
It never ceases to amaze me how cavalier medics can be, I wonder how they would react if it was them going through it. Just bet they would be banging on the door of A&E begging for help. Such crass insensitivity and lack of empathy and understanding some medics display enrages me.
Its your heart for heavens sake not your little finger hurting. 'What do you expect me to do about it' indeed, well some help and medical attention would be a good start I suggest.
So its not life threatening, try believing that when in the midst of bad episode, it certainly feels as though it is and even if it isn't its still a major organ in chaos, try dealing with that ongoing yourself doctor and I bet you would not be so dismissive.
Where are you based, is there another hospital you could go to in such circumstances. I am so grateful I have an excellent EP and also a good local teaching hospital which has always been there helping me on my visits to A & E in the midst of AF episodes and a super GP too.
I hope things settle down very soon, please do not be pushed around its your right to have good quality care and not to be made to feel a nuisance. A nuisance is someone too drunk on a Saturday night to be able to stand andwho falls in the gutter in a drunken stupor hurting themselves and needing medical attention, not you. Argh. Rant over!
Thanks for replying. It's so hard to understand the different attitudes and know what to do when you're told by one doctor you need to go to A & E after 2hours then you get the A & E doctor asking why you're there!!
I must admit I nearly said to him that I wished it on him so he would know how bad it felt the jumped up little pipsqueak !!
The next nearest hospital to me is an hour away and that has got a poor reputation so I will just have to get the ablation done and hopefully I will be sorted. Denise.
Just a thought: when you see your cardiologist ask him to write the answer to 'when should I go to A & E?' on a bit of paper and sign it. AF isn't a one-size-fits-all thing.
I've sometimes rung the Ambulatory Care Unit to ask for advice rather than attend A and E.
Hi Dee, I can understand how upsetting it is to be treated in this way. Can I ask where you are located? I have been to AE many times. with fast AF but have never met with this reaction. Don't know what was said behind my back though ! Lol. How are you now? I assume that your heart rate was not particularly high? Sandra
Hi Sandra, I'm in Lincoln and the hospital there has been under investigation for a poor performance so I don't have a lot of trust in it. I'm having the ablation done at Leeds General as Lincoln doesn't do them anyway. I'm on medication to keep my heart rate low-bisoperol, flecainide and Cardicor so my resting heart rate averages 45-50, but goes up to 90-100 in AF, which for me is double but they don't seem to take this into account. Also my blood pressure goes very high so my big fear is a stroke. Denise.
That doctor is a plonker, just ignore the idiot and certainly don't get upset about it. You'll meet more yet. I ignore them all now except my EP and his staff. AF is not on their list.
Last time I went to A&E I told the doctor I did not want to stay in, and I knew I had an arrhythmia and I also knew they couldn't do much about it and that's not why I came to A&E anyhow. But they did an ECG when my pulse was all over the place. They threw it in the bin and did another when my pulse was OK. The doctor then discharged me. I asked her why they had thrown the first ECG away and she said, well you didn't want to stay in did you? Haha.
Got to see my EP soon after and got things sorted 
.
Koll
I always ask for a copy of any abnormal ECG - it's better than describing what you think your heart was doing at the time.
Good idea Rellim
Hi Koll. It's just all so confusing when one doctor tells you one thing then another thinks you're wasting their time as it's only 'AF'!! Maybe they need to experience it!!! Denise.
Having received offhand treatment from a particular cardiologist, I can say that it maybe very damaging if you don't deal with your concerns. If you feel that it would be helpful, make a complaint or discuss with the PALS at your hospital. I failed to do this and have regretted it for many years. It's even in my notes that the way I was treated contributed to my not seeking further treatment earlier. I still have a profound mistrust of most doctors. Not believing a patient is one of the worst things that a doctor can do.
When I was diagnosed with AF 8 months ago I was already in persistent AF. In November my EP said only realistic option was an ablation. Did my research and ageed (I didn't know that this forum existed but did know and look on main AFA website). Had it at the end of March and it took almost 6.5 hours. I only lasted in sinus rhythm for under 72 hours (I had been told by EP in November that he did not think that there was any chance that it would work first time in my case). Already on waiting list for second ablation. Absolutely no regrets. I felt so good in sinus rhythm for those few hours (apart from bad headache). I have no hesitation going for the second one. My recommendation is go for it!!!!
Hi Peter. I'm not in persistent AF-don't know how you cope as my last episode lasted 35hrs and it wiped the floor with me!! I can cope with the little fluttery beats but the Big Bang ones are so uncomfortable and sleep is an impossibility. I'm seeing the cardiologist who will be performing it on June 11th so hopefully it won't be long after that. Denise.
Some days are worse and harder than others. However overall from reading posts on here my impression is that those in persistent AF don't get some of the extreme swings that those who are paroxysmal. On waiting list for my second ablation but that may get delayed by the heart valve specialist who I am seeing on 10 June.
I think you could be right about that after reading what others have written.
Mine does little palpitations then nothing for a few seconds and I can feel the build up, then I get 3 or 4 massive thuds which I feel are making my whole body shake and those are the ones that are really uncomfortable, I feel as though my heart is coming up in my throat and I can't lay on my left side when I'm like this as it actually hurts.
Well I can't lay on my left side at all and on the odd occassions if I do so accidentally in my sleep I soon wake up!!!
Go and see a good Electrophysiologist and see how you are placed for ablation therapy
this is the only procedure which may fix your problem depending on all factors with your health. Generally speaking the procedure has excellent results. The drugs will make you feel worse as time goes on. Try and find an EP who has performed many ablations to ensure best prognosis.
Hi John, if I could afford it I would!! But my pension doesn't run to that!! I'm seeing the cardiologist on June 11th at Leeds General so hopefully it won't be long after that. Denise.
A GP can refer you to an EP (Electrophysiologist) as they deal with the electrics of the heart whereas a general cardiologist usually does not.
However as your appointment is only a month away it may be best to see the general cardiologist (see if he is listed on the main AFA website as a EP) so as to get some tests, etc, rolling. Also look under the hospital you are going for to see if there are any EPs at the same hospital and if not ant EPs within the same trust. However you are not restricted to the same trust even if they do have some EPs.
If necessary you could always ask the cardiologist who you are seeing to refer you to an EP or you may have to get
Nannadee. Just seen some of the posts you have given above which probably negate quite a few things I said in the above post. As you are having an ablation I would have thought that he is an electrophysiologist.
I assume you are on an anticoagulant, Nannadee?
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