Still waiting for new ablation date with my heart playing games

[pottypete1]

Since my 5th ablation was cancelled last week due to another patient's emergency procedure I have had a bit of a time of it. The cardiac admissions clerk tells me that I am not now at the back of the long queue but unfortunately they still cannot find a way to give me a new date and fit me in right now due to lack of GA cover. Clearly it is difficult to fit me in with all the necessary specialists that will be needed.

As I had been in AF for a week and was cardioverted on the day my ablation was cancelled I had hoped that this would, as it has in the past, give me a few weeks free of AF.

No such luck. Each day I have been having numerous ectopics and then.........

Following being at a Theme Park with 3 of my grandchildren on the hottest day of the year so far (I didn't go on the rides) I went back into AF. This time I took extra Flecainide and Bisoprolol and got it back into NSR within a couple of hours which was a real relief.

However, last night the same happened again. I had the same success with extra drugs but unfortunately the after effect of a bad bout of AF (however short) plus the extra drugs leaves me very nauseous and feeling really bad.

Without any direct communication lines to the Cardiologist it is so hard to know what is the best thing to do as I feel that the episodes are getting closer and closer to each other and my real fear is to get stuck in AF for an extended period of time.

I am relieved to have been able to get back my NSR myself, something with which I am normally successful but I cannot stop the anxiety each time I am in AF wondering if I might have to go and seek advice at A&E and the possibility of them looking at my recent records and saying something like "well you had a cardioversion 2 weeks ago we feel you should just wait until we can fit you in for your ablation.

Mind games coupled with a herd of horses continually running over my chest has finally got to me after 25 years. I sometime find it hard to believe that I have coped for so many years yet now for some reason I do not seem to have the same resolve. I wish I was like one of my grandsons who recently was awarded a certificate by his headmaster for "resilience"

Oh well that has got it off my chest for now hope I haven't bored those who were willing to read my post,

Pete

[Finvola]

Not bored at all Pete - you were soooo close just recently, only to be let down and that is more likely to have ramped up the anxiety level rather than you becoming less able to cope after 25 years. Well done your grandson - I suspect he inherited his resilience from his granda!!

Can you contact your cardiologist's secretary either via the hospital or your GP for advice on your current situation and the probability of a date soon? Unfortunately, I agree with your comment regarding A&E as I don't see what else they could do - unless your symptoms are dangerous.

Incidentally, even watching the theme park rides would make me ill enough to be worried - even the garden swing gets treated with some suspicion as it makes me slightly dizzy.

Keep well

[pottypete1 in reply to Finvola]

Hello Finvola

I have tried to be patient but as I have the Cardiologist's Secretary's email address I thought I would write a letter explaining what is happening to me and to seek advice.

My GP is a typical Dr Jack of all trades and I know more about AF than he does. My control of my condition and communication with the specialists has been more successful than when I have tried to get our Doctors' surgery involved.

You are right about watching to Grandchildren on rides at the theme park it was not good for me but I didn't want to disappoint them and it was too much for my wife to deal with on her own.

Hopefully I will get some successful responses soon.

Thanks for your kind reply.

Pete

[jeanjeannie50]

Hi Pete, I can understand your frustration after being let down with your ablation date and am sure we would all feel the same. Are you free to go in for an ablation at any time and if so have you told the hospital so that they can call you if someone has theirs cancelled for health reasons, INR not correct etc?

Whenever I ring my AF nurses I make sure I use their christian names, am absolutely charming and very grateful. I act pleased that I've got them and no one else. Recently while visiting a nurse at my doctors surgery, she had to speak to another nurse on the phone re me and she said of me, you know that lovely lady Jean XXXX. I thought to myself, yes it works! It's uplifting too to hear that they think you're nice.

Ring whoever it is that's arranging your next ablation, have a kind voice and enquire politely, ask who you're talking to and then make sure you use their name, be charming and thank them for every thing they do. Go for an Oscar with your acting skill! Honestly, it works.

Jean

[pottypete1 in reply to jeanjeannie50]

Hello Jean

No there is nothing stopping me going in at short notice and my INR is being checked every week and is averaging 2.5.

I promise I am being polite and doing my best to be friendly.

I think the problem is a combination of getting an anaesthetist to cover the holiday period and the mere fact that there is a list stretching 3 months + and they are trying to shoehorn me into the system and not at the end of the queue.

My problem is that I am getting far more ectopics and for me to go into AF every other week is worse than I am used to.

Hopefully when everyone returns in September something will happen.

Thanks for your kind advice.

Pete

[PeterWh in reply to pottypete1]

I would be inclined to write them a letter and post tomorrow so it's there Tuesday am giving them a few bits of the details about cancellation and then saying that you have just thought (say this even if you have already told them) that you should have said that you are willing to have a last minute cancellation. If this is true you could also add that this is the case even if it only means that you have a few hours notice of admission.

[PeterWh in reply to PeterWh]

Now see you have secretary's email. Does she do admissions or is there a separate admissions team. If secretary does then send it 7.00 am Tuesday so it's at the top of the inbox!!! If doesn't send to admissions team and email secretary as well.

[pottypete1 in reply to PeterWh]

Good idea Peter

post round here is bad so will still probably send it by email as I had a good response last time I communicated this way.

If I was lucky enough to get admitted at short notice the advantage is - no time to dwell on it in my mind.

Pete

[seasider18 in reply to jeanjeannie50]

At my local hospital secretaries no longer answer phones it all goes to voicemail. It starts with a long list of things that they don't do including fitting you in for an earlier appointment. They point out that is for your GP to do. That applies to a consultants secretary at another hospital who wanted some of my records and to my GP when trying to make contact.

Last time with unanswered E-Mails and voicemails I phoned the cardiology ward clerk and asked if she could pop next door to speak to the EP's secretary for me.

[Oldcarol in reply to jeanjeannie50]

Jean!!! U must have been in healthcare at one time!! Yes it works!!thanks for passing that along to others!

Carol

[pottypete1]

I was woken at 03:45 as my heart had once again slipped into AF. I took extra Flecainide and Bisoprolol again and got my rhythm back 1:30 hrs later.

I am worried as the frequency is unprecedented for me. In addition I won't state the dose of Flecainide I take but doing this so regularly concerns me.

I am now feeling like I have been pulled through a hedge backwards.

As we discussed yesterday I will communicate with the Cardiologist on Tuesday if I can.

I so often have issues at the weekend.

Pete

[Oldcarol in reply to pottypete1]

I do t know if this will help u , but my ER doc is a friend and he told me to run a sink full of water and put ice in it and dunk my face for a few seconds. Drink something really cold. If u could get someone to pour cold water over your head might also help. Just a suggestion- not a scientific proven method but it worked for me.

Carol-be careful w extra meds

[pottypete1 in reply to Oldcarol]

Thanks Carol I will try that next time.

Pete

[seasider18]

Will A&E have access to your recent records? They don't at my local hospital. When I went to Eastbourne A&E in March of last year the triage nurse said that I was last there at A&E in November 2011. I said that I had since had heart surgery at another hospital and prostate surgery and cataract surgery at this one and several outpatient appointments. She had no way of getting to them. On the following Friday I had a cardiology appointment and the registrar had no record of my A&E visit. Nor do A&E now give you a discharge letter for your GP.

[PeterWh in reply to seasider18]

If at the same hospital normally yes they should be able to. Beyond that it is very variable. If the two hospitals are in the same CCG and have been for some years then the answer is usually yes. However if the two hospitals came together because of the CCG changes a couple of years ago then more likely not.

Where I live GP has access to hospital results (and possibly notes) for our CCG. About a year ago the adjacent CCG has given access because their hospital is closer and A&E trips, maternity and a few other things are dealt with at the closer hospital.

[seasider18 in reply to PeterWh]

Twenty odd miles apart and adjacent Eastbourne and Brighton cannot communicate.

[pottypete1 in reply to seasider18]

Yes this is so unsatisfactory. There is no joined up thinking. You will be aware that the NHS spent over a billion pounds on an IT system that was supposed to mean that all information was available over the system. The system was never launched - the investment had gone down the drain.

[seasider18 in reply to pottypete1]

Very typical of large IT projects.

[pottypete1]

Because my A&E is at the same hospital as the Cardiac Unit which is in itself one of the UK's centres of excellence all my records are in the same place.

I am also fortunate that I live only 15 minutes from the hospital.

Thanks as always to all who have replied.

I will email my letter later today.

Pete

[Oldcarol]

Pete. Don't give up. I can't imagine u having to wait like that for your ablation. I was diagnosed in February and had my ablation July 11. I could have had it sooner, but I was the one skeptical and put it off. I am so glad I had it done.. I am in US.

Wishing u the very best.

Carol

[pottypete1 in reply to Oldcarol]

Thanks for the encouragement Carol.

I have just written to the EP and hope that this might influence things. Hopefully he can give me some more advice for the interim period.

Pete