Disappointed and frustrated - Atrial Fibrillati...

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Disappointed and frustrated

Hutchie1 profile image
19 Replies

Just found out that my ablation is not going ahead anytime soon due to a shortage in specialist surgeons at the main hospital that does them. A blanket explanation and no further update.

Extremely upset and frustrated especially as I've waited months for this.....

Tablets are not working great..constant juggling and extremely tired and now unable to work. Everyday life is progressively harder. I'm only 52....

How do I stay positive about this when all I want to do is pull the quilt up ...i know there are people much worse off than me but today is just so upsetting.

I'm a glass half full type of person but today it's been knocked over.

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Hutchie1 profile image
Hutchie1
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19 Replies
BobD profile image
BobDVolunteer

We are all allowed to feel down from time to time and this must be a blow to you Hutchie. Feel down for a day and then get up tomorrow and keep fighting. As you say there are worse things that can happen .

Some progress might be made by getting your doctor to write and find out when your ablation may be scheduled or find another hospital within travelling range and see if you can be referred there . Anything to give you an idea of time scale will help.

Sorry to hear this. So frustrating.

I've two suggestions. Firstly you may like to see if they have a list of people who are prepared to go in at short notice. I don't know how much it applies these days but four years ago appointments could come available if the person scheduled could not attend for reasons like having INR out of range.

Secondly, as Bob says, have a word with your surgery and see if there's a fast track system via your GP.

Perhaps you could enquire if there are other hospitals you could transfer to.

10gingercats profile image
10gingercats in reply to

Someone wrote here fairly recently they had been offered a cancellation spot for an ablation......in c 4 days time I seem to remember! It was less than a month ago.I always ask about cancellation lists although not all Hosp. Trusts or depts within Trusts hold them.We have had three lucky strikes within a couple of years.One for hosp. dentist which is notoriously difficult to get.My husband had 2 hours notice but that was ok for him.

How very disappointing and upsetting for you.

I don't know where you are located but I'm wondering whether one of the London hospitals might be a better bet ?

Feel for you, but some good advice offered. It may not help you, but sometimes a patient on a DOAC might be better placed for a cancellation, best of luck.....

Which hospital Hutchie?

Hutchie1 profile image
Hutchie1 in reply to

Jubilee in Glasgow

in reply to Hutchie1

I’m sure you will explore alternatives......

Hutchie1 profile image
Hutchie1

Thanks everyone. I guess it's a waiting game now . I may need to start knitting ....can anyone teach me? 😊

momist profile image
momist in reply to Hutchie1

I can actually recommend that! I learned to knit only because my workshop in the garage is so inhospitable in the winter, and I felt the need to do something creative with my hands. Now I'm almost an addict. :-)

dmac4646 profile image
dmac4646 in reply to Hutchie1

That’s a strange one - I was offered an Ablation there with three months waiting in January ...no word of this then - I think Edinburgh also do them - I would not accepts this as a definitive answer - what has changed in 3 months ?

sharonrc profile image
sharonrc in reply to dmac4646

Yes Edinburgh Royal Infirmary do them, have around a 3 month waiting list and good reputation. Would have thought somewhere else in Glasgow might too.

Aprilbday profile image
Aprilbday

Oh Hutchie!

So sorry for the wait. Better to wait for a qualified specialist than to rush from someone that may require repeat ablations.

It will be ok. Knitting is nice but why don’t you write a book of poems! Or a book about waiting! Kids need books like that!! 😊

Snez1973 profile image
Snez1973

Hi, fwiw I understand how you are feeling...it is so hard to stay positive when it seems there is no light at then end of the tunnel. Up until 4 months ago I was so full of energy, and was running competitively. I ran the Wales Marathon last year coming in the top 20, after a 60 mile bike ride the day before. All that was taken away when I went in for an op on a torn meniscus in January and they found I was in Afib. My world felt like it had folded (again) I was scared for my family, job (which is a safety critical role), and myself. I too have struggled with fatigue and lack of motivation. It seems like when a problem or course of action is discovered it just takes so long to remedy. I am still off work 4 months on and am worried about the future. Try to stay positive though, as obvious as it sounds, as our outlook is often the only thing that enables us to work through our lives. Most other things are not necessarily under our control unfortunately. Good luck when you do get your date for ablation.

Maclan profile image
Maclan

I am so disappointed for you. Our health service seems to be falling apart. Could you ask your GP to refer you to any other units around the country ? I managed to get my mother transferred to Addenbrookes for an op she couldn't have in her own area. I will keep my fingers crossed and hope you get a good result. It's easy for me to say but don't let it get you down x

Nugger profile image
Nugger

When people used to tell us hard work never killed you & your health is more important than having money lol

15 grand gets you the best ablation money can buy, 1800 gets you a 5 min cardiovertion ( which I'm waiting for but not even seen cardiologist yet)

If you've got to depend on NHS then london is the place to be as that's where the top 10 hospitals are.

Keep taking the pills & the bull sh**

Jacqlihe profile image
Jacqlihe

Try University hospital coventry - Dr Faizel Osman - very busy cath lab but might be worth trying

IanWat profile image
IanWat

I had Ablation at the Jubilee in September. My understanding is that if you’re prepared to go ahead without general anaesthetic you will be seen sooner, as sometimes it’s that specialist which is in short supply due to emergency procedures (which cannot obviously be timetabled).

On the downside and a word of caution, today I had my first AF episode since the procedure. I also have PAF and I’m 50 - so remember it doesn’t always work first time around. You may need several goes.

fnurd profile image
fnurd

Have you tried "Choose and Book" via your GP? Not all GPs offer this but if they do it means you can go anywhere for your consultant, depending on waiting lists. My own view is that health is far and away the most important thing in live so I go wherever necessary to get the right treatment, and if you have to travel, then so be it. Edinburgh, Dundee and even Newcastle are all relatively close for you.

Another possibility is if you can find a reasonable waiting list you could shell out the £150 or so for a private EP consultation, and then get onto the EP's NHS waiting list.

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