Not good news I’m afraid, after contacting PALS a manager from cardiology rang basically telling me they have no dates for duel procedures due to staffing. She assumed I would be accepting of that and was quite shocked when I informed her I wasn’t. After much backwards and forwarding between us and her eventually acknowledging that having it cancelled 3 times and having 2 pre ops isn’t acceptable. She agreed to contact both surgeon and Ep to see what they could suggest as an alternative. I’ve also emailed Mr Hunter again myself. My main moan is they shouldn’t be offering duel hybrid procedures if they have no intention of performing them. So sorry to all you folk who have got your hopes up after I got so excited last July. I’m sorry if I’ve contributed to your disappointment that was never my intention. I genuinely believed that I would receive the appropriate treatment before Christmas 2022 as promised. Who knows what happens next. And to top it all I’m now 3 chicken’s instead of 4, nutmeg had to be put to sleep today.
update on Sheffield : Not good news I’m... - Atrial Fibrillati...
update on Sheffield
I'm so sorry for you. There is something very wrong at your hospital to offer you this procedure and then let you down multiple times. What else can you do though other than complain as you have. I hope Mr Hunter can come up with something.
Sorry about Nutmeg🥵 x
Sorry on all counts. It is quite unacceptable to have your hopes raised in this way and if you have copies of all correspondence I would hang on to them with a view to leverage.
So sorry to hear this. Is it possible to have 2 separate procedures? Or do they have to be done together?
I was just wondering if Mr Hunter could maybe do his op then at a later date the EP do his procedure. Not ideal as it would mean 2 general anaesthetics, but better than the stalemate situation you are in now.
I do hope things work out for you soon.
Sorry to hear about Nutmeg x
It's so disappointing isn't it, for you and us who were given hope that we might follow your path. I guess fate has stepped in and taken over, but I believe there may still be a chance for you. I hope and pray that they agree to go ahead with your procedure as you were let down and had your procedure cancelled so many times.
So sorry to hear about your dear Nutmeg.
Jean x
Ah bless u hope you can get some answers soon xx
This absolutely sucks. I am so sorry for the disruption and disappointment you have been put through. So much for NHS patient centricity! I can only hope that they do an about turn sometime soon and deliver what they promised. Sorry to hear about Nutmeg too. I hope you get better news soon x
so sorry about nutmeg my love 💕
I feel more responsible than you for raising hopes!! It seems that the NHS can cope with mini maze but not hybrids for now. It’s heartbreaking, as you say to commit to doing the procedure then cancel 3 times it is simply unacceptable. Must be an awful environment to work in too as you said the surgeons were available this is a management decision. Unacceptable all round!! Xx
So sorry to hear about this, and about Nutmeg too. I hope that you can get something sorted - wondering if they can change it to offering the mini maze with the catheter procedure at a totally different time.
Don’t worry about raising anyone else’s hopes, I’m just annoyed that yours have been dashed repeatedly.
thank you all for your kind words re procedure. Im going to inquire if they can split my surgery so mini maze first then ablation later. Nutmeg had a good innings all my chocks are rescue so would normally go to slaughter at 72 weeks. She was 6 so had 4 1/2 years of freedom. The vet was very gentle and kind with her.
Oh so sorry to hear of nutmeg.I feel so angry on your behalf! What the feck is going on there....I hope your determination to not just accept the situation gets attention.
I hope Dr Hunter is as aghast as we are.
Grrrr.
Sorry to hear about the cancellation and your loss of Nutmeg.
I know of Mr Steven Hunter from Alison who has done so much to inform us all. by sharing her research and her mini-maze experience with Mr Hunter some ten months ago.
Having had a mini-maze with Dr Ohtsuka in Japan three months ago, I can only advise you to hang in there and to push for it. I've had the thoracoscopic part only (via the chest and not the catheter ablation), and have been in NSR since the Op (barring a few days in tachycardia immediately after). The heart has receded from my consciousness and does not need my active attention. Good luck and I amhoping to hear good news from you !
I do hope they can get something sorted for you. So sorry about Nutmeg, how wonderful she had all those extra years of freedom. x
so sorry about nutmeg. I do hope Mr Hunter can give you some answers. It’s not right to be mucked about like this and have your hopes raised. I really hope something is sorted for you soon. x
That's doubly miserable for you. Lets hope you get some better news soon.
Really hope it gets sorted this year for you after last year's disappointments. 🤞Well done for standing your ground. One cancellation happens but 3 !!
Sorry to hear about Nutmeg. My daughter lost all her 5 chickens to a fox this year despite all her precautions ( they were free range in the day and were in at night ). They were so sweet and funny and part of the family. x
so sorry about your daughters chickens, if she decides to get more, fresh start for hens is a great charity that rehomes commercial hens.
Thanks for reply - we live in France. Will you replace Nutmeg?
we will replace her but not till the spring and then will take 2 or 3 more. I’d like ducks too but might result in divorce 🤣
I had similar I just keep moaning to pals and asked my complaints to be directed to the chief exec I kept a diary of my calls and treatment plan which was non existent plus expressed my fears constantly all on email
I did get there in the end with the help from Pals
Oh nooooooo! I'm so sorry to hear this on both counts. Poor you. 3xs & 2 pre op assessments. You are doing the right thing though. A friend of mine is waiting for a simple heart valve replacement with Mr Hunter in Sheffield. Been a year since diagnosis. She now looks quite poorly & is breathless and has had to say something. They moved her from a category 4 to a 2. I hope this means she gets her op soon. She too will probably have to have her pre op assessments repeated....they were months ago! There seems to be a problem with heart ops fullstop then in Sheffield
Very worrying......
Kick up a storm.....you have to think about your needs...... quote the NHS charter.
This gov have has a lot to answer for underfunding our NHS....lol.
😢 So sorry about both. I can see their problem though. I need a new hip but not even asking because I was told they won’t do it unless an ITU bed is available so can’t go private either 🙄 Having got so far it is terribly disappointing ❤️🩹
That’s a pain about your hip. Is it restricting you much.
What absolutely rotten news. I'm hoping that your obvious disappointment, and letters to all around regarding same, they might compare notes and make the effort to fit you into their schedule. I'm so sorry about Nutmeg -- it's obviously a sad time for you.
Really sorry to hear that. How very upsetting. 🥺 I hope they can do something for you soon.
Such a shame to have your hopes dashed again. Hopefully things will work out for you as soon as possible.
Oh gosh. So sorry on all fronts. Frustrating to say the least re procedure. And it's really hard saying goodbye to one of the girls I know.
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