Just back from a visit to the heart failure nurse, blood pressure at an all time low 75/57 I am actually here I ask, I then said to him that my cardiologist had told me I was going in on the 15th to get an icd fitted but had no confirmation, he then phoned the hospital, they have nothing for the 15th only a provisional for the 22nd, I am at a total loss about the whole thing I was told I had to cancel my holiday to Spain for the new year which I duly done and now this, I am angry, upset, to be polite, I took my cardiologist word as gospel, not that I think he was lying about it but someone gave him that info without a thought of the consequences, will it go ahead? Do I sit about for the rest of my short life and not book anything, just in case 😭, it's not as if it's just me another three people, were changing plans to suit me and go later, but what's the point when no one will confirm anything, #upset, also my work never paid for leave I was owed and npower are puting my dd up £25 a month, I am now going to crawl under the duvet and stay their, char xx
Had better days! : Just back from a... - British Heart Fou...
Had better days!
Char..... so frustrating.... but may I suggest you call the ICD clinic yourself.... explain all that has happened and also that you are very concerned health wise too. Then ask if they can give you a confirmed date so that you can plan for this. Its very difficult this close to your op if they do not have any confirmation to give you. You will have a long life hun.... but think you need to chase them now and explain how very stressful this is for you.
I was told at the start of the process..... do chase to get answers as we do miss things. That was by one of the doctors.... and it was the best advice I was given.... as quite a few things for forgotten and missed.... but because I chased I was able to resolve and keep things moving. So please come out from the duvet and make that call.... either to ICD appointments.. .. or to the consultants secretary. Let' see if you can get this op done by Xmas.
're your bills..... they always increase direct debits .... trying it on.... however you can go back to them and insist you want to pay a lower amount per month maybe offer to pay a fiver more than you did before. They should them alter to the lower figure. Big hugs xx
Thanks I will give them a call, which I should have done sooner as I had a niggling doubt that something was wrong but my cardiologist was just so emphatic that it was that date saying in no way could they bring it forward and he didn't want it any later! and also very apologetic for making me cancel my holiday,and now this, I am hoping my heart nurse will get back to me soon,if it goes ahead on the 22nd it's so near Xmas, I was obviously thinking I had 10 days and I am making dinner for 6, not a lot in general but with limited arm movement could be a nightmare 🙁 I will phone n power see what they say, they put it down too much previously, I should have phoned them then, but with everything else I never got round to it xx
Can totally understand your frustration, Char. Hope you make it out from under your duvet soon, you will surely feel a bit better once you start taking control of the situation, as much as is possible. Re Christmas, there is no way I could have made Christmas dinner for six people ten days after the procedure. You're not even meant to hoover at that stage! I think you need to let someone take care of you (and everyone else) this year. I know it might not be easy to find someone willing to take charge, but could you at least find someone you could delegate to, shout orders from your comfy seat? Next year you will be feeling heaps better and can make up for lost time then. Hope you get some definite answers soon. Go kick some butt! X
Morning Laura, I just wish it was all over and done with, he was just so sure about the 15th because he is on a time constraint for that trial I am doing with the cardio mems thing, which he talked me through again at my last appointment, and now I just wonder when they will let me, about the 22nd, this just seems to be going on for ever it's been so long now since they first mentioned it, I am beginning to wonder if it's really necessary, I never thought for a min I couldn't do Xmas dins! I think because I stay myself I am very territorial lol, the last time my boyfriend tried to help he broke my hoover, jeezo I dread to think about it, he has never made a roaster in his life never mind Xmas dins for 6! But then again mabe it won't happen and our hols were cancelled for nothing boohoo ✈️😭xx
Somebody somewhere surely must be able to give you a definite date, especially if it could be just a few weeks away. This time of year people need to know what they're doing, as we all have plans to make, don't we? Really hope your holiday has not been cancelled for nothing, that would be so upsetting, I agree. Things will be so much better once the procedure is over and done with, just sorry you have to go through this pain-in-the-arse phase in the meantime. Lots of love x
Thanks Laura, I think the time of year does make it worse, I hope my heart nurse will here back from the jubilee on Monday with something definite, we are looking to change our holiday to May with one of the other couples, I am scared even to do that in case something else happens or it keeps getting delayed, life used to be so simple xx
Hi Chaz I was interested to read your post - I had a CRT-d fitted on Nov 22nd, that's 2 wks today & although I think I'm bloody marvellous compared to then, I can assure you that you'd be going down with stress if you had an ICD fitted 10 days before Xmas. I have lots of use in my left arm now but I still have to stop myself stretching on a morning, getting stuff down/putting things back on shelves higher than my shoulder, & generally using my left arm when filling the kettle etc.
My husband has been 'doing the housework' (come on ladies, we know what that means!) but I've had to bite the bullet - no way do I want these wires dislodging & my scar opened up again. You'll appreciate the advice when you get there Chaz, & there's always good advice on this website.
I've had to cancel 2 holidays this years due to my circumstances - hell, this time last year I hadn't a clue I was anything but fit, but now I'm looking forward. Your ICD will hopefully do that for you - in the New Year - AND you'll get your holiday with peace of mind. Take care, Pam x
Hi they have now changed it to the 22nd eeek, Xmas dins is in the freezer, but I stay myself and I am so territorial about my kitchen lol, I think I still have 6 for dins, my wee mum is 88 but we had a laugh when my brother said he would cook? toast springs to mind 😂, I will try and delegate, probs won't have much choice but to sit on the couch and shout orders 🎅🦃🦃🎄lol xx
OMGoodness! I was still mostly in bed for the first few days so I'm wishing you well Chaz. It was easier so I wouldn't be tempted to lift things. Delegation will be the way to go, but you sound very organised so good luck with everything. 👍🏼
I was just about to message you to ask if you had a definite date yet. Timing will never be great at this time of year but at least your holiday wasn't cancelled for nought. Delegation is definitely the way to go over the festive period. Good luck with Christmas dinner (and the procedure/device obviously 😂) and feel free to message me if you have any last-minute wobbles. X
Hi and thanks, I still haven't received a letter, but Angela my heart nurse at the jubilee phoned on Tuesday and said it was on the system for the 22nd, I would just like to see it in black and white, so I know for sure, we got the holiday re arranged for the 28 th of May one of the other couples cancelled as well so the four of us have re booked, it was £38 pp to do it, not so bad and some sunshine ☀ 😎 to look forward to, are you all organised for the wee ones Xmas 🎅xx
That's great news about the holiday, May will come round pretty quickly and you'll be 100% used to your device by then. Will be nice to have it all done before 2018 begins too. I'm feeling fairly organised for Christmas, actually. Helps that my mum is making dinner for us all (lucky me, I know!) and my daughter, for once, has requested gifts that actually exist rather than things that must be custom made. Last year her heart's desire was "a cuddly girl zombie with ginger plaits" (which required me to make a wig from orange wool) and a fox mask exactly the same as her friends, sparkly pink on the inside JUST LIKE HER FRIEND'S. Took me ages to track down the same mask online (which cost £1.50 or something) and when it arrived it was plain white on the inside! Noooo! I had to paint it with sparkly pink nail varnish to preserve the magic of Christmas 😂 My main deadline/stress this year is making gifts in time to post to my FIVE nieces and nephews in France (can't afford to buy five decent gifts, thank goodness for my mad crochet skillz) and to my goddaughter in Denmark. The last post dates always manage to creep up on me. X
That's amazing, it's so personal to be able to make lovely gifts, I am pretty useless at that type of thing, it's lovely on Xmas day when the wee ones still believe in santa 🎅 I can still picture there wee faces, but since mine are 36 and 39 it was an awful long time ago, even my granddaughter is too old now, trainers and clothes were on her list, not quite the same! 🎄xx
Hi again that's the letter in now, pre op 18th op 22nd do you know if they keep you in overnight? Book says yes but nurse seemed to think home same day xx
I was kept in overnight and knew beforehand that's what would happen, was no mention of getting home same day. You'd think nurse would know though?
I would have thought so, I am sure when the cardiologist spoke about it he said overnight, I suppose they will say on the 18th, I hope xx
Laura is so right char.... you would not be able to cook dinner if you had the op on the 15th.... and you have to be careful not to lift the arm at that stage in case the wires dislodge. Please be kind to yourself this Xmas. If others can do the cooking..... and you just rest up and look after yourself. I hope you hear back from the hospital soon and do let us know xx
Hi and thank you, as I said to Laura I had no idea after 10 days I wouldn't be able to cook, I just thought mabe lifting out the oven might be difficult but nothing else, it sounds like, if they ever get round to it, it will take a while to recover, I just so wish it was over xx
Hi Chaz, read your post and wondered how you are 6 weeks on. I had my ICD fitted 2 days ago and would love to hear how quickly you recovered? Thanks
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