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I'm fed up!

Posted , 6 users are following.

lisa98146
lisa98146

Just a vent. Got multiple stones, thickened gallbladder, inflammed bile duct and still abnormal LFT'S. Yes, I'm on the list for gallbladder surgery and yes, I've said I'll take any cancellation.

I'm sitting here with a stitch again and haven't felt well for the past few days. Tired, flu like, chills, itching and intermittent stabbing pain on the right side. I'm trying to get out and walk and focus on the fact I will get surgery eventually. It's so hard. I've been waiting since mid October for surgery and still no date. I had a pre op in November. Tick tock tick tock. I went to my GP a week ago to see if I can be bumped up the list a bit. No, I can't. But he did send me for a blood test to see if my abnormal LFT's have risen at all and if they have, he will write to the consultant. No promises. I had to wait a week just to have the blood test. Had it today. Tick tock tick tock. Hospital said it will get to my GP in a few days. Tick tock. I'm so bored with waiting! I'm fed up with the diet. Fed up with listening for every gurgle in my tum. Fed up with worrying that any niggles could land me back in hospital. I just want it OVER! Rant over :-/

0 likes, 37 replies

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  • LittleMissDolly
    LittleMissDolly lisa98146

    Posted

    Oh Lisa Honey. I hear you loud and clear! Last week I was cancelled 3 hours after admission for removal of my post operative mass. After alot of to-ing and fro-ing, confirmed at 1.30 pm today that it was rescheduled for tomorrow, first on, then postponed for possibly 2 weeks at 4.50 pm for safety reasons as there are no beds available in the hospital. They are having a crisis and all non emergency operations are cancelled for the week! Like you I'm fed up of being ill! I wish I could make it better for you. Hang in there. Just think,by the Summer this will all be over. Take care xx
    • lisa98146
      lisa98146 LittleMissDolly

      Posted

      Oh ffs!!! That's terrible :-( I DO understand that hospitals are full up at the moment but it's all the cuts and nhs consultants doing bloody private work. I'm convinced of it. It's at crisis point and it stinks! So what now for you? They can't keep cancelling under health and safety. They'll have to put you in private. It's not on!
    • nana_loon
      nana_loon LittleMissDolly

      Posted

      Thats awful you being so close to getting your op .we will all be emergency cases if they keep us waiting any longer we need more hospital and staff with all these people in the country. but thats another story . i hope we all get sorted out soon and not in limbo any longer .linda
  • cynthia89958
    cynthia89958 lisa98146

    Posted

    OMG, Lisa you are going through the mill. I am less far on than you in this harrowing journey and already struggling to cope. It is just not fair for people to have to suffer for so long I would never have believed it could be like this. Hope u soon get what u need and are on the road to recovery xx
    • lisa98146
      lisa98146 cynthia89958

      Posted

      Thank you, it is harrowing. Every time the phone rings I jump. I wait for the postman wondering if today will be the day I get a date. Hospitals tend to do their lists at least month in advance so every day I don't get a letter I know it's still at least a month away. Lying doctors told me it would only be two months. That's what makes it worse. You can't trust what they tell you. It's very frustrating. After hearing little miss dolly above, the date is only the first hurdle. Doesn't mean you will get surgery on that date! It totally sucks!
  • nana_loon
    nana_loon lisa98146

    Posted

    Sorry lisa you no further on than we spoke last . but your blood results shouldent take too long to come back . i rang surgeons secratary yesterday to pester them again she said they had been given instructions to reduce non emergency intakes i told her surgeon said jan or feb . her reply was they shouldent be telling patients that when there is a 18 week waiting list .she said im on the list but will be more like april i was FUMING . im just about at the end of my tether now with this diet and constant bloating even after drinking water . Did your doctor say what they going to do if lft are still high ? linda
    • lisa98146
      lisa98146 nana_loon

      Posted

      Hi linda I know what you mean. I was FUMING when they told me no date at my pre op and potentially March back in November, when I was told it would be just a two month wait by doctors when I was in. My gp said that IF my LFT's were higher than they last were, that MIGHT be a way to get my surgery quicker. That's all. My 18 weeks wait is up on 24th of Feb anyway so I really don't think it will make much difference. I'm hanging on the skin of my teeth financially. I was looking for work when I got admitted to hospital and told I needed surgery. I actually risk losing the roof over my head if I can't start work soon. It's all adding to the pressure but financial reasons don't count for clinical need. What irks me the most is nhs choices said 13 week wait in November when I'd been on the list a month. January they changed it to "up to 17 weeks" but I'm STILL hearing hospital is full and wait wait wait for a date. Grrr! I think 18 weeks wait is too long for gallbladder. It impacts on quality of life SO much.
    • sharon_02995
      sharon_02995 lisa98146

      Posted

      Gosh you are going through it, I was ambulances in on the 18th Nov and have my operation Friday, BUT we have Bupa healthcare through my husbands work so have done it through that, but still waiting all this time even privately! I was told that I could be waiting months just for a date, I am lucky that we have Bupa but when your in agony just just want it done. The pain is horrendous, and still on a low fat diet, but feel crap every day and feel like my life is on hold!

      Good luck in getting your date soon, the only suggestion I have, is when you get pain go into A&E make a nuisance of yourself, then they might bring it forward.

  • lisa98146
    lisa98146

    Posted

    I've just written to PALS again. 15 weeks now and counting. I was listed BY 20th October (noted on my discharge papers - hooray for having that in writing) so the 18 weeks is in fact up by 16th Feb. On the NHS choices the wait was 13 weeks in November which raised to 17 weeks in Jan for 9/10 patients. When they gave me a guideline date of March 1st they appear to have predetermined that I would be the 1 in 10 not operated on in that timeframe or even the 18 weeks. So much for clinical need eh? I was listed when I was an inpatient so I'm wondering if the RTT times don't apply to me? No one has said that to me so far but I suspect it is coming. However, I do have it in writing that lists are done by clinical need, so I am ready and waiting for that.
    • nana_loon
      nana_loon lisa98146

      Posted

      Hi Lisa .

                  im so glad you are armed with that information in writing perhaps you might get somewhere now. i was admitted the first time 23 oct and told straight away that i needed gb removed but they faffed about getting me to go to clinic etc in the meantime i had another attack 2 weeks later so in theory the 18 weeks should be up the same time as yours but ive nothing in writing they dident put me on list untill 22 dec what a farse . im just hoping and i know you are as welll that when we do finally get things done we will be better .but after reading other threads on here not always the case .anyway let me know what pals say good luck linda

    • lisa98146
      lisa98146 nana_loon

      Posted

      I will do linda. It never clicked before until hubby said that I was already predetermined to miss the 18 week deadline by my pre op in November and he's right. My trump cards are my discharge papers as it clearly states 'she has been listed for surgery' not 'she's going to be listed' and I have in writing that surgical lists are all based on clinical need. Therefore, they can't say the 18 week target doesn't apply to me, if patients it does apply to are being treated before me, just because of meeting those targets.

      But it is something I cannot find any information on and I will be arguing semantics. Apparently I was not able to pick choose and book because I was an inpatient and it wasn't a gp referal. The referal to treatment times apply to those people referred by a GP. So here I am 15 weeks later and I can choose to be referred elsewhere but the 18 week clock starts again.

      I'll be honest, I'm not entirely happy being treated at that hospital now but I really do not want to wait any longer than I have to. Targets are good in theory but hospitals clearly fiddle the figures. There was no need for you to go back to a clinic after discharge but it gave them more time. Makes you sick doesn't it? I've exausted my angles now at my GP AND even my MP. I've got three weeks to wait until I can make a formal complaint. I'm so cynical I'm expecting a date for it to be cancelled or for the consultant to say I need to lose more weight or something. It's not a nice place to be. :-/ Not nice for others either. Those at the begining of their journey can expect a rather hellish wait, even if doctors tell you it will be sorted quickly. They lie! Keep records of phone calls dates and emails from now on. The only thing you can do linda is ask them why they put you on the list in December when you were told you were already on the list. Which county are you in?

  • lisa98146
    lisa98146

    Posted

    I am shocked and devastated. I've heard back from PALS and I've now been told it's likely to be May or June now. Can you believe it? I can't. Apparently day case has been used as an inpatient ward and no elective surgery has been carried out in January. Has anyone told patients this? No. I'm FUMING
    • LittleMissDolly
      LittleMissDolly lisa98146

      Posted

      Oh Lisa, I am so so sorry to read this.  I can feel your shock and devastation too.  These people just don't get that the pain and other symptoms you have mean you don't have a life and are so very poorly.  I would get an appointment with your GP if I were you and see how you can manage your symptoms for the forthcoming months.  Can they give you more medication, up your pain relief, advise anything further.  I'm wondering if you are at the same hospital I am.  Because all non emergency surgery there has been cancelled for the rest of the week.  I'm wondering if there is a private messaging facility on this thing........
  • nana_loon
    nana_loon lisa98146

    Posted

    OH NO LISA.

                           the situation is impossible i cant believe it may or june . we both been admitted to hospital why couldent they do it there and then i was in for nine days as you were they surely could of done it then saving time money and a lot of worry they said i was too poorly to operate but if i was well enough to be discharged then im sure they could of done it . what is your next move now then? linda

  • lisa98146
    lisa98146

    Posted

    Well for starters the CQC is inspecting my hospital as we speak so I've fired off an email and a copy of my correspondence with PALS and I've contacted my local paper. Patients have a right to be informed. I can raise a formal complaint now because my treatment is not likely to begin within 18 weeks. That's my next move. I'm utterly devastated and furious.
    • nana_loon
      nana_loon lisa98146

      Posted

      Well you doing everything you possibly can . if its not untill june you will have to have another pre op assesment so that was a wast of time and money will your blood test results  be  back tommorow mine were back after two days . linda

                            

    • lisa98146
      lisa98146 nana_loon

      Posted

      Thanks girls. I know you are going through it. I'm not alone. My bloods are the tiny scrap of hope. I feel like eating a load of rubbish and staging a sit in lol
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