Unbelievable

Can't believe I was in heaven 12 days ago waiting for my drain day to come. Friday, last day of week before I was due to have on the Monday I received a phone call from my local hospital informing me Leeds had cancelled my planned drain, they were sorry they couldn't give me anymore information as I would have to speak to Leeds. This call came at 5 pm. I rang Leeds 4 times that evening promised a call back, Saturday I rang 7 times again same as above, Sunday 3 times and nothing so I give up. I changed a few things food, intake of water, exercise and no salt at all I basically started living like a nun, but 4 days later I started to notice a difference. Anyway I received a phone call at 6pm on Tuesday from a nurse on ward at Leeds telling me to come in that evening I needed admitting, for what a procedure, first I heard of it and it wasn't a drain. I refused 5 minutes later call of a consultant trying to scare monger me into coming in. I won't repeat what I said lol. On the Wednesday 2 phone calls off 2 consultants (it's like waiting for a bus this) again I refused and told them I would see at appointment week later. I went yesterday and was weighed, 2 weeks previous I had been 83kg and now am 75kg so in one week lost majority of water myself thank God, doctor I seen was over moon with me and actually agreed that I needed a little help to get rid of the last bit so today it's water tablet time again lol. My main point trust your own gut instinct and fight your corner it's our own body / health and we do know deep down if were in need. They would of preformed an unnecessary procedure on me and maybe set me back for no reason.......

23 Replies

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  • Sounds like you've been given the right royal runaround. I think we all know how difficult it must be working in the NHS, all the cutbacks every public service is going through etc, but it is so frustrating when you are trying to ring them or you are being fobbed off or waiting for a call back. But don't get me started, I'll put my soap box away for now.

    Glad it all worked out eventually for you albeit with the added stress which none of us need. Stay strong. And you're right, no number of degrees or letters after your name means they know your body better than you.

    Take care x

  • Oh I was given the run around and like you say we all understand the pressures NHS is under, but all I needed was a little communication if I was a year down the line I wouldn't of got so stressed but with problems I have had I just needed to know why and I still didn't find out why lol. How are you doing better I hope x

  • Glad for you go you niceone can you tell me I've been on 40mg furosimide and 150mg spirolactone for the last year this did start at 50mg of spirolactone 2 years ago then he built it up to this amount but the thing is I don't see a great deal of difference and it can still be hard sometimes to have a whizz have you ever had these probs oh yes I must admit my ankles and lower legs are a lot better at times but my belly is not seeming to have any change and I do not eat a great deal at all a sparrow has probably got a better appetite I also have noticed when I get fed up with it and leave them out for a day I do whizz more so what's your thoughts please thanks bri xx

  • I not been on water tablets for over a year but I do know one worked better for me than the other but do I remember which one nope oops so this going to be a bit of trial to see. I do know once I upped my protein intake that's when I seen the biggest difference with water reducing, so if you are on protein drinks make sure you keep up with them, and I know it's hard to eat when your full of water so little and often is the best way and in between drink milk if you like it x. I hope your situation changes sooner rather than later :-)

  • Thanks for that and I will check the drinks out sounds good many thanks bri xx

  • I'm pleased your in the same mind set as me, no one knows your body better than you! Ive had a few problems over the past week and have refused to go to the hospital like my family wish...right decision or wrong decision, I said I just needed to wait out and see what happens.

    I am 200mg Spironolactone daily, so know the pleasures of the water tablets, have been on them for 3 and a half years now....as soon as I come off them within a week I look 5 months pregnant!

    I hope your feeling better and that your drain done the trick! xx

  • Didn't have the drain! But looking forward to joys of spironolactone for next 2 weeks lol

  • oh....well you can enjoy that minty kinda flavour those tablets give off! x

  • As a guy I found the side effects alarming!!! I had to come off them after a couple of weeks.

  • How so

  • en.wikipedia.org/wiki/Spiro...

    Look at the contents (1.4)

  • Bloody hell

  • I read that link and was shocked for a bloke what the actual side affects are I'm trying to leave them out now altogether and just have the furosimide but I have noticed my legs starting to swell up a bit with just the furosimide and the last time I got inflammation then infection inside under the skin then they split and the skin just come away and they don't heal properly now when it happens on or off them it's a trip down a/e to get them dressed and pressure pads always my bottom legs the scans gone like tracing paper

  • Hi there. Sorry to hear of the trouble you have been having but really glad to know you got through it. Yes you have to be strong to get through all this and you do get to know your own body in the journey. After my op i was full of fluids looked like a beached whale even had big water blisters on my toes. Went home still like this but had been given protien drinks to take which i had been told would reduce the fluids. It did all go eventually which left me skin and bones weighing 7st 10lb. Skinniest i have ever been lol. After that the weight and muscle started to return slowly. Just saying this to let you know i know how you feel but things will improve over time. You are a strong lady and it will get better. Kerp positive and i hope things improve for you. Stay strong xx 😊

  • OMG what a runaround ! I would have lost it .well done for losing some of that water ! I sort of have a good diet and I have always been careful on my sodium intake by using an app on my phone looks like I'll be back on the old spironolactone again after 3 years and yes I agree with you jojo and @chelle-pv always listen to your body as no one knows it better than you .glad to see things are good xx

  • jojokarek,

    You're so right.

    We are so often like sheep when it comes to our health. 'it must be right because the doctor/nurse/porter told me' Always question what you don't understand, make sure you know the identity of who you're talking to and as you said' trust your' instincts.

    In the past I have had a consultant who, complete with entourage, confused me with another patient, talked for 20 minutes and came back an hour later to acknowledge her mistake. A nurse who gave me somebody else's medication, which was difficult to correct as it was an intravenous injection.

    And what are the odds of this ? I was in a unit waiting for a gastroscopy in a unit with a patient / man with the same name as me , same date of birth but different year - that caused a few nurses to look a bit puzzled.

    Jim

  • Yes I've had the wrong med's a couple of time's in hospital. One particular time was straight after transplant in intensive care. I was given a steroid injection but I think I was given about 4 times the dose I was supposed to have. OK mistakes happen and thank god no long term effects, but the nurse that was supposed to be looking after me "ran away". It wasn't until later that day that another ICU nurse noticed I was left on my own. The thing was this kicked up a right sh1t storm because I was on a medical trial and every drug, procedure etc was being monitored.

  • Sorry JoJo may have missed something, do you know the cause of the ascities yet?

  • No I don't I can only put it down to when I was in hospital over Christmas and new year and eating the shit what was served up as the ascites started when I was in and I was discharged like that. So when I was home appetite was rubbish due to retention and I was living on soup but tinned so full of salt Doh, silly me lol. So as soon as I changed my diet and back to fresh food the retention started to go down..... So fingers crossed it's just a blip, but am booked in for a scan in a fortnight x

  • Great post, just goes to show how we can with some dietary changes help our bodies recover. Well done you xxx

  • Sorry to hear about your troubles..so many people needing drains and unable to get them..waiting months in agony!

    My nurse specialist just held a teaching class for nurses in East Angelia..she is the leed drain specialist in the country. Does more drains than anyone else weekly. Trains the staff, including doctors at Addenbrookes, my hospital and clinic. I'm the one who actually convinced her there was a serious need..speaking about all the patients on this board needing help.

    She and her friend hosted it and it was completely full up.

    It's a start anyway.

    Manny of us, once the tablets stop doing their job never go back on spiro or fueroside.

    Wishing you the best!

    Prior to my first tx they would drain up to 21 liters every three weeks. Theni started going in every ten days for a drain. They were taking around 15 liters each time.

    Now I don't have ascites, but terrible ode,a. I can no longer wear shoes. Only slippers and flip flops.

    They still won't give me water tabs, because my kidneys are so poor. Which is why I'm now back on the list for a liver kidney tx.

    Always advocate for yourself.always.

    I know I'm lucky..I hear people on here, really upset with doctors and nurses.

    I realize that at Addenbrookes I am getting the very best. Must be why they are moving the main heart tx center there, Papworths . Or however you spell it).

    The new center along with the liver tx center will be the go to place in England and in Erope! Already we have patients at Addenbrookes getting treatment from other countries.

    I wish everyone on here could be as blessed a patient as I have been!

    Cheering you on!

    Kimberly

  • Thanks kimberley no trouble before transplant getting a drain as like you I was in weekly getting over 10 litres off. Leeds were the ones who suggested I have a drain so I got it arranged and then cancelled it strange lol I am surprised they give me water tablets as my kidneys always buggered up on them.

    Anyway I hope your call comes soon as hunni will keep my fingers crossed xxx

  • Can i ask you what you mean about the water tablets stopping to work as the one I've now stopped my self not sure if I should but read the link about the side affects is spirolactone I'm just taking the furosimide for the last few days but I've noticed in the past that when I stop taking them I pass more water than sometimes when on them which is confusing I'm on a dose of 150mg and 40mg furosimide thanks bri xx

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