Help and advice needed please - sorry this is loooooong!

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Julie

Help and advice needed please - sorry this is loooooong!

Post by Julie »

Firstly, let me start by wishing you all a very happy new year.

And secondly, by asking for any advice/suggestions you can offer.

On Tuesday 30th November, David was rushed into hospital by ambulance with a very bad bout of peritonitis. They discovered it was caused by E. Coli. He had just got over a previous bout of it, albeit not so bad, just a couple of weeks before and had been given the all clear when this second bout hit him.

So he was admitted to the renal unit and they started him straight away on PD fluid bags containing Vancomycin and Gentamycin plus oral anti-biotics as well. He took a few days for it to settle - still had a lot of pain even after 5 days on that regime, which led the doctors to be very concerned about the infection lingering.

Their biggest concern was that apparently the PD tube inside your peritoneal cavity forms a biofilm on it, and despite anti-biotics, some bacteria can "hide" in this biofilm and regrow again causing a re-infection even after appearing to be all clear in the lab.

So, they decided to operate to take out his old PD tube, and put a new one in at the same time on the other side. Which they did on 9th December.

Which meant that in the meantime, he would have to do Haemodialysis while the new PD tube healed in. So, on 13th December, they put a groin line in and gave him 2 hours of haemo. Then the following day they did 3 hours and he crashed halfway through and felt terrible. They brought him a fan!!!! On the Wednesday, (15th Dec) I went to visit him and found him lying in a pool of blood. :(

The heparin he'd been given during the haemo had caused his new PD tube site to bleed, and boy did it bleed. So much so that the whole was of dressings was sodden, and a folded towel he was lying on was sodden right through to the bed and the sheets were soaked! So I kicked up a bit of a fuss and had 3 nurses and 2 doctors at his bedside and played hell with them that this was being allowed to happen and demanded the surgeon was informed.

So they gave him some platelets/clotting factor and 3 units of blood that night because his Hb was so low because of the blood loss. Then he had 4 hours of haemo without heparin.

By now, they had dehydrated him by taking off u/f when he was already fluid depleted. So on 17th December when the doctors came around I played hell with them again about him being dehydrated and being u/f'd when he shouldn't have been having any fluid removed since he wasn't drinking enough as it was and was being sick 3 times a day at least.

So the haemo he had that Friday night was with no heparin, (the bleeding had stopped by now) and no u/f. And they gave him 2 litres of saline back again.

On Monday 20th Dec they sent him for an ultrasound scan and told him he had some fluid around the liver. Despite both me and David asking the doctors for an explanation of that we haven't had anything at all. He also had another session of haemo that day with no heparin and no u/f and then afterwards they removed the groin line ready for him to restart PD.

On 21st Dec they gave him another unit of blood to help get his Hb up. And sent him for an abdominal x-ray to check his bowels were OK and the tube was in position.

On 22nd Dec they sent him for an endoscopy to have a look at his stomach so see if he had ulcers in case that was what was making him nauseous and vomiting all the time. It was all normal apparently. And gave him another unit of blood.

On 23rd Dec, they started him back on APD. And nearly exploded him because the machine went mad and kept pumping in and wouldn't drain. So he spent all day with them trying to drain him off using heparin in the fluid. And that evening they discharged him!!!!!!!!

So he arrived home at about 8.30pm and I met him at the door, and he promptly threw up! Again. :( :(

Then I set up his APD for him and wrapped all the Christmas pressies he's bought but not been able to wrap as he'd been in hospital for over 3 weeks and I went back to my flat to pack my stuff all up too as we were all going up to Nottingham for Christmas. Lauren was already there - I'd taken her up on the 20th to be with her auntie and uncle and cousins.

Christmas Eve morning I went back over to David's and couldn't believe my eyes when I saw how bloody his PD fluid bags were! :( He said the hospital knew it was like that and that was OK!

So, I packed his clothes and loaded up the car and bundled him in and took him up to Nottingham so he was there for Christmas Day with Lauren. And I spent Christmas nursing him, fetching and carrying sick bowls, trying to coax him into eating something and doing his APD set up and clear up. His fluid bags were still very bloody but slightly less so each day.

Well, now, here we are, 3rd January and not a lot else has changed. He has been taking Cyclizine (anti-sicknessmeds) 3 a day for over a month now but they don't seem to help.

He is still unable to eat much, and often is sick either straight afterwards or a couple of hours after eating. He has lost so much weight his trousers are hanging off him - over 2 stone I reckon (28 lbs). But the doctors don't seem able to find the cause or do anything about it.

I rang his neph yesterday and left a message on his answering machine to say that he can't go on like this because he's wasting away. And I am so scared. I feel like I am watching him dying. He hasn't returned the call as yet.

And the sad thing is I don't think he's be a lot better off in hospital either! At least at home he's in his own bed, getting some rest, whereas in hospital he wasn't sleeping at all.

So that's it really. I'm at my wits end, and I just don't know what to do to help him. And he is so fed up of feeling so ill that I can see him every day getting closer to just giving in altogether. The only thing which keeps him hanging in there is Lauren, I know that.

Lots of love to each and every one of you.

Julie
xxx
Hal
Posts: 617
Joined: Wed Apr 21, 2004 9:56 am
Location: Liverpool, UK

Post by Hal »

Hi Julie,

Sorry for all the trouble David and you are going through.

I think it would be a good idea to print out the post you just made and give it to the nephrologist to read. It would probably sum up your feelings and the issues better that you could say face to face to him.

Hope David is feeling better ASAP,

Hal.
Angel
Posts: 790
Joined: Wed Aug 11, 2004 7:11 pm
Location: Sunny Somerset

RE:Help and advice

Post by Angel »

What I think you need to do asap is to try and get him a clinic appt as soon as you possibly can. Something is not right here and he needs to be assessed as to why he is being sick and has bloody fluid. It maybe a settling down process but I was on CAPD in various forms for 17+ years and this is not sounding 'right'.
Failing that maybe if your GP is amenable you could go and see them and get them to ring his NEPH. Some doctors listen to another doctor far more than they listen to patients and relatives.
It could be that David needs a full abdominal CT/MRI or something and I would try and find out bout the fluid round the Liver too as that maybe the key to this.
Having said all that I know how hard it is fighting for your rights within the NHS as it isn't easy and I have had to fight to be seen countless times but please keep plugging away-sometimes making a nuisance of yourself pays dividends.
One other thought does David have care from a PD nurse or Home team? If so maybe worth calling them and saying this is never right and what do they suggest.

Good luck
Mike
Posts: 1594
Joined: Fri Apr 23, 2004 2:47 pm
Location: Mansfield :o)

Post by Mike »

Hi Julie,

I sorry to hear about all the problems you have been having! you haven't had much luck with PD what with all the problems when he had his tube put in the first place.

I have to say that it doesn't take much to get a bloody bag, i had one recently when I first saw the doctor about the hernia and she pushed in back in and the first exchange was pretty red! I phoned them as I was concerned but they said that it on only takes one vessel to make it that bad but I would be concerned after everything that has happened.

Hope david get better soon and you find out what is causing the nausea.

best wishes

Mike
Elaine
Posts: 1704
Joined: Sat Apr 24, 2004 11:06 am
Location: south west

peritonitis p/d probs

Post by Elaine »

Sorry to hear u husband still havin probs. :shock:

Can u ring ward unit directly to speak to community renal nurses, or on call Nephrologist etc?? Problem of ringing sec office etc annswer machines especially weekends & bank hols dont usually get listened to so hence wouldnt be aware of the probs David is having? We contact unit direct have 24 hr access to unit etc, not sure what system u have arranged at your unit etc.

It does sound like u do need to persevere if possible and get David reviewed as soon as possible just to be on 'safe side'. Know only too well it's not a nice situation to be in and u heads probably full of thoughts of what ifs how why etc??, and sure u need some answers. Especially as he has only very recently come out of hospital.

Rachaels peritonitis was masked for few days by antibiotics and returned twice as bad within 4 days after leaving hospital which is why they insisted on starting her on haemo let peritoneal cavity rest etc and remove p/d tube.

Hope any info is useful to u and good luck. :wink:
George
Posts: 133
Joined: Fri Apr 23, 2004 3:13 pm
Location: Wakefield West Yorkshire UK

Post by George »

Sorry to hear that you/David are still having problems with his infection. :( Personally I would demand an urgent appointment at his clinic and as suggested print off your thread to show the problems you have and demostrate how frustrated you are at the seemingly lack of information or response to your concerns. Then ask for an official complaints procedure form, this ususlly gets them doing summersaults to try and please, what is important is David gets the diagnosis right and the promt appropiate treatment.

Good luck and 'Happy New Year'
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