Been a while

[jojokarak]

Hi hope I find everyone as well as can be. I have had an eventful 2 months, I went into MRI (hospital) over 7 weeks ago to have a drain on my stomach, for some reason it wasn't possible to do but I was left with 2 leaking holes in my belly and also H.E. I was kept in for about 10 days then discharged. I was home one night and I didn't sleep my H.E was getting worse, doc was phoned he rang MRI but they refused to take me back, doc had to ring another hospital Salford Royal and explain the situation to them, they agreed to take me in which is a really good job as I don't remember anything after that I woke up days later in HDU my husband and friends said I went really bad, worse they ever seen. Whilst out of it I had blew up with water retention to 129kg. I had kidney damage and also an infection in my stomach. If it wasn't for Salford I don't think I would be typing this they kept me in for 5 and a half weeks until I was back to the best I could be, just hoping Leeds take this episode on board it was scariest one of my life.

[Steve-N]

Hi jojokarak,

I have heard that Salford Royal is one of the best hospitals up here in this area but is the MRI which you mention ... Manchester Royal Infirmary. Manchester Royal is about the worse there is and altogether I have been sent to about eight now.

Thanks, Steve

[Bolly]

Yikes, I was at Salford but then the hepatologist left and I was left with only a gastro to go to in clinic so I asked to be transferred to the MRI which is where I have been now for a couple of years. I have been an in patient at Salford on a ward which was ok but far too hot and the food was crap so I came out dehydrated and constipated. Not been an in patient at MRI but find outpatients ok apart from busy, Radiology is great too.

[jojokarak in reply to Bolly]

Oh I still got my consultant and appointments at MRI but when your in for a stay well that's a different story. And I agree Salford ward was boiling and I think all hospital food is awful that's why I don't eat any of it I have family and friends bring me food in. And I was dehydrated anyway as I was on a 500ml limit of fluid every day

[Bolly]

Interesting to hear. If I need to be an inpatient maybe I will ask to go to Salford. But then who would take care of me? My hepatologist there left and wasnt replaced as far as I know, thats why the MRI do all the clinics now.

[RodeoJoe]

Christ JoJo that sounds horrific. Hang in there, you got on the transplant list didn't you?

I had similar before transplant but not nearly as bad as you've just described. Are you back home now?

Is the HE and water retention any better?

[jojokarak in reply to RodeoJoe]

Not on list yet Leeds want to do more tests. And it was awful I couldn't walk properly or shower on my own and I wasn't comfy until a week ago. Thank God everything under control now and I back at Leeds on 22nd of December so hopefully find out more then x

[RodeoJoe in reply to jojokarak]

Keep pushing to get those tests done.

When I had HE I was properly out of it. Didn't even know my own name or my partners. It was horrific, really thought I was a goner, I was petrified. And the liquid restriction almost drove me insane.

Try and relax for the next couple of weeks.

Really hoping you get this sorted soon.

[RodeoJoe in reply to RodeoJoe]

I was also held back for further tests. I pushed to get them done ASAP.

[dizzime]

That sounds awful-I thought MRI was ok, how could they say they wouldnt take you back in, that is disgraceful. Mind you I had the same kind of treatment at Oldham Hospital but at least they took me infor a bit , mind you It wasnt good, I was then all bloated, my legs were in a terible state and bad HE but they still sent me home???? It was after this I had an appointment with Leeds for outpatients and the next day I had the call to go in for transplant. Even thought the liver I was called in for wasn't right for me they didn't let me out,. I then had a chance for another liver but by then my kidneys were failing so they had to get me back on dialysis to get them right first. Fortunately they then put me in HDU and David (my new liver) came along and saved my life. (3rd time lucky)

Saying all this in hope that at your appoinment at Leeds on 22nd they realise how bad you are getting and keep you in regardless and your new liver will come in for you, Good luck to you and finges crossed all goes well. Keep strong and positive lots of hugs xx