Ascites again& still. And Creatin at 240 - British Liver Trust

British Liver Trust

38,205 membersβ€’18,736 posts

Ascites again& still. And Creatin at 240

dckimberly profile image
dckimberly
β€’24 Replies

hullo all!

So, and forgive my wretched spelling.

I had to get drained again three weeks ago, as they found substantial fluid in all four quadrants. I need another one again. My feet are also swelling again. It's been about 7 months post transplant. The consultant says this is only found in 5% of patients at this late stage. Although my pressure levels were taken and found to be fine, I think Ill have to be readmitted again in next few days, because they want to do more and my creatin is so high. I'm waiting for them to call about a bed now. I knew there was issues with my kidneys, I can tell when using the loo.

I guess, my wondering is this..has anyone had ascites bad enough to need draining after transplant? this far out? if so, what were the findings?

And my creatin levels. I know that 230 240 250 etc is very high. I guzzle water like theres no tomorrow. I'm also still on blood thinners..injections..its been 3 months..I wish they would switch me to the pills. The injections hurt! :( (sorry to be a baby)

Another thing, I'm just so very tired. I am just falling asleep like every 3 or 4 hours..this cant be normal.

Thoughts anyone? and thank you so very much, in advance!

kimberly

Written by
dckimberly profile image
dckimberly
To view profiles and participate in discussions please or .
Read more about...
24 Replies
β€’
Jahida profile image
Jahida

Kimberly, so sorry to hear about your problems. I really hope someone could shed some light on it and hopefully the specialists can find what the problem is.

Wishing you lots of health!

dckimberly profile image
dckimberlyβ€’ in reply toJahida

thanks so much!

They say if its my outgoing pressures with the blood leaving the liver, then they can fix it with medication no problem. My only concern there is that when they did the veenogram and biopsy a couple of months ago, they found clots in the portal-vein (thus the ongoing blood thinning injections) but that the pressures were all fine. So, if they still are, then I just don't have a clue as to what is happening!

lolol..I gotta laugh, at this point. But I also have to remember to be grateful..it's important for my mental health!

Cheers!

xxxxx

Hi Kimberley, I'm so sorry to hear that you're poorly again. I am now 4 months post transplant and have days when I feel awful and spend most of the day in bed, other days, my energy levels are better. I was on Urso for a few weeks as I may need a bile stent, that medication made me feel worse than before the transplant. I don't have Ascites but I still itch terribly.

Apparently the Prograf is harming my kidneys as my Creatinine is currently about 170 with EGFR reading 36. The EGFR is an indication of kidney health, 30 or below is when we begin to get toxicity and below 15 is when it really struggles.

I feel like I'm telling you what you already know as your knowledge is far better than mine.

I'm at my clinic tomorrow for the usual tests and am Mri scan so I'm hoping they will reduce the Prograf. The only blood thinner I'm taking is Aspirin. I drink about 2-3 litres of water a day and most of the night at the toilet.

I don't think I've been much help but I hope you get sorted out soon, it's no fun being all the time.

Mike XX

dckimberly profile image
dckimberlyβ€’ in reply to

Thanks Mike.

and yeah, they lowered my Adaport considerably before, because of the creatin levels. I'm only on 1.5 mil twice per day. They have said I'm super sensitive to the imuno's , but still!

They're waiting for the hematologist to call back right now, before they do the pressures. I hope they can sort it!

cheering you on!

XXXX

White-feather profile image
White-feather

Kimberley. 🌟

It is upsetting to hear of your down hill health after transplant. 😘 You are a lovely person who is positive and calm. You give sound advise to others. 5% of patients? Thats really unfortunate 😀

Now it is our turn to help you??!!!! πŸ™Œ

Bless you, for doing so well so far 🌼 I am not on 'the list' but who knows what will happen?!

I do, in fact, I know there are people, Jahida who is thinking of you will be a good support, I'm sure.

You seem so aware of your body. Trust yourself. πŸ˜‰

Take care and lean on us. We here. πŸ‘

dckimberly profile image
dckimberlyβ€’ in reply toWhite-feather

thanks so much White Feather! :)

xxx

liveronmymind profile image
liveronmymind

I agree,Kimberley is a very lovely person and an angel. Kimberley, I wish I knew something about this but I don't. I wish I could give you advice and be positive and supportive as you were to me in my grief. Your goodness shines out through your posts and I REALLY REALLY appreciated ALL the advice and things you said to me. Please get well soon, thats all I can say. Also I know ascites can is linked to how much albumin the liver synthesises, but thats all i know .

Dear sweet fun Kimberley I hope you're back on track and feeling better as soon as possible.

Hugs and kissses xxxx

dckimberly profile image
dckimberlyβ€’ in reply toliveronmymind

aww, thanks love!

Thinking of you and hope all is well on your end too.

XXXX

White-feather profile image
White-featherβ€’ in reply toliveronmymind

Hear, hear!!!!!! πŸ˜€πŸ˜€πŸ˜€πŸ˜€πŸ˜€πŸ˜€πŸ˜€πŸ˜€πŸ˜€πŸ˜€

Catfishjumpin profile image
Catfishjumpin

I am sorry I have no experience but I want to say to you I am very sorry you are in such distress right now, I hope soon your health levels off evenly for you. It sounds very difficult right now. Is it ok for you to drink so much water? I have never been transplated so I do not know much about it and post transplant. Good luck. You sound strong and mentally even.

Jahida profile image
Jahidaβ€’ in reply toCatfishjumpin

Catfishjumpin when you have kidney issues, water is good. I'm always told to drink at least 3 litre of water after transplant as the anti rejection can affect the kidneys. By drinking water you're making sure the kidney isn't having to work too hard along with the medication. I hope I got it right!

dckimberly profile image
dckimberlyβ€’ in reply toCatfishjumpin

hi there, and thank you. Actually, water has been recommended for the kidneys. But when I say guzzle, I mean no more than a liter per day. I don't drink a lot of fluids to begin with.

xxx

Catfishjumpin profile image
Catfishjumpinβ€’ in reply todckimberly

I do know know but perhaps it would help to drink more. Thats not much. I barely make it on 2, I long to drink 3 quarts a day πŸ˜€

dckimberly profile image
dckimberlyβ€’ in reply toCatfishjumpin

its a good idea, and if I could, I would..but i start to feel so uncomfortable, and then that's when the fluid comes back and I need to get drained.

I swear, Catfish..I feel like I'm damned if I do and damned if I don't..you know? ( forgive language please..just nothing else seemed to fit!)

cheering you!

XXX

Catfishjumpin profile image
Catfishjumpinβ€’ in reply todckimberly

Yes I thought it sounded as if you are struggling with two opposing issues, you need the water for your kidneys but it causes problems with ascities. I hear you, its tough when we are stuck in the area where it seems that if something works for one thing only to wreck havoc on another. Its a real Catch 22. I hope you get some relief soon. Bless you.

dckimberly profile image
dckimberlyβ€’ in reply toCatfishjumpin

thanks again so much for your support!

XXX

RodeoJoe profile image
RodeoJoeβ€’ in reply todckimberly

Yes I do feel for you. To come out the other side and still have ascities doesn't seem fair. How is this still happening? It's my understanding that it's to do with blood flow through the liver, a new liver should have dealt with that.

Fluid, good for the kidneys but bad for the ascities.

thewayforward profile image
thewayforward

Dear Kimberly!

Get better soon please!

Big hug

dckimberly profile image
dckimberlyβ€’ in reply tothewayforward

Theway,

thanks, and I sure am trying, I promise!

XXX

White-feather profile image
White-featherβ€’ in reply todckimberly

How have things been today, Kimberley? πŸ’™

Wishing you well 😘

πŸ€

pear-shaped profile image
pear-shaped

Dear Kimberley,

This is awful! Your consultants really do need to investigate what is going on... I'm afraid 5% is not a good enough explanation! You must ask them for a clear plan...

When are they planning to test the pressure again? And the kidneys are not unhappy for no reason - so they need to thoroughly investigate - you are so lovely and have given all on here a huge positivity boost - please do push for answers and don't let them take advantage of your lovely nature!

Sending you lots and lots of hugs...

Pear

dckimberly profile image
dckimberlyβ€’ in reply topear-shaped

Hugs you, pear...you absolute doll! Thank you for you continuing support! XXXX

I agree with you. I think their a bit baffled also. But I do know they are concerned. Right now I'm waiting for the hematologist to clear me from his end, then I'll get pressures checked after that, and whatever other procedures they'll do.

I had a bone marrow biopsy which was all clear, but they sent away for more extensive tests. So, just hoping they return soon.

I hope you and yours are doing well!lsummer is upon us, and I'm so glad. The garden is growing,birds are chirping and all the greenery is heavenly! This is my third summer in a little village in Essex and it's pure heaven!

Hugs you!

xxxxxx

Kimberly

briccolone profile image
briccolone

My thoughts are you're going through the bloody mill and don't deserve it...cheering you on . k

dckimberly profile image
dckimberlyβ€’ in reply tobriccolone

Briccolone,

thank you! I'm so grateful for my new liver, and I'm trying very hard not to poor me it.

I think others on here have suffered after transplant far worse than me. So, I try to keep that in my head..but to be honest, it can be hard sometimes, you know?

Thanks for your kind words!

XXXX

kimberly

Not what you're looking for?

You may also like...

Back in the saddle again

And by that, I mean the hospital. I was admitted last Friday for high creatin, I had been moving...
dckimberly profile image
β€’

ascites - Google terrifying me again

quick overview of me ... heavy drinker for as.long as can remember, collapsed start of December...
Chris-harris profile image
β€’

Newly transplanted due to acute liver failure

Hello all. Hope you are well. I'm a 34 yr old female who fell ill with vomiting, loss of appetite...
Jahida profile image
β€’

Diagnosis, or partial one

First, thank you everyone for your support while in hospital. I don't know what I would do at this...
dckimberly profile image
β€’

On the list.... again or still?

Well for those that don’t know, I was listed at Kings back in March this year. I have since moved...
Identity75 profile image
β€’

Moderation team

See all

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.