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
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dckimberly
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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.
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.
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!
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??!!!! 🙌
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.
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.
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.
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!
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.
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.
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.
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!
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!
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?
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(sorry to be a baby)
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