Kidneys post transplant: Hi everyone... - British Liver Trust

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Kidneys post transplant

jojokarak profile image
โ€ข39 Replies

Hi everyone hope your all good ๐Ÿ˜Š

Just wondering if those post have had any major issues with their kidney function, I have had issues before but my GP is really concerned as the last few weeks my function has dropped dramatically he has contacted my transplant hospital and they now want to bring my appointment forward it's just concerning me as there wasn't this much fuss previously !! I only went to the GP because I was sleeping so much and it's led to this, I am due to be going away a week tomorrow as well ...

39 Replies

Hi Jojo , I have a few ongoing problems with my kidneys probably for about a year, kidney function has steadily declined and at the moment is just under 40 % , so a few weeks ago they reduced my tacrolimus and my kidney function improved but my liver function has started playing up so they have upped the tacrolimus again, got my bloods done today so Iโ€™ll wait and see what they are, also I too sleep a lot but yet Iโ€™m constantly tired, take care ๐ŸŒธ๐ŸŒธ

jojokarak profile image
jojokarak in reply to Kate50

Thanks Kate nice to know I am not alone but rubbish for you as well ... I am glad it's not just me who is shattered constantly ... My hubby says if I could talk in my sleep it would be fine as he wouldn't be spending so much talking to the dog ๐Ÿ˜‚

I had kidney problems previous to my liver transplant due to the hospital overdosing me with the antibiotic Gentermicin and had to go on dialysis for 3 months. My kidneys are ok but they keep an eye on them and classed as having CKD. Because of this they took me off Tacrolimus and put me on Sirolimus they use this immunesuppressent usually for kidney transplant patients. I am ok on this and my kidneys eGFR are usually around the lower 50s. EGFR levels are perfect if over 90, no need to worry between 60 to 90 and need to be kept an eye on under 60. They only look into dialysis if about 15 ish or under. Do you know your test results? Hopefully not too bad and might just change you from the tac to the Sirolimus. Hope everything goes ok, stay positive. X๐Ÿ˜Š

jojokarak profile image
jojokarak in reply to dizzime

Hiya and thanks x

They were 60-65 2 weeks ago and are currently 31 having bloods again tomorrow to see ... I keeping everything crossed it resolves itself and my kidneys are just having a grumble lol

dizzime profile image
dizzime in reply to jojokarak

Fingers and tios crossed for you. Good luck x ๐Ÿคž๐Ÿคž๐Ÿคž

Kristian profile image
Kristian in reply to jojokarak

That is a bit of a drop. I am not surprised they called you back early. Hopefully a change to the meds will resolve the issue or that its just a one off downward spike. If it stays around or below 30 then I suspect you may be getting a referral to the renal team for further management.

jojokarak profile image
jojokarak in reply to Kristian

Hiya Hun it's already happened it's dropped further and I have been referred... GP yesterday said my piss full of protein I not got a clue what that means lol

Kristian profile image
Kristian in reply to jojokarak

Sorry to hear that. Doesn't sound great, but hopefully its something they can manage and prevent any further progression.

Kate50 profile image
Kate50 in reply to jojokarak

Good luck with bloods today hope your kidney function has improved a bit ๐Ÿ€

jojokarak profile image
jojokarak in reply to Kate50

Thanks Kate but no such luck x referral to kidney specialist now but thank you

Kate50 profile image
Kate50 in reply to jojokarak

Hi Jojo, as you know Iโ€™m going through a similar thing but not as bad as you, I was referred back to transplant team and they reduced the prograf and my kidney function improved to above 59% but my liver function was off so they have increased the prograf again and kidney function has dropped to 46% that is in 2weeks so I donโ€™t know what the next step will be but the point Iโ€™m trying to make is it can improve if they can change or adjust medication, and also protein in your urine is a sign that the kidneys are not working properly ๐Ÿ˜ข hope they can sort something out for you, look after yourself ๐Ÿ˜˜๐Ÿ˜˜

jojokarak profile image
jojokarak in reply to Kate50

Oh thanks for clearing that up about the protein I couldn't understand why GP kept going on about it lol I got to drop a sample off on Monday for it to be sent to my local hospital..

It's such a balancing act just when you think things are settling and it's boom ... Fingers crossed for both of us that it all settles sooner rather than later x

Kate50 profile image
Kate50 in reply to jojokarak

Thatโ€™s exactly what my consultant said itโ€™s trying to get the balance right, the other option for me is to change my immunosuppressants but then he told me the side effects ... acne, hair growth, gum problems etc ๐Ÿ˜ฑ, hoping to avoid that, well Iโ€™m off shopping with my 13 yr old diva sure it will be fun I just love trailing round girly shops ๐Ÿ™„ take care ๐ŸŒธ

dckimberly profile image
dckimberly in reply to dizzime

Same here! Tac was hurting me, high potassium, they were worried I would have a heart attack! I was in Addenbrookes then. But the sirolimus cut all that. I take fluid pills with it as a side effect is terrible fluid retention in my legs!

That Tac is a real killer! At least for some of us!

Cheering you on!



I imagine that if it was really serious you would have been asked to go in sooner than just bringing clinic forward.

Whatever, I hope its just a blip and nothing for you to worry about. I had a similar situation one year post, had a call on the Thursday to come in to the normal Tuesday clinic. Went in, had bloods repeated, few days later the meds were slightly altered by phone. That was eighteen months ago and since then all has been fine.

In the meantime, easy to say, but try to not be too concerned and wherever you are going a week tomorrow, enjoy yourself.

Jim (& Lucy)


Sorry to hear that you are having problems. You've had enough to contend with.Consultant said I'm not ready for transplant yet but I will definitely need one.

I had a scan on Monday, she did kidneys, liver, pancreas and spleen!! At least they're keeping an eye on me!! I've just been told I've got thrush in my oesophagus!!

sorry to rabbit in when it's you that came in with a problem. Enjoy your holiday, you deserve it. Love and hugs Lynne. Xxxx

LAJ123 profile image
LAJ123 in reply to


You have my sympathy, I had recurrent thrush all the way from diagnosis to transplant, even hospitalised with it for a ten day stretch. Hope they are taking it seriously and treating you well.

Take care,


Hi jojokarak .

I am waiting for a lung transplant and am on a support site for transplant patients. I have read about people whose kidney function drops post transplant, sometimes requiring dialysis. But I also see that for many, the function returns eventually.

How very worrying for you. I am sure your transplant team will be very supportive and help you through this.

Sending warm wishes,

Cas xx ๐ŸŒธ


Iโ€™m glad to say no worried with kidneys but persistent UTIs which are a real nuisance. End up embarrassing myself in public ๐Ÿ˜•

jojokarak profile image
jojokarak in reply to Isabelle2

I have certainly had a few uti's myself this year so I know you're pain x

I have been successfully treated for auto-immune hepatitis, which has cleared up now, but at the same time i developed a mass on the left kidney called a angiomyolipoma.

The doctors are unsure if its related to the liver problems I had.

It's a rollercoaster that's for sure ... I hope you are sorted x

Thanks, you too.

Hi Jojo, not sure what dosage of Prograf your on, but these meds can cause kidney damage. Might be worth mentioning this to the guys up at St James.

jojokarak profile image
jojokarak in reply to

Thanks Richard GP already contacted them they have dropped further x

Sorry to hear you are having problems, hubby hasn't had any kidney issues since they took him off the dialysis machine the day after transplant, but I think that was just to make sure that everything was working as should & prevent blockages. He is 4 months post tx on the 12th, only problem was his potassium was too high so he came of adeport & switched to envarsus

Hope you get it sorted

jojokarak profile image
jojokarak in reply to Adelou

Thank you x

I hope the rest of your husband's recovery is smooth x

Hi JoJo I had problems for a while my medication was changed to Adagra from program and that made a difference.

I hope its that simple for you.

It is a roller coaster.but the liver units are so good at sorting out problems

Good luck next week


Beture47 profile image
Beture47 in reply to Beture47

Sorry prograf

jojokarak profile image
jojokarak in reply to Beture47

Thanks I hope it is as simple but we shall see x


Hi love!

My kidney functions were bad for months after second TX.

They were afraid to use dialysis, so they went for filtering. They still would not wake up! I had been scheduled for a liver kidney TX, but my kidneys were doing better so they said just the liver.

It was not until they tried the new medicine that they did a lot better. But now I have to take fluid pills because that is a side effect. My legs blew up! Lol.

Anyway, it helps, and my liver functions are great now!

Hope this info helps.

Iโ€™m glad they pushed your appointment. Iโ€™m surprised they didnโ€™t want to see you next day!

Good luck sweets, cheering you on, as ever!


jojokarak profile image
jojokarak in reply to dckimberly

Thanks darling I can't wait to get up there today, probably why I am up in the middle of the night lol

Just hoping they don't change my meds but maybe lower them, I have had no problems really on my advagraf so this has come out of the blue well the decline in the last few weeks ...

Liver doing great so that's all that matters ...

How you doing now I am so happy you got your second gift XXX

Hi Jojo, how are you, any news on your kidney function, hope you are keeping well, fingers crossed for you ๐Ÿ˜˜๐Ÿ˜˜

jojokarak profile image
jojokarak in reply to Kate50

Hiya Kate... I been to Leeds transplant hospital yesterday, but they can't do anything until I have seen a kidney consultant . I got home yesterday and I had an appointment for in 2 weeks ..

How are you?

Hi Jojo , Iโ€™m fine latest egfr is 49 not to bad but ggt, alt and alkaline phosphate are up , just received an appointment for the transplant unit for the 10 th of October today so hopefully find out more then, but I kinda feel ok how are you feeling ๐ŸŒธ๐ŸŒธ

Yeah my Kidney function has been poor for a few weeks now!!! I have transplant clinic on Friday

jojokarak profile image
jojokarak in reply to vulnerable

Hope they improve x I have just been told that I will need a kidney transplant in the future


jojokarak profile image
jojokarak in reply to vulnerable

I prefer that than the liver going as my consultant says its an easier job to keep the kidneys going x

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