I’m so worried

[Cazzy41]

I went to the transplant clinic on Monday morning. To be told my creatinine is on the ride and there was protein in my urine. I am in the process of fighting this BK virus but that keeps rising as well. So my Prednisone has been reduced from 7.5mg to 5mg. I have to have blood tests again in two weeks and depending on those results I may need to have a biopsy. That’s all I have been told so far and my head is all over the place. Any words of advice as all the advice I was given is keep taking my medication and keep myself hydrated.

[Roadrunner1954]

Hi Cazzy

My creatinine was up and down a lot just after transplant. Try not to worry. I’m sure it will settle down. Did they tell you what your creatinine level was. As far as protein in urine. That’s quite common

I am sure if they were really worried they would have you back sooner than a fortnight

Stay strong. Mike

[Cazzy41 in reply to Roadrunner1954]

Hey Mike thanks for your reply. I think my creatinine was around 124. I have the BK virus and they are not sure if this is causing the issues. I understand what you’re saying but everything was doing good until now. The consultant was worried but as he is a new member of the team I really don’t know how to read him if you get what I mean. I’m a single mum and this has put added stress on me at the moment x

[Roadrunner1954 in reply to Cazzy41]

Hi

Creatinine varies a lot. 124 is very good. What is it normally. Mine is 121 just now and they tell me that’s excellent

I was up to 168 earlier after transplant. I’m sure you will be fine.chin up. Mike

[Dna4christ]

Hey Cazzy,

I dont know those numbers here in th US but my creatine used to be perfect (<1.0) then it slowly went on the rise. Tx team tried changing my medications around but it didnt work out. Later, when it was close to a certain threshold of getting on the transplant list again, they ran a biopsy, thinking rejection. Nothing was found and my creatinine went back down and fluctuated until 2 years ago (which would have been my 6th year of transplant). It took awhile for the creatinine to stabilize itself. Its not as perfect as before, a tad higher than the avg (1.3-1.4) but its still great at 1.45-1.55. How long has your transplant been? Hope this helps.

[Cazzy41 in reply to Dna4christ]

My transplant was 15 months ago. Everything was going good until the BL virus became active 9 months post op. My medication has been played with in an attempt to dampen the virus but it does not seem to be working so was told I have to have blood tests again in a fortnight ( 1 week from now) and depending on those results a biopsy may be needed due to the plus of protein in my urine. That is all I have been told so far. So I’m left hanging with no further information as yet x

[Damigi28]

124 is not a bad number. This happened to me and I have had several biopsies and everything was fine. The doctor said creatinine levels change frequently and the virus may have something to do with it. Hold tight and don't panic. Best Wishes to you!

[Cazzy41 in reply to Damigi28]

Thanks Damigi hunny

I go back for more blood tests next Monday and then we kind of move forward from there depending on results. Thank you for making me feel a bit more at ease. Your message was greatly received and appreciated. 👍

[Santaponsa1]

Hi, I'm 4 yrs post op ( live donor) and the past two years have been horrendous with bowel upset and now experiencing problems with my creatine fluctuating. Always had reading around the 80's and 90's which was excellent,now jumping between 124-146 and following same had a biopsy yesterday to see if any any rejection which I'm sincerely hoping not🙏🏻 It is very concerning when your not used to it, however reading other people's feedback its giving me a little piece of mind knowing some people have been experiencing the same problems. I've had slight changes with immune suppressants and at present off them just now for 5 months so a little concerned re time of same. Nephrologist increased my prednisolone to 10mgs per day until above results come back, which I've been told Monday,so here's hoping for good results 🙏🏻 Hope everything has settled down now for you.

Wishing everyone on here A very Happy Christmas 🎄🎅🏻 and A happy healthy New Year 🤗

[Falkenhayn]

Transplanted kidneys will eventually fail, usually after a period of about 10 to 15 years, because of chronic allograft nephropathy, which is a process combining the toxic effects on the graft of the immunosuppressive drugs necessary to keep it alive, plus the damage done to all organs when whey are surgically taken out of one body and put into another, plus the imperfections of the immunosuppressive process. You have to expect a gradual worsening of creatinine results over the years and just hope for the longest graft survival you can get.