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Creatinine levels post TX

PostPosted: Fri Jul 27, 2012 12:40 am
by dirverd
I've been stable post TX for around 10 weeks now (creatnine between 105/ 115)

My latest blood test showed creatinine of 127. With a urea of 7.

A week ago they lowered my MMF for 4x day to 2x, because some bacteria showed up in bloods. Could this cause it?

Is it normal for bloods to go up and down, early on? I'm aware that 127 isn't a major change but has anyone else experienced this?

The clinic called me today and said come in next week some time. To have another.

I'm guessing this is nothing to worry about, but I'm just looking for some reassurance really. As I've just really started to get back to a normal life.


Re: Creatinine levels post TX

PostPosted: Fri Jul 27, 2012 8:17 am
by Thumps
dirverd wrote:Is it normal for bloods to go up and down, early on?

In a word, yes. In the weeks and months immediately after Tx, your team will be adjusting your drugs quite a bit, bringing them down from the initial post-op onslaught to (what I would call) "maintenance" levels.

If you look around your neph's office next time you're in, you might see a chart on the wall talking about advised dosages over time, and possibly another talking about dosages against body weight. Every individual patient is different: how they tolerate the drugs, how much they need, which ones they take vs what/how much they eat, activity level, job, etc. so there's a bit of a period of adjustment which is why we have to attend so frequently til they (and we!) establish what "normal" is for you and get a regular baseline level for your creatinine and so on.

It's also worth bearing in mind that your fluid consumption will have an impact on your test results; make sure you're properly hydrated to get an accurate reading (being dehydrated makes cret. and urea higher).

In the end it's not the individual readings that matter, but what the trend is. You may well find that next week and the week after your cret is back down to 110, 120 or so, in which case all good. If it continues to trend upwards, they'll want to adjust things more and/or do some further tests to check all is well.

I found the constant attention from the team quite reassuring early on :lol: Going from weekly to monthly to three-monthly appointments after a couple of years was quite scary!

Hope that helps - just make sure you ask as many questions as you want and stay informed. Good luck! :)

Re: Creatinine levels post TX

PostPosted: Fri Jul 27, 2012 1:36 pm
by dirverd
I've just spoken to the clinic and they said when the weather gets hot it often happens. You get a little dehydrated and your Creatinine goes up. They reckon it'll be fine if, like you say, I need to drink more when it gets hot.

They said they've had to call back quite a few people this week. It happens every summer.

Get another blood test on Monday anyway to be sure.

If nothing else this minor blip helps remind me I'm not cured. I just have a very good treatment option.


Re: Creatinine levels post TX

PostPosted: Sat Jul 28, 2012 9:16 am
by Kipper
I can't stress enough the importance of hydration, my creat went through the roof immediately post tx and they wanted to biopsy. I said lets give it 24 hours I think I might be dehydrated - I was too much coffee.

I make a habit of drinking a galss of water when I get up and another before I go to bed, it's a safety measure.
Another point to make I discovered when talking to my neph is that each kidney has it's own native creat level so there is no such thing as a good level, it varies from kidney to kindey

Re: Creatinine levels post TX

PostPosted: Sat Jul 28, 2012 6:37 pm
by dirverd
Good idea. I normally drink a pint (of water!) during the night.

But I'll change that to one when I go to bed. And one when I get up during this extra hot weather.

Thanks again.

Re: Creatinine levels post TX

PostPosted: Sat Jul 28, 2012 10:24 pm
by Jonny B

Re: Creatinine levels post TX

PostPosted: Sun Jul 29, 2012 6:20 am
by Kipper
Johnny B - I think most people know that drinking an excessive amount of water in a short space of time can be dangerous. It's what killed Leah Betts and not ecstasy as is widely thought, although it's fair to conclude she would not have drank so much had she not taken the drug. The body modulates water consumption through thirst as it does food through hunger, you can over eat and you'll wish you hadn't likewise you will know if you have over consumed water.

Keith's consumption is higher than normal though clearly it works for him and spread throughout the day it's not dangerous, 2-3 litres daily is closer to the norm. I just didn't want anyone reading your link and not drinking enough water due to concern that it is dangerous.

I take the middle ground and ensure that most of my water has been fermented prior to consumption.
I avoid fad diets and am following the well regarded vodka diet, it's going really well I lost 3 days last week - that's a joke BTW in case some eejit thinks there is really a vodka diet.

Re: Creatinine levels post TX

PostPosted: Sun Jul 29, 2012 8:15 am
by Thumps
Indeed - hydration is very important, but if I drank at the levels Keith did I'd be in real trouble and sloshing my way round the house :lol: 2litres of fluid a day is fine for me.

Re: Creatinine levels post TX

PostPosted: Sun Jul 29, 2012 8:21 am
by rheaybou
Even post TX the constany worry doesnt end by the sound of things.
I thought it would be a move away from the daily dialysis worry

Re: Creatinine levels post TX

PostPosted: Sun Jul 29, 2012 2:57 pm
by AmandaClare
Richard, a transplant is less of a cause for worry once it settles down. In the first weeks and months your bloods are being checked frequently, your medication is being adjusted, inevitably you sometimes get results that aren't so good and more follow-up is needed. With luck it gradually drops into the background of your life. xx

Re: Creatinine levels post TX

PostPosted: Sun Jul 29, 2012 7:16 pm
by rheaybou
Amanda, Guess i will have to deal with that once I get to that stage. How long is a settling in period on average 3,6,12 months?

Re: Creatinine levels post TX

PostPosted: Mon Jul 30, 2012 2:04 pm
by dirverd
Just got the news back from the clinic, my creatinine is now back within range 117.

I almost find it more worrying since I've had the Op. On dialysis I knew it was always going to be bad.

Now the fear of losing it is still quite over whelming.

But each day it's slowly getting easier to worry less about it as I feel so much better. Plus, I'll soon be out of the critical '3 month window' the Drs talk about at the clinic.

While I like the idea of just forgetting about it, I think a healthy concern is a good thing. It helps spur me on to keep fit and look after it. And it reminds me how lucky I am.


Re: Creatinine levels post TX

PostPosted: Mon Jul 30, 2012 3:29 pm
by lainiepop
Hi dirverd, glad to see your creatinine dropped back down, im 9weeks post tx and know how u feel, when my gfr was 8-10 creatinine of 450-500 i didn't worry nearly as much as i do now! How often are u having bloods now? My clinic says they do them 2x weekly til 3 mths, but they said if all ok this week then will drop to once a week next week. I worry bout every result, even tho creatinine has been stable for last 3 weeks, i keep thinking next blood test will show something up...! lol

I think creatinine can be bit bouncy first few weeks after transplant, when i was discharged from hospital on day 8 it was 73, (i am a small woman!) then day 13 up to 103, they freaked me out, admitted me and started talking bout biopsies!! I think this is why im overworried now all the time! Turns out i had a blood and urine infection, 2 days later after taking the right antibiotics it came down to 92, then 89 then next few weeks randomly jumped between 70-95 and last 3 weeks been in the 70s, but i worry bout it jumping up and them freaking, they freaked friday bout cmv cos i have a cough, but bloods showed creatinine stable and wbc normal.

Ive been drinking more in the heat, plus i have a cough i caught off my daughter which is making my throat dry, so im more thirsty than normal which helps. I drank 2 litres a day b4 tx anyway (i wasnt on dialysis) so now am drinking bout 3.5, or 4.5 in the heat. You will know if u drink too much as your bloods will come back with low sodium, this happened to me a couple times when i drank tons as i had a uti, sodium levels dipped right down, was told to eat salty crisps and not drink so much lol.

Re: Creatinine levels post TX

PostPosted: Mon Jul 30, 2012 8:13 pm
by dirverd
Iainiepop, I'm down to two weeks in between visits, it was just this tiny blip that they wanted to double check.

The last Dr I saw said I should be able to go down to once a month soon.

I think the main reason for my dehydration is starting to exercise again and it's been boiling recently.

They did advise me to drink a lot, but also, as in sport, you can't just drink water. It should be a variety of fluids.

Milk, juice, tea, squash. Keep it varied.

Glad to hear yours is working well, too.

Re: Creatinine levels post TX

PostPosted: Sun Feb 05, 2017 12:33 pm
by Sadz
Hi guys
My first time on here.. I'll be post transplant 3 months in a few weeks .. iv not been feeling great few weeks
Doing my best to drink loads my last unrie showed bacteria but didn't grow anything but my Creatnine jumped close to 100
Do I need to be worried I'm generally running 73/83 . I'm so scared every time I go clinic I hav been doing so well
Up until recently . I'm 2 weekly at clinic now .
My transplant was live transplant through paired exchange with my brother donating to a stranger so the stress is
More .
Also I had deceased donor transplant in 2007 but had many issues with recurrent utis n that failed in 2012
I'm always scared about the uti n something happening to my kidney