Creeping Creatinine

[Thelma]

Please please please reassure me I'm trying hard not to fear the worst.

Creatinine has been creeping up for about six months. Was around 120 now up to 178. TX in July 2012. I've been in amazing health since early 2014. I've just moved from Manchester to Cornwall. I take advagraf 3mg daily but at night because I can't get into a morning routine with it. My tac levels have been highish for some time and I've had trouble getting anyone in Manchester to listen to me about it. Now I've moved to Cornwall (and the hospital is 40 miles away) NOW they want to start investigating. I've had repeat bloods today and an ultrasound which looked fine.

I'm hoping my increased creatinine and tac levels mean it's tac toxicity and therefore can be dealt with. They're talking biopsies and have mentioned that beyond tac toxicity and a bug of some sort (they'd done virology tests today) it could be rejection. I'm so scared of losing my good health. I am a lone parent and I am now at long last living my dream. I have a wonderful job teaching in a lovely school (I'm full time). I'm able to do stuff with my 5 year old son. I'm busy busy and absolutely filled with joy at the wonder of my lovely life. I can't bear to think of endless sodding tests and That Face they pull when your function declines further, and the prospect of going grey skinned and on dialysis and needing another kidney....

Please please reassure me that a) tac toxicity is a real possibility and solvable, and b) that if it is rejection my life isn't over.

Very stressed and sad and ANGRY WITH MY BODY.

[MidgeMan90]

Hi Thelma,

I have experienced something similar and it is by no means the end of the world.

I had a minor rejection episode a year after transplant, had a couple of biopsies - no major signs of rejection. A virus did turn up though, EBV. Since then it has been a balancing act of medications and the virus. ( I still have low levels of the virus to this day)

Everybody has a different creatinine level, it is all about how you feel and how your body feels. A transplant is no cure after all.

I had a creatinine level of late 80s after transplant, after the episode it kept creeping up and is now stuck between 140-160 and has been there for four years now. Some people might have a level of 70-90, others 180-220. It's all about how you feel and if the kidney is doing the job.

It's all a balancing act really. Put faith in your doctors, ask questions, probe and set your mind at rest best you can. Keep living a healthy lifestyle best you can and try to remain positive and enjoy every moment of the brilliant life you are now living.

I hope you have a good outcome and find resolution

Dan.

[Thelma]

Thank you Dan, that was really helpful.

News is generally encouraging. The hospital phoned me today to reduce my tac dose to 2.5mg instead of 3mg. They're sending up the new pills via courier to my GP tomorrow. I will go back for more bloods in two weeks. I will drink all the water in the taps if it helps!! I'm feeling much more positive and less frightened now.

[MidgeMan90]

Excellent!

Fingers crossed for a good set of bloods in a couple of weeks!

Dan.

[Grey]

Now there is a coincidence, just got back from clinic today and have a similar virus, mine is BK. As I understand it the first signs the saw was my white blood count was very low. \\About 3 weeks ago. Then this last Wednesday my creatine was high, about 250 up from 150 odd so they immediately stopped the MMF (celcept) The reasoning is that this BK virus can and does live in most people for a lifetime, but only breaks out when the immune system is low or suppressed. So the treatment for BK certainly is to reduce MMF and start me on a course of steroids. MMF attacks the bone marrow which in turn reduces the immune system but also reduces the white blood cells that prevent viruses like BK. The steroids on the other hand also are a form of imuno suppressor but also build white blood cells. It becomes a balancing act, why, well because raise the immune system too high and the body will reject the kidney, lower it too much and the BK virus will attack and destroy the kidney as well. It becomes a "tight rope" walk from now on unfortunately. So I await the scan on Monday to eliminate any physical issues like low blood flow through the kidney and or a blockage, then it is definitely the BK doing the damage. Also as you say, I am 5 months post transplant and had lapsed in water down to 2.5 L a day. BIG warning, transplant patients must drink 3 / 3.5 L a day to keep a kidney safe. The less you drink apparently shortens the life overall of the transplant. So you are not alone in this, just another unwanted hic cup that we have to work through. With a bit of luck we will make it, hold thumbs !

[Thelma]

I confess I have returned to my old camel-like ways. If I'm lucky, on a good day, I'll have a cup of coffee and a small bottle of water all day, then some water when I get home. Perhaps 750ml all day? Bad days, forget the water and make it two cups of coffee.

I know, I know. I've never been a big drinker of fluid, ever, and I just can't seem to cope with much. Plus, I'm a teacher, full time, and I can't just nip out for a pee whenever the urge takes me! Not to mention I find the feeling of water sloshing around in me quite nauseating and it gives me stomach ache sometimes.

Happy to pick up sugar/sweetener/chemical free tips.

[Grey]

fact: The post transplantation rates of polyomavirus infection were 18 to 44% for BKV and 30 to 35% for JCV

[AmandaClare]

I find it difficult to drink enough these days. I used to drink gallons of water with meals but just don't want so much any more and it's unpleasant to force it down. Apologies to people on fluid restrictions, I well remember how difficult that is.

As a desk worker it's easier for me to drink at work than at home. The kitchen is nearby and getting up to make one is a relief from sitting still. But I also have the luxury of going to the loo at will!

Whereas at home I'm dashing about and find abandoned drinks all over the house later.

I've started drinking sugar-free squash - one big glass per day. It slips down so much more easily than water. I prefer to minimise artificial sweeteners but decided it was better than getting dry.

Hope they get your creatinine stable, Thumps.

[Thelma]

I've got some bottled water to take to work and will pace myself to get through it. I have also bought a carafe that I have filled for home use. I *should* be able to drink a litre at work and another litre at home. I know it's not the full whack, but it's much better than I have been doing.

[MidgeMan90]

Some really interesting comments cropping up.

I was very vigilant about drinking 3.5l of water a day, mainly because a transplant nurse at the QE in Birmingham scared the s*** outta me claiming it should be closer to 5l!

But recently, especially this year, I have found myself not drinking 2l a day, sometimes less. I better get back on that water grind!

Running a business from home with access to the loo and a tap at will is a big help which I realise I probably take for granted. Like above, there is no way you can just wander out to keep refilling and nipping the loo if you are a teacher.

Time to refill the bottle...

[Thelma]

Hi folks

Just to update, that my tac level was sky high and as the dose of tac has been reduced, my creatinine has come down too.

Glad I read this: I've been camel-like all week. I'll take a 2l bottle of water to work tomorrow and I bloody well will drink it somehow. If you hear about chaos in a classroom in Cornwall, it'll be mine and because I've had 9238432937 wee trips when I should have been teaching!!

[MidgeMan90]

Hi folks

Just to update, that my tac level was sky high and as the dose of tac has been reduced, my creatinine has come down too.

Glad I read this: I've been camel-like all week. I'll take a 2l bottle of water to work tomorrow and I bloody well will drink it somehow. If you hear about chaos in a classroom in Cornwall, it'll be mine and because I've had 9238432937 wee trips when I should have been teaching!!

Small sips and often Thelma! It will surprise you how quickly you get through it.

[rheaybou]

I am very lucky, love water.

But not being able to/feel able to leave a classroom for a bathroom break should be something you look at sorting. I have no issue with drinking 2000,3000ml of fluid a day and could do it in water alone.

Small sips, mixing up what you drink while keeping away from anything with sugar in it is my advice.

[Thelma]

there is no way you can just wander out to keep refilling and nipping the loo if you are a teacher.
บาคาร่า holiday

No. It's a pain. Although I do have a TA quite a lot. I'm still rubbish with water. Cordial might be the answer but I don't want sugar and I won't touch artificial sweetener.

[rheaybou]

How about a slice / big wedge of lemon and lime in a water bottle and filled with crushed ice so as it melts it's nice and cold and you get the citrus taste.