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dialysis and other stuff

PostPosted: Tue Jul 20, 2004 10:46 am
by Mike
Hi everyone,

After having to go to my GP last week I had a blood test and my creatinine had shot up to 621, would I be right in thinking that I would be looking at dialysis once my creatinine was roughly 700 and above? I know that it is dependant on my other results but I am trying to get a rough idea of how long I have got to go!

My creatinine 2 months ago was 524 with my clearance at 17, I have been losing roughly 1% of function a month but from the previous result from 2 months before that I only lost 1%. I have had october in my head as a rough time for the last few months so do you think that would be a realistic estimate?

also my other results were urea 37.2 and a figure which I had never been told before by the renal clinic. I can't remember exactly what it was but it had something to do with my pancreas (sounded something like amulin/amulan??) could anyone advise me if this is anything to worry about as it was quite high according to my gp and he told me I should mention it to the renal unit at my next appointment.

Lastly could anyone here give me some advise on what sorts of food I should be eating so to avoid getting too constipated. I've just got over a very painful case of it last week and I really dont want to go through that again if I can help it. I am on Phosex so obviously phosphate & potassium are an issue.

I would be very grateful for any advice any of you could give me


mike :)

PostPosted: Tue Jul 20, 2004 1:50 pm
by SteveUK
Hi there Mike,

From my experience, doctors tend to decide the point at which you need dialysis by your general well being, but just as importantly, as you mention, other blood results.

Creatinine, as you may or may not know, is a by product of the muscles, made when you use them, so the amount of creatinine in your bloodstream is not only an indicator of kidney function, but also a good indicator for body mass. So your figure of 621 depends a lot wholly on your body mass and the way you feel right now.

I was diagnosed at a very late stage and my creatinine was around 1500, and in all fairness, I felt like crap. I'm not sure about the pancreas thing, but your Urea is pretty high, which would almost match the creatinine figure.

I hope this helps in any way.


PostPosted: Tue Jul 20, 2004 2:13 pm
by Rik
can only agree with Steve ...
its not your numbers they take into account but your general well being too ...

as for diet ... you should be speaking to your renal dietician as to what you should be be looking at reducing ... cutting out etc ... is a good place to read for an explanation for starters ...

you havent said when your next hospital appointment is ... but I assume its soon ... any questions you think of between now and then ... make a note of them and take them with you when you go ... you always kick yourself when you have left for not remembering to ask something relevant!!!

PostPosted: Tue Jul 20, 2004 2:39 pm
by Mike
Hi steve & Rik

I must be the worst when it comes to remembering what I was going to ask at my appointment, must get all this stuff tatooed on my arm or something :wink: . It was mentioned that how I feel would be taken into account and I must be very lucky as I feel generally quite good and I have had pretty much no problems so far just hope it stays that way as I know how badly this disease can affect you as my brother is a kidney patient too.

hope you both are well

Mike :)

PostPosted: Tue Jul 20, 2004 5:50 pm
by JMan
Hi Mike.. differnt units ahve different cutoff's for dialysis.. ANd it DOES depend on other things mentioned, not just creatinine or urea although neither of those are idea in high levels..

As to food.. fruits you can eat include apples,.. and erm.. I think pears.. There aren't that many that you can eat that are low in K.. Oh and the other one that dieticians seem to love.. Tinned prunes (actually they aren't that bad just don't eat too many..) much nicer mae into some sort of crumble with custard though.;)you
The constipation MAY well be a side effect of the meds .. regular high fibre stuff tends to be high in K as you know, so you have to watch out a bit..

As to how long get your doc to sit down with you and your figures and do an 'inverse graph' this gives a 'guestimate' approach to point of dialysis based on your 'results current rate of deterioration


PostPosted: Tue Jul 20, 2004 6:15 pm
by bluemoon
I too was given a limit when I would have to go onto dialisis. Mine was 1000. I must say it was bloody awful. Every two weeks I would go and the createnine had crept up that little bit more. Edventually it tipped the scales and I duly went on dialisis. It may sound weird but after several months it was almost a relief to have it over with. Almost...


PostPosted: Tue Jul 20, 2004 6:20 pm
by nycpetit
I do the apples too..and I also eat small amounts of blueberries ....apples should really do the trick....

my creatine is 6 right now...and I am feeling pretty bloody awful..but it's not high enough yet....where's your creatine level now?


PostPosted: Tue Jul 20, 2004 11:26 pm
by Hal
Hi Mike,

I think you've had advise on diet mainly from the potassium angle.

The Phosex is calcium acetate which should help with your phosphates (but doesn't do anything for potassium). Watch out for things like cheese and lots of dairy products to keep phosphates under control.

As Rik said, write down your questions and take them with. Doctors are often pushy so and so's and in a rush - so force them to answer all of your questions however they try and put you off!!!

Its pretty difficult to work out "how long you have to go". It will depend on how your figures detoriorate (this may speed up or slow down), your unit's policies and how you feel.