Chronic kidney disease stage 1 - my son

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Chronic kidney disease stage 1 - my son

Postby musiclover » Thu Jul 14, 2016 8:15 am

Hi everyone, I have just joined these forums in the hope that someone can offer me some advice. My son, 24, is currently going through treatment for leukaemia and also had two cardiac ablations this year. When he went to the pre-op for his ablation, he was asked to supply a copy of his medical history from his GP, which he did. It listed all his medical problems and treatments, all of which we knew about, except for one. It stated that in 2010, he had been diagnosed with stage 1 chronic kidney disease, but no one ever told us! Up until now there has been nothing to indicate that his kidneys have been malfunctioning, but during the last few weeks when he has been visiting the hospital for his chemo, they have been taking weekly bloods because his creatinine level is not right and they want to keep an eye on his renal function. As this has been six years ago, and no one thought to tell us, I am now anxious that it might have progressed to stage 2. I am not sure what to do, as my son is the kind of person who always plays things down, and it's hard to tell whether he is thinking the same as me. I don't want to mention it to him as he has enough to deal with, but I know his doctor will not discuss it with me without his consent or him being with me. I am at a loss at the moment, and it is worrying me sick, so any advice you could give me would be very gratefully received. Thank you. :(
musiclover
 
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Re: Chronic kidney disease stage 1 - my son

Postby wagolynn » Thu Jul 14, 2016 2:39 pm

Hello musiclover,

As a parent I sympathise with you, looking at the situation from the outside, I can say, it would not have made any difference if you had known six years ago.

He may well have been told by his GP at the time, he was eighteen and would be treated as an adult.
I would assume the cause of kidney failure would have been investigated, and the conclusion was it was untreatable.
If that case, he would have been advised to go away and forget about it.

If it is untreatable, it is difficult to say when medical intervention will become necessary, each individual progresses at their own rate, and can go very long periods without any change.
The usual thing is to have blood test once per year, in the early stages, gradually increasing the frequency of test as the condition progresses. I do not know of any treatment that will delay the progress.
The only thing to be done is to eat healthily, and take some exercise to maintain health in the mean time.

As things progress, the renal team will discuss transplants, and dialysis with him. Dialysis takes over most of the work of the failing kidneys to keep the patient healthy for a transplant but he is a long way from that yet.

He is being looked after, they are monitoring his kidney function now as the chemo can give the kidneys a sever shock.

If you go to the Home page of this website http://www.kidneypatientguide.org.uk/contents.php you will find reliable information about CKD (chronic kidney failure).

This website is more technical but again reliable http://www.edren.org/

I would try and discus it with your son but if he chooses not talk I am afraid pushing him will make the situation worse.
Ironically, he probably does not want to talk to prevent you worrying.
Or it just may be the 'normal' male thing of not wanting to talk about a perceived weakness, I know because I tend to do that.

Best wishes.
wagolynn
 
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