Chronic kidney disease & haven't been told

Hello all

I had my recent clinic appointment and it hasn't been great. I had an ultrasound which showed coarse echo texture and slight irregular liver transplant. Also they've found a small lesion. I will be having a CT scan in April I think.

What surprised me is that the letter they sent to GP had 'chronic kidney disease stage 3' as a diagnosis too. It would have been nice if they had told me this.

My Tacrolimus level was 9 this time and I'm still confused why they are not changing prograf to something more gentle that will not affect the kidneys further. My tacrolimus level have been 7+ for months now but they just do not speak about minimising it. I saw a consultant last year and he was adamant to decrease it before it damaged my kidneys. He even wrote on the letter to try to decrease slowly but each consultant says different things.

Anyway felt like a rant so I came on here!

Any experiences would be great to hear about.


2 Replies

  • No experience to offer you but sorry to hear things are not so good. Hope you get the scan and more info soon

  • Dear Jahida,

    The initial consultant was absolutely right to dose reduce. My husbands kidney level was very high so they switched from tacrolimus see if it was that adaport causing it... The levels went down quickly so it was definitely the tacrolimus causing it. So he is on one and a half mg.per day and his tac levels are about 3. They will see about switching once all these wounds heal from the recent hernia repair.

    You must demand they take the dose down and 7 is far too high...


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