Had rug pulled out from under me Just learnt I have stage 2 ckd maybe down to Hydroxy ? Anyone else told this ?
ckd aahhh: Had rug pulled out from under me... - MPN Voice
ckd aahhh
12 Replies
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not easy but try and focus on what you can do to not reach stage 3.
Diet really can alter that. If you can follow strictly for a few months then have another test you may be able to stop downhill path
have you been offered advice on suitable diet ?
warmest wishes to you
in reply to Mostew
Thankyou x
My wife has MF and recently been told she has stage 3 CKD she lost the use of one kidney prior to her Splenectomy and diagnosis of MF. The use of hydroxycarbamide, Anagrelide, omeprazole and BP meds all have an effect on kidney function, which isn't ideal. She has a very low salt diet, which helps. As to just blaming hydroxycarbamide, we might find out next week as she sees the nephrology dept for more tests, though we suspect the omeprazole more so. Hope you find out something soon.
in reply to jointpain
Hope your wife doing okay I am going to take Hunters reply into action, try prevent further damage The Joys eh Have good day you and your Mrs 
I went into Stage 2 CKD briefly. After evlauation, determined I needed to really be more diligent about hydration. As we age our kidneys get weaker and simply need more water to function effectively. increasing hydration, even though i thought I was drinking enough, took the kidney numbers back into the normal range.
You are correct that HU is nephratoxic. This is an intrinsic risk of the medication. If your numbers are consistent sliding into CKD, that could be an indication that you are HU-intolerant. The good news is that lowering the dose or discontinuing HU and trying another medication may resolve the problem. This is definitely something to discuss with your MPN care team ASAP. In addition, consultation with a nephrologist is also a good idea.
Please do let us know how you get on.
in reply to hunter5582
Thankyou Hunter Have to admit I dont drink water Will start hydrating more today x
Hello Hunter5582 - Were you diagnosed from ultrasound or eGFR metrics, or both ? I am curious. And congrats to reverse the condition. Kudos to you !
My hematologist noted that eGFR and several other kidney function numbers were off. He referred my to a nephrologist for assessment. She did more labs and ordered the ultrasound. There were no significant findings. Just the fact that our kidneys get weaker as we age and just need more water. Treatment plan = drink more water. the conscious effort to ensure 64oz every day brough all numbers back within normal limits.
My provider recently changed the reference for eGFR. It used to distinguish African American from others. They now use a single number which magically raised my eGFR. Does your provider have this distinction?
A related number from which eGFR is calculated is creatinine.
Have not seen that yet
Hydration is important for everyone but especially important when you have a MPN. It is even more important when you take a medications that are nephrotoxic. I target 64oz of water/day plus whatever coffee/tea I may drink,
hope you find the kidney numbers dropping soon.
My boyfriend is a diabetic and has stage three kidney disease. He’s had it at that stage many years. He drinks a lot of water every day, has fruit salad for dinner almost every night and walks 10,000 steps five days a week. He asked his doctor what the best foods are to eat with kidney disease. You should do the same.
