Gutted: Well it's been two years since I... - Early CKD Support

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Gutted

Thirza2
Thirza2

Well it's been two years since I was I'll with ckd

And had a blood test last week for inflammation conditions and bingo my function had dropped from 38 to 24 %

I am so angry I really thought I had got over the worst well it looks like I was wrong waiting for another blood test on tuesday

Feeling very tired / cramps/ itchy skin /

Problems sleeping /metal taste in my mouth

Is there away bk at 24% or is it at the last

Before transplant

10 Replies
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14 days ago on here, Kimhibberd reported an increase in gfr from 12 to 40 so seems possible. This is in reply to Dave who had increased his enormously to 91.

My mum appears to have increased hers completely naturally (as Dave did) albeit from a higher base than yours. I agree with a comment from one person that nephrologists don't really know as we've experienced that.

Thirza2
Thirza2 in reply to userotc

Hi

Thank you for the reply

Can you tell me how you got your gfr up

This is the third time now in Jan it was 38 now its 24 last time they said it was ibuprofen triggerd but not touched inflammatory medication since but they are say what I have is rare so j am baffled but j would try any think to get mine back up so plz can you tell me how

And

thank u inadvance

userotc
userotc in reply to Thirza2

To be fair, it's slightly early for my mum's results to be using as an example as her gfr only increased very slowly for 2 years (36min to 49 max) and the latest of 61 ideally should be repeated or bettered before we get too excited. At least her steady increase before that may be explained by various wellbeing improvements including improved diet (veg etc), weight loss, stress and BP reduction and vitamin D increase via supplemention. She takes no medication at all (formerly a BP tablet). My belief is that wellbeing improvements are the answer but it wont be immediate.

Kimhibberd suggested maybe iron improvement helped but seemed unsure - see healthunlocked.com/early-ck.... You could research all others on this forum by searching on gfr or egfr?

I have CKD due solely to a genetic condition. I'm also a nurse. I have been told since the beginning (2009 diagnosed) that it is chronic and progressive and things like blood pressure control, diet, exercise can help slow progress of disease but not stop it. I am now on the transplant list. My observation as a patient and a nurse is that it affects people differently - some have quick decline, some can take decades - many different factors can influence how it affects you. Your lab values over time may resemble a roller coaster (not large swings but up and down somewhat month to month, year to year). You may be years away from transplant. All this to say, take a deep breath, find a nephrologist you trust and connect with, do some research, take care of the things you can take care of and take the rest one day at a time. There is definitely not enough research on CKD but if there was a way to reverse it I'm sure it would have made front page news (to use an outdated phrase...). I should note that I am not referring to acute kidney disease which can be reversed in many cases.

You report your gfr is mid 20's. On average dialysis and transplant recommendation (if possible) is at a gfr of 15 or below. I think you are saying that you went from 38 to 24 in 2 years. But you also mention some interesting facts. That you currently have some sort of inflammation? That for some period of time you were taking ibuprofen?? Just taking ibuprofen occasionally, normal amounts, for short period, is not likely to damage your kidney. And certainly not so significantly. My doctors tell me Nsaids should be avoided if possible, but taking 2 or 3 days once in a while (every 2 or 3 weeks) is not going to hurt. It takes higher than normal doses, or consistent period of time. But you say you have inflammation (of what???). You take no medications??? No supplements??? Your gfr dropped 14 points in 5 months?? And your doctor says nothing except lets take another test? Apparently even your doctor does not believe this and has therefore ordered another test. The day of your test and the 2 or 3 days before were you hydrated?? Did you take medications of any sort??

Thirza2
Thirza2 in reply to RickHow

Hi

Thank you for replying

My ckd started about 3 years ago I have been fine for the last 2 years

I was at 38 % in Jan 2020 then in june 2020

I had a blood test for inflammation of my joints

All over my body hence that's when they discovered my function had dropped again

And the kidney nurse called me to go for a test today

But in the mean time I can not be treated for the inflammation antil my kidneys are sorted my consultant needs to know more about the condition as my kidney nurse has said what is going on is rare

So got to wIt for consultant to call me

I was at 8% in Oct 2018 now 24% and feel fine. A new normal, I don't walk miles anymore but normal is good now. I have Rheumatoid Arthritis but the AKI caused this. I can't say how but I'm very glad my Nephrologist held back to allow my kidneys to partially recover. I won't go higher and 25% of my kidneys are dead. But I don't eat banana's, grapes, baked beans and do drink a lot of water. i Keep active and have never taken any NSAIDS or Ibrufen either.

Don't ever give up trying. Eat to your labs, and make the adjustments you need. You may be dehydrated, depending on if it is Summer where you live. Ask your doctor if you can take sodium bicarb until the metal taste goes away.

Don't ever give up hope! Instead, see if you can pinpoint what may have made the GFR drop like diet, medications, stress etc and then try to reverse that. Maybe you are not getting enough fluids, etc. There could be any number of reasons. Always try!

Well I was gutted last time

Today j just fell in shock my function has now dropped again last wk was 26% this wk 20%

Got to have a blood test next thursday

If no improvement next step dialysis

They are sending out courier with steriods

For me tomorrow so surpose just waiting game antil next wk 😥

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