ckd stage 3 and falling!!

[warney]

I am 50 years of age and have a history of chronic pyelonephritis, having numerous admissions to hospital with sepsis. due it is beleived to having my bladder removed and an ileal conduit.  My conduit was reivsed early last year to make it shorter and the infections have decreased remarkedly. however, my doctor has always been amazed, saying its a miracle, that my kidney function with all the infections remained normal! Now infections have been under control for nearly a year, only mild ones, all of a sudden my kidney function is falling and at an alarming speed. i have dropped, over 4 egfr tests, from 90, 82, 68 now 53 in less than 8 months. so a fall of 37 in only 8 months, 15 of that in only 3 months. . My doctor said it is too early to refer to nephrologist however when i did some research, it is suggested that a fall of greater than 5 in a YEAR indicates early referral. i am already stage 3 and if it keeps falling at the same average that it has been, ie a drop of another 37 in 8 months, I will be in end stage within less than a year! I am scared and dont know what to do here.  The irony is that the declining egfr started after the severe infections were under control, although i do have constant low grade ones. With such a rapid decline, and the underlying problem of an ileal conduit due to bladder removal, surely a referal should be made?

[warney]

I saw my dr again today, ready for this !!!! told her I was really worried about the speed and depth of the drops in egfr. she told me that, gievn my history, a falling egfr was not suprising. HOWEVER, she had misread dates etc and though it was over 8 years!!!! not 8 months OMG, time to change doctors. having siad that when she realised her error, I got an immediate referral to a neph. god knows how long the wait is though, I live int he country, we only have one neph and he visits from syndey once a month only. Tired to call today but receptionist has her rostered day off on Mondays apparently, they said she might be in later today, fingers crossed, too many delays already. oh and PS add peanut butter to the lst of no no's!!! I eat it like an addiction

[warney]

thanks for the advice. during the periods that I had kidney infections, my function would decline, according to egfr tests, but once it had cleared it always repeated and returned to pretty normal, suggesting acute failure. At these times my doctor said it was normal for this to happen and always repeated the test once infection had cleared,  It always returned to normal (only slightly reduced)  after Iv antibiotics. it is only in the last 8 months that it has continually plunged and become chronic kidney disease, ie abnormal egfrs with no infection.  I guess the years of acute failure and infections have finally taken their toll.  Bitter sweet.  As i have no bladder and so an ileal conduit, I have also had, and still do, constant reflux of urine, so should not be suprised of this outcome. I will look more into the kidney diet. I know a lot suggest low protein, but I have been following that for years, mainly due to lack of moeny to buy red meat!!! I only eat red meat once a week, usually mince as cheap, and stopped eggs ages ago when protein started to appear in urine. At this stage it only showss traces of protein, so not too bad I would think. I am still learning about all of this as it all started so suddenly, bit ignorant of treatments still.  i have an appointment tomorrow (monday here) to see a different GP and have printed out the info from the nation kidney foundation that, in my case, strongly suggest referral, fingers crossed. General consensus seems to refer at egfr 40, I am still 10 above that but most then say that if decline is rapid ie more than 5 per year, early referral is essential.  I have read a few posts now of people who say their egfr has gone up, that gives me some hope as all I have read states it doesnt but decline can be slowed.

[lindahand]

I would insist on a referral. Even if it means paying out of pocket. In the meantime follow a kidney diet. It will help slow the decline. It is strange that it is only after the infections the kidney is affected. I would think that during the infections your kidney function would be affected. Very strange.

I hope you can get things worked out. It is very scary I imagine to have such a rapid decline. My decline was 45 points over a two year period and I was freaking out. Thankfully my GFR has gone up about 12 points so thinks are heading in the right direction.

[warney]

thanks so much for the advice. have you seen a neph yet? I knew I would get this in the end but always joked, thinkikng i would be 70 odd and that hey "we all gotta go some way" at 50 it is a shcok to think that it is likely to be 20 years sooner. I knew so little about it and what i have learned is really disturbing. Most sites say early referal should be made if losing more than 5 on egfr per year, mine is nearly 40 and so is yours!

[warney]

thankyou, it is the speed of the fall that has me so scared. I knew that I would end up with renal failure eventually but thought i had years to worry, and so didnt!  Many of the symptoms that i have had for ages I have only just learned are related to CKD. blood in urine which have had for ages but put down to my conduit or utis, small amounts of protein, bruising which I put down to warfarin but inr was stable, tiredness which I put down to anaemia (which i didnt know in itself was related) vitamin D deficiency which I put down to being in hospital too much and, believe it or not, restless legs and itchy legs. coulndt believe it was a symptom of CKD.
My fear is as I said the speed. Every test over last 8 months has dropped big time. i was told that cant get out of stage 3??? ie once the damage was done it was done and, given continual drop would progress. But in the same breath he says that its too early to refer????? Thankfully I already have a fistula graft so wont have that hurdle with dialysis, which is often why they refer early as it can take 6 months to mature for use, but i cant help but wonder if early referal will at least slow the prgress down?  If it drops at the same rate over next 8 months thats ESKD stage 5.  I have already been told that i wouldnt be a candidate for dialysis (this was predicted as eventaul but not this quick) as I have no bladder and this is why my kidneys are buggered (too much reflux from conduit) and as that cant be corrected it would be deemed not very successful.
Perhaps I should see another GP

[WorriedaboutGFR]

Hi, again.  Yes, a referral IS in order according to the National Kidney Disease Education Program (http://www.nkdep.nih.gov/professionals/chronic_kidney_disease.htm#prevention)

They say any patient with an estimated GFR less than 60 should be treated for chronic kidney disease.  They also say, "Early treatment makes a difference."

Like you, I'm scared too because my GFR fell 40 points in only 3 months! I'm symptomatic and it has been hard getting a doctor's attention about this!!  I'm battling  advanced Lyme disease which usually kills dogs infected with it by causing kidney failure!!

Don't let any doctor dissuade you:  They're your kidneys and you are the one who will pay the price for waiting.  Meanwhile, cut your protein intake drastically and avoid high-potassium and high-phosphorus foods.  I've cut my protein intake by 50% or more, hoping to get out of stage III.  

Go to DaVita's website to find food analyzer tool which will tell you the protein, phosphorus, and potassium content of foods.  The website is http://www.davita.com/food-analyzer/

Hang in there - you're not alone!!