stage 4 kidney disease

[VirWlf]

My spouse has stage 4 kidney disease with a gfr of 15. The gfr improves to 20 when she gets IV hydration in a hospital setting. Does anyone get IV hydration at home ?

Thank you,

EP

[Blackknight1989]

I’ve been stage 4 since ‘96 sub 28 eGFR since ‘96. Last 5 years eGFR has averaged about 20 with a low reading twice of 16 and a high of 26 once…Since ‘96 I have always carried with me one of those 128 oz cups you get a quick marts…if he will do that and always have it beside him he can hydrate as well as the IV on a daily basis…however, I’d talk everything over with your trusted physician first…too much fluid can be just as damaging and dangerous as too little. BTW, if you have your bloodwork done for an eGFR measurement at say 2:00 today and again at say 2:10 today the readings will be like 17 and then 21 or similar…the labs can be up to 40% inaccurate and certainly fluctuating at our level hy 5/6 points…probably much less to do with hydration than the accuracy of the test, as long as he is getting “adequate” hydration daily which at our age he should be able to gage well enough by his bathroom usage…best of luck to you and your partner!

[VirWlf in reply to Blackknight1989]

Thank you so much for your post. Do you get IV hydration at home? Also when you say "adequate" hydration can you be more specific ? How much? Water only? I am writing to you because my spouse has CKD stage 4 and our goal is to keep her grf stable, it is 15 but was 20 for over a year, but we cannot seem to get there again.

[Blackknight1989 in reply to VirWlf]

In my opinion “adequate” hydration is when you can generally tell you are hydrated by frequency of bathroom use and color of urine…Yes water only…since 2006 I consume only water…I probably can’t find a medical study detailing this is a medical fact but IMHO those of use with eGFR sub 20 should only drink water (I have 1 cup of coffee in the AM) but only water…anything else and even with the coffee I am fighting against myself because of the diuretic effect of the caffeine in the coffee…so I can’t tell you an actual amount but only encourage you that most of us know (again by frequency and color of urine) whether we are adequately hydrated.

You won’t keep eGFR stable…you could run back to back to back tests and it’ll be different (most likely every time…my GP is in the VA clinic but my nephrologist and rheumatologist are with a local hospital group…there are > 35 tests for eGFR with 5 being most prevalent. The VA uses the 2009 CKD-EPI creatine equation but this is the recommended by the NKF and ASN:

We recommend national efforts to facilitate increased, routine, and timely use of cystatin C, especially to confirm estimated GFR in adults who are at risk for or have chronic kidney disease, because combining filtration markers (creatinine and cystatin C) is more accurate and would support better clinical decisions than either marker alone. If ongoing evidence supports acceptable performance, the CKD-EPI eGFR-cystatin C (eGFRcys) and eGFR creatinine-cystatin C (eGFRcr-cys_R) refit without the race variables should be adopted to provide another first-line test, in addition to confirmatory testing.

So my reading from the VA has been 17 (12/20) 17 (7/21) 23 (3/22) and from my specialist offices at Baptist Health 23 (5/23) and 29 (10/23). So they are always close to each other but every reading from the VA had been 17 until 10/23…Baptist fluctuated more as it is different every time…I’ve had 4 test since 12/20 there and it’s between 21-29.

Here is a link to the study:

pubmed.ncbi.nlm.nih.gov/345...

[VirWlf]

Thank you so much for your reply. Unfortunately my person does not like straight water, so we found flavored water and put lots of ice with it. Your post gives me hope. Thank you again.

[Blackknight1989 in reply to VirWlf]

Maybe show her the study? Anyway, the best way to hydrate at stage 4 with eGFR <20 is water only…I’ve lived with sub 25 eGFR for nearly 27 years and since eGFR naturally drops as we age I am averaging sub 20 now…every year at my GP since 12/20 (twice a year so 6 test of 17,17,17,17,17 and 23)…my suggestion is have her read or you read to her all the posts on this thread..dialysis starts at 15. 17 is 2 points away from that, that’s roughly 5 years of normal aging decline of eGFR, so for me probably age 62. In our condition we are already 300% more likely to have a “significant CVD event” (medical code for a major life-altering heart attack or stroke) most likely resulting in complete disability if not death…those facts are in the link I provided…this isn’t just an inconvenience our stage 4 CVD it is behavioral altering or at least SHOULD be….i hope her attitude isn’t that cavalier but if so, perhaps you should consider a serious talk with her and the doctor…If her hydration is causing issues or at least enough concern for you to ask about it here, than it’s a problem that needs to be addressed…if we were stage 3A or even 3B not near the concern but at our level of disease with dialysis not just a possibility but a probability AND the absolute terrible statistical chance of surviving the first 6 months of dialysis it should be avoided at all costs, or at least that my opinion…thus, I believe she should be drinking water (plain). It’s much more important to those of us with stage 4 than we think…just my opinion of course and I am not trying to tell you or her what to do just my understanding of a critical issue with a direct impact (potentially) on her chances to live a “normal” lifespan…best of luck to you and your significant other!

[VirWlf]

Thank you for your email. At 87, her ways are hard to change, but I will try. She gets lots of ice in flavored water that is 98 % plain water apparently. I agree with you re plain water. We are seeing a new nephrologist soon. Maybe he could convince her re plain water. The whole thing is a nightmare.