Nephrogenic Diabetes Insipidus and CKD

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I have these conditions and see a nephrologist. Latest GFR is 37, but was 42-45. I was admitted into the hospital for a twisted small bowel (wow painful). For 4 days I could not eat or drink and they gave me saline solution. Could these 4 days have harmed my kidneys more? Nephrologist said I took better care of myself than the hospital did. I saw the drop in GFR over 2 weeks. I'm getting another Creatinine clearance and protenia test soon. I may wear a bracelet for the NDI as I need water often and urinate about 5 or more times a night. I've managed this over the years pretty well. I'm 60 now and have always drank water and the bathroom through the night. I was on lithium which created my CKD and NDI. Now I'm off on a different medicine Lamotrigine, which is awesome. Wish I'd gotten off Lithium sooner.

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  • Posted

    I'm certainly no doctor but I do not see how having just saline is a problem.  Hydration is most important for your kidneys.  And  certainly the doctors knew of your conditions and would not have done something that would have caused harm?  Did they give their opinion why your GFR went to 37?  Might have been a normal fluctuation.  Mine changes at times.  Sometimes 40, then I get a 38 or 37, then it may go to 40 again.  The GFR is something that can change easily as it is really nothing more than taking your Creatinine level and applying your age to a formula.  And Creatinine can vary because of not enough liquids, or too much exercise or muscle usage for example.  Not eating or especially drinking for 4 days would surely cause a GFR change.  My kidney doctor always yells at me to not pay attention to a drop or increase unless that pattern continues over 3 consecutive monthly tests.  Your body is not a robot.  It does not run the exact same every day.  It changes based on nutrition, liquids, exercise or lack of, medications, other illnesses.  Lets see what the next test show you.   Let us know.

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  • Posted

    I'm no Dr but my guess is that the problem with gfr going down would be the problem with your small bowel problem. I have seen a lot of people post that their numbers went down after all sorts of ailments including bad colds or a flu. All I can figure is that any stress on the body really takes It's toll on the kidneys. I had a big drop and all I had was a cold/flu. If you have an autoimmune disease it tends to happen easier.

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  • Posted

    Appreciate those responses! CKD is a silent disease with few or no symptoms until the blood tests tell a different story. I"m fortunate to have an optimistic nephrologist. Sometimes worrying is worse than the disease. Google can really mess with you. I'm glad I found this forum and thanks for the good advice. I'll post my numbers after I get them next week. 

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  • Posted

    Hi, Mari

    My creatinine bounces around some which also causes my eGFR to fluctuate. My nephrologist looks for overall trends in my data over time. He has also clearly stated that various issues, low blood pressure, severe colds, kidney infections, etc, can cause changes in my data. After the kidney infection passed my data typically bounces back up again.

    I have been put on saline solution when in the hospital before with Stage IV CKD. So I would be surprised to hear that the saline solution caused any problem for your kidneys.

    Marj

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  • Posted

    Mari, whether the saline or the trauma of surgery reduced your eGFR, you will probably never know.  However, recent news in the press following research by a couple of University Professors

    in the States, has resulted in some questions being raised about using saline solution when a balanced fluid solution would be safer for the kidneys.  I have had saline drips over the years, the most recent one last year but I don’t recall a drop in kidney function as a result.  My function dropped from 38 to 33 at the last test so now sitting on tenterhooks waiting for the results of the latest one.  Am having never-ending UTIs and also have difficult to treat high blood pressure, both deleterious to the kidney (I only have one) as are the antibiotics to treat the infections, so a vicious circle for me.  Lots of good luck wishes that you have just had a blip and you have better news following the next test.

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    • Posted

      I too have just one kidney.  Don't sit on those tenterhooks because of a drop from 38 to 33 one time.  Mine bounces because really eGFR is based on Creatinine.  Creatinine bounces around easily due to so many influences.  Did you ever see the formula for calculating eGFR.  There are places on the web where you can calculate it if you know your Creatinine level.  Basically they ask your age, Creatinine level, male or female.  Then the calculation is made based upon (in my case) the average weight of a 68 year old male and what the usual Creatinine level should be.  It does NOT take into consideration that you may not be the average 68 year old male.  Maybe I am more muscular, which creates more Creatinine.  Maybe I am not the average weight.  Perhaps I am heavier, or lighter.  Even when I had both kidney's my Creatinine sometimes would be .95, then the next test 2 months later it would be 1.1.  This would change your GFR.  So don't go into a panic mode because it dropped.  Also...my Kidney doctor tells me that our eGFR always goes down over our lifespan.  Past mid life it can drop on average 1 per year.  And because we have just one kidney our eGFR will never be in the normal range, because a typical Creatinine level for a person with one kidney will be between 1.7 to 1.9.  All these "norms" you see on google are for people with TWO kidneys.  They do NOT reflect the norms for a person who has one kidney.  We are in stage 3 CKD because we have one kidney.  NOT because that one kidney is necessarily failing.  Your numbers will be different.  If they took out 1/2 your stomach would you eat the same amount?  NO.  If they took out one lung would you breath the same amount of oxygen with each breath?  NO.  So you can't expect "normal" numbers with just one kidney.

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    • Posted

      Mrs O,

      I haven't seen that research. Would you be willing to share the author(s) name with me. I would like to read it.

      Thanks,

      Marj

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  • Posted

    Results from kidney blood/urine tests. Creatinine went from 1.4=37 GFR to 1.32=41 GFR. I think hospital labs differ in blood test results. So, thank you Rick, right on! No protein in urine is a good thing. Everything else, sodium, sugar, potassium and etc. all normal. I was so relieved and on a happy news high all day. 

    The no symptom aspect to kidney disease creates this dependence on blood tests and makes it scary, always questioning what does this or that mean?

    My brother has MPA vasculitis which is very rare, they think from a bug bite in Mexico transferred some sort of weird bacteria. He goes to Mayo Clinic every 3 months after mis diagnosis and a mess of symptoms. Lost feeling in his feet, never quite recovered. Crazy rash, itching and the vasculitis specialist in his hospital completely missed the DX. If she had prescribed steroids it may have avoided the spread. He had a sort of chemo treatment, but his T cells never recovered over a year. He was in the best shape, worked out all the time, great attitude about everything and this happened. Of course, kidney and organ failure is a big concern with vasculitis. Just sharing about serious stuff that happens.

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  • Posted

    Congrats on the results.  I would kill for your numbers.  My last was 1.9, up from 1.76.  Now I'm drinking more, so will see if this reduces them.  But just read another post, I think it was on Medscape, that 1.8 to 1.9 is "normal" for one kidney, for a male.  So your numbers look good!!

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  • Posted

    After blood test results last week, I had my Nephrology appt. today. I have polycystic kidney disease. He can't say if my creatinine/gfr decline was from PKD or lithium. He said "live your life" you are fine and if your creatinine goes from 1.1 to 1.4 to 1.3 to 1.5, it doesn't matter, it's all good. My blood pressure 123/76 and I keep track at home. No blood pressure meds for me. No protein in urine and my weight is good. I exercise and eat well. I see him again in 6 months. 

    Sometimes the worry isn't worth it. He also said labs give different results and if you took a blood test and 10 minutes later took another blood test, you typically have different results, so don't focus so much on the numbers. He did say stay away from ibuprofen. One of his patients took ibuprofen for arthritis pain for 5 years and now needs a new kidney. Also, drink a full glass of water with any medicine and drink water throughout the day. Don't drink 2 liters in the morning then feel you're done.  I love this guy. He'll answer any question. 

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    • Posted

      Lovely to hear your good news, Mari, and what a great sounding consultant.  How reassured you feel after seeing him really comes through in your post - even I felt reassured after reading all his advice!  All the very best.
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