My Kidney numbers dropped 25 numbers in 10 months

Hi ~ the water question is a big one for me. I am petite, so 64 oz of water per day is a lot. My urology PA told me that 5-6 glasses of water is fine for me but I have found that I feel better & sleep better with 7 glasses per day. My CKD numbers aren't bad enough to snag a slot to see a nephrologist. I'm still on the waiting list (2nd year).

Speaking about GFR’s. I saw three of my doctors today, my primary care, my urologist, my kidney specialist, my kidney doctor says that since my GFR is looking ““ pretty good he can’t help me, and he has to pass me off to the nephrologist at I might not be spelling it, right Basically the urologist. And he saying I can’t say that there’s anything wrong with your kidneys because they seem to be functioning well other than the fact that you have quite a few obstructions from kidney stones and you have a lot of struvite crystals, and there’s really nothing we can do about it except tell you to change your diet and to exercise, which is everything I’ve been here the last two years. Nobody seems to want to understand the situation. How can you tell me my kidneys a good way and I have kidney stones every single day of my life. I’ve had seven surgeries in two years. So he actually asked me if I was able to prove that which I was not happy with a question like that. I said obviously you didn’t do your homework, so why don’t you try calling Stony Brook University, Hospital and Saint Catherine’s of Siena Hospital in Smithtown and ask them for my medical records and that’ll tell you the tale that I’m telling you . Then they’re asking me how I’m managing the pain and I said nobody’s willing to help me with that. My only suggestion they’re giving me now is to go on a methadone clinic, which is off of the table and out of the question because I can I go to somewhere every single day just to get medicine and then in New York we call that liquid handcuffs because then you can travel and you can’t do anything. You’re bound to the clinic that you have to go to every day and they won’t give you medication to bring with you. If you want to go on a vacation or something for more than two or three days you have to earn the trust which takes years from what I understand. I was at the doctors office for over 3 1/2 hours today. I just got done with an hour conversation with my brother showing him all the paperwork. I have a kidney infection I have a urinary track infection I had blood in my urine I mean it just goes on and on and on and I just keep hearing the same thing from these people over and over again and then the kidney doctor tells me you should try to get a second opinion and I was like what a laugh right I go you’re my seventh opinion OK What are you? What are you guys want me to do are you? I’m just gonna die I’m just going to my kidneys are going to fail one night while I’m sleeping. Hopefully if I’m lucky if God has mercy on me I’ll just fade out while I’m sleeping and that’s what I’m praying for I wall that’s not really the way you should look at it I was like this you guys really aren’t giving me any options so that’s what I’m hoping for is Mercy. And I just want to say to you guys as you know, even though I haven’t commented much I am reading his stuff out of that, you know, my heart goes out to all of you. It really does. I am so sorry everybody’s in the situation that they’re in everybody’s in their own unique circumstances and I do understand you know I totally sympathize and if anybody again ever wants to talk, I’m here If you have a want to send me a private message or anything I’m here to talk OK I hope everybody has a good day or week or at least try to try to do something that makes you happy instead of trying to make everybody else happy and I know you all know what I mean . Sincerely Jeffrey.

Same boat but different causes(atypical nephropathy) , at 32-28 range last six months and my good neph is positive . Not sure if she needs to be positive or it’s really like that. Very difficult to prognosticate in this age of internet and science ! 16% chances of kidney failure in 5 years — what does that really mean -?

Well, this is just my opinion now just my opinion to me it means whatever you want it to mean September 11, 2021. I wasn’t gonna live the hour the night the next day that week that month the six months the year they put me then on the two-year clock, which I’m about four months away from and I’m not having what they’re saying you know what I mean like I’m staying positive, I’m doing my exercising I changed my diet drastically and accordingly I’m still having my problems. They can’t figure it out but I refuse to except somebody telling me putting a actual time clock on my life. I refuse it. I refuse that answer. OK. I mean if they had what they want. They were just telling my mother that I should be in hospice hospice. That’s what they keep saying hospice hospice hospice will make you comfortable because that’s where they give me the pain medication. They don’t wanna prescribe me pain medication… I’m in the hospital. See you know it. I’ll deal with it because I’m still doing stuff. I’m working when I can. I’m going to the gym when I can I’m traveling I have things to look forward to to keep me going . And I have a great family. I’m very fortunate and I’m very blessed for that. I hope you do as well. Know that you have somebody here if you need to talk. Just you know a private message me if you want to speak privately, and I’m here to talk I’m not on here every day we all have our lives and stuff like that but I do go through the notifications and I do read stuff and you know when I can chime in a little bit with something that I feel will help I will but my advice to you is to not let anyone dictate a timeline for your life you do that. I hope I helped. Sincerely, Jeffrey .

I’m hoping this is a public comment and not a private one. I was wondering if some of you can attach photos to your profiles because I just kind a like wanna put you know the face with the painting. I’m kind of trying to get a feel, and the full picture of what’s going on with everyone. I try to post pics as much as I can as everyone sees. Hopefully if I’m doing it right. Lol thank you And feel well

Ditching those cigarettes sounds like just about the best step you could take:
https://www.davita.com/education/ckd-life/lifestyle-changes/smoking-and-chronic-kidney-disease#:~:text=Here%20are%20some%20of%20the%20possible%20ways%20smoking,renal%20arteries%207%20Accelerates%20loss%20of%20kidney%20function

I hope everyone will get a GFR through Cystatin C rather than creatinine. It is more accurate!