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  • angieskidney
    replied
    Re: Creatinine fluctuation

    Originally posted by dandoon View Post
    Hi all,

    This is my first post and I've had CKD for several years now due to SLE (lupus nephritis) -- I'm 21. I was recently hospitalized because my creatinine level went as high as 9.6 due to non compliance). After receiving pulse steroids and Endoxan, it has now come down to 7.6.
    However, it still puts me at stage 5 and they've fitted me with an AV fistula in prep for dialysis in the future. At this point I do not need it yet because I am mostly asymptomatic.

    I am really confused as to how such a large fluctuation can happen when CKD is progressive. The biopsy I did 10 days ago showed that 65% of kidney tissue is sclerosed.

    By loading me with powerful drugs to control my autoimmune condition, is my nephrologist delaying the inevitable -- i.e. dialysis then a kidney transplant? Or can ESRD be prevented? I am not freaking out, just want to be clear on things.

    Thank you so much.
    Sorry but by that stage ... I would think that dialysis and kidney transplant is inevitable but that the Nephrologist is keeping your kidneys working as long as possible because nothing is as good as working kidneys until you are symptomatic and then dialysis is needed.

    I, however, am not medical staff but speaking from thigns I learned as I go along with my own kidney disease. However, everyone's situation is different. I do not have SLE but I know someone who does. Karen on this site does: http://slelupuskarenguy.com/ and her husband Guy runs the site.

    Leave a comment:


  • dandoon
    replied
    Re: Creatinine fluctuation

    Hi all,

    This is my first post and I've had CKD for several years now due to SLE (lupus nephritis) -- I'm 21. I was recently hospitalized because my creatinine level went as high as 9.6 due to non compliance). After receiving pulse steroids and Endoxan, it has now come down to 7.6.
    However, it still puts me at stage 5 and they've fitted me with an AV fistula in prep for dialysis in the future. At this point I do not need it yet because I am mostly asymptomatic.

    I am really confused as to how such a large fluctuation can happen when CKD is progressive. The biopsy I did 10 days ago showed that 65% of kidney tissue is sclerosed.

    By loading me with powerful drugs to control my autoimmune condition, is my nephrologist delaying the inevitable -- i.e. dialysis then a kidney transplant? Or can ESRD be prevented? I am not freaking out, just want to be clear on things.

    Thank you so much.

    Leave a comment:


  • iro delaney
    replied
    Re: Creatinine fluctuation

    Thank you everyone for replying , I will try my best to control my blood pressure and cholesterol as of now they are in good numbers
    I am hoping my diet is good, its so hard to eat the right things ALL the time

    I am having my next blood work the first week of January and of course I am nervous and scared of what the numbers will be. Like I said my creatinine has been always 1.1 or 1.2 for the last 9 years but the last one about 3 months ago was 1.3 the highest I have had , my nephrologist suggested I drink lots of water and have it checked again in January
    the rest of the blood work came normal and most important there was no protein in the urine
    I am very nervous to see the next test , I will let you know the numbers, I am hoping and praying that the creatinine is not any higher

    Leave a comment:


  • pal
    replied
    Re: Creatinine fluctuation

    Originally posted by JeffDS View Post
    I too am stage 4 and not feeling sick(so far).

    I have been stage 4 for over a year now.

    As for protein, as I understand it as far as the kidneys are concerned protein is protein, animal/vegetable makes little difference. The big diff between animal and vegetable is the concentration of protein with there being a lot more of it in meat than in any veggie.
    I have been stage 4 for a year (was diagnosed last year in November). So far, I am feeling well and am working full-time.

    My renal dietitian told me that animal protein is complete protein but vegetable protein is not. One of my renal doctors told me that protein from vegetables is easier on our kidneys.

    pal

    Leave a comment:


  • JeffDS
    replied
    Re: Creatinine fluctuation

    Originally posted by I Am Blessed View Post
    Oh, and being stage 4 and NOT feeling sick is why I Am Blessed...beyond that which I deserve!
    I too am stage 4 and not feeling sick(so far).

    I have been stage 4 for over a year now.

    As for protein, as I understand it as far as the kidneys are concerned protein is protein, animal/vegetable makes little difference. The big diff between animal and vegetable is the concentration of protein with there being a lot more of it in meat than in any veggie.

    Plus animal tissue also contains more phosphorus and sodium than vegetable matter.

    As I understand it, and I could be waaayyy off;;;
    Protein harms kidneys in that an already damaged kidney is working 'overtime' to try and filter toxins and in doing so inadvertantly allows proteins to cross the filter. This increases internal pressure in the nephrons which causes an inflammatory response and damage to the nephrons eventually scarring them into uselessness.

    Leave a comment:


  • pal
    replied
    Re: Creatinine fluctuation

    Originally posted by iro delaney View Post

    so whether I was careful with my diet or not the number has been the same ..I cannot understand this at all
    I am confused
    iro delaney,

    My renal doctor told me that if I am able to control my BP and cholesterol, he does not think that my number will change much.

    pal

    Leave a comment:


  • iro delaney
    replied
    Re: Creatinine fluctuation

    Let me mention that I did not know I had CKD until 2 years ago when I had my regular cholesterol test and the creatine number was 1.1 so they went back and checked my numbers and discovered that I had 1.1 for the last 7 years before that.
    So, for the last 7 years that I did not know I had CKD I ate anything and everything but the number stayed the same ...how is that??
    I was then told 2 years ago about my condition so I am very careful with my diet , I am stil between 1.1 and 1.3

    so whether I was careful with my diet or not the number has been the same ..I cannot understand this at all
    I am confused

    Leave a comment:


  • Evanshope
    replied
    Re: Creatinine fluctuation

    My son hung on at 21 % function for an entire year by controlling diet and taking all his meds; you can prolong it indefinitely. He spent the year before that at 25-23% so there is hope. He just received a transplant last month..he was headed for dialysis(after suddenly dropping to 14%...he's a growing teenager and that set it off..he grew 3 inches then immediately started going downhill).
    Any chance you could have a family living donor? My husband just donated for our son. That could keep you from dialysis....and I consider this my son's 'divine healing'. He has a new functioning kidney and he's now at 85% function...that's a miracle to me

    Leave a comment:


  • TRB
    replied
    Re: Creatinine fluctuation

    Almost zero red meat and limit my animal protein to 6 ounces a day. Exercise as much as I can which is a fair amount since I'm still young at 45. I bike up to 4 times a week and also have had better control of my diabetes. My jump in Creatinine was for only 4 months and I have now settled back to where I have been for the past 3 years. So I'm not sure I would say I've lowered my numbers. I do feel if I was eating pizza and hamburgers my numbers would be higher so I feel the diet is a must.

    Leave a comment:


  • iro delaney
    replied
    Re: Creatinine fluctuation

    I am really glad to hear that creatine numbers can improve , I thought the best anyone can do is remain the same and that kidney disease cannot be reversed....
    I have been for the last 9 years between 1.1 and 1.3 no diabetes or high blood pressure
    I am hoping to stay steady for a while anyway......so what can we do to get better creatine numbers besides diet
    Are you very strict with your diet ? I try to eat the right things but not always
    Please let us know how you went from 2.3 to 1.5
    Keep up the good work

    Thanks

    Nicole

    Leave a comment:


  • TRB
    replied
    Re: Creatinine fluctuation

    Thank you and I would like to see us all have positive news.

    Leave a comment:


  • ddarling
    replied
    Re: Creatinine fluctuation

    Glad to hear the good news. I'm verry happy for you.

    Leave a comment:


  • TRB
    replied
    Re: Creatinine fluctuation

    Yep I'm pretty happy after 8 months ago being 2.3. I'll continue to eat better and try and get some weight off. Diabetes has been doing well also so I really have few complaints.

    Leave a comment:


  • I Am Blessed
    replied
    Re: Creatinine fluctuation

    Yay!!!! Isn't it great to get good news!?! I'm hoping mine will be stable, as well. My creatinine is much higher than yours. Treasure your kidneys!

    Leave a comment:


  • TRB
    replied
    Re: Creatinine fluctuation

    Doc report, 1.5 Creatinine and stable, all other numbers were in the good range.

    Leave a comment:

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