Kidney disease... Advice please xx

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EmmaReed84
EmmaReed84 Posts: 263 Member
in Motivation and Support
Hello, the reason I am posting here about my kidneys is because this has been the only place I have ever known anyone to comment and have the same issues as me.

I posted last week about how I hated my kidneys and felt so rough. Something did not feel right so I called the doctor and had some blood tests done.

Well today I got a phone call at 8am from the doctor saying my results have concerned her. I was at stage 3b (eGFR 32) in December however my results has come back with eGFR at 25!! A huge dip! I don't have an appointment with the specialist until 22nd May, but I have called the consultant's secretary and she is going to try and get me an appointment this week.

So for those who have had kidney disease, dialysis or a transplant, what stage were you? How fast did it progress? I really want to cry right, but find myself laughing instead in a desperate attempt to not cry!

Replies

  • skinnyinnotime
    skinnyinnotime Posts: 4,141 Member
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    I have no advice Emma, just wanted to say I'm sorry you have to go through this.

    Hugs to you x
  • ebk8767
    ebk8767 Posts: 5
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    Hi there.....I absolutely know what you are going through. I just had a kidney removed due to cancer and now I am in Chronic Kidney Disease Stage 3....gfr...33. Right after surgery it was 24. I am worried just like you. I have an appointment with a nephrologist in June. My other dr. thought I was doing just fine.....so I thought that was the time to switch to a specialist. Good luck to you and let me know soon how you are doing.
  • Vune
    Vune Posts: 673 Member
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    I've had my transplant for almost 13 years now.

    When they failed, they failed. I felt crummy for a few months, finally got some bloodwork, and went in for a blood transfusion that evening. It was a wonder I got around and performed on stage in the months leading up to that. Dialysis followed within days.

    I have friends who have lived dialysis free for years with varying stages of kidney disease. I think I might be a special case. I have the genetic mutation of Alport syndrome. I'm not sure how much that has to do with it. I went on dialysis at 19 and had my transplant at 21.
  • redhotbeads
    redhotbeads Posts: 62 Member
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    I was wondering if anyone w/ CKD was on here. My GFR bounced between 48 and 60 and I have a family history, so I am trying to eat a lower protein, more kidney-friendly diet to at least keep my GFR where it is. I'm wondering whether I can change my "optimal" nutrients on here to track that way.
  • chuckdims
    chuckdims Posts: 3
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    So, this an old post, but I'll comment anyway. It took me about ten years to go from stage 2 to 5. I'm stage 5 now, GFR of 6-8, hemodialysis now for 14 months.
  • KandGRanch
    KandGRanch Posts: 131 Member
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    my uncle has polycystic kidney disease, has gone through three years of dialysis. he has bad days here and there, but it looks like my aunt will be a match so hopefully he will be getting a kidney next year sometime. hope everything goes smoothly for you, best wishes.
  • Leigh_b
    Leigh_b Posts: 555 Member
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    redhotbeads wrote: »
    I was wondering if anyone w/ CKD was on here. My GFR bounced between 48 and 60 and I have a family history, so I am trying to eat a lower protein, more kidney-friendly diet to at least keep my GFR where it is. I'm wondering whether I can change my "optimal" nutrients on here to track that way.

    yes... you can customize your goals so that you put the % of total calories for protein, fat, and carbs to be what you want them to be. Also, you can choose which other nutrients you want to track... sugar, sodium, etc.
  • Mjones23456
    Mjones23456 Posts: 57 Member
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    I just happened to search this out today to see if I was the only one in the ckd boat. It is nice to see that I am not. My gfr runs around 50 and has been stable for years so I have maintained at stage 3. Mine was caused by uncontrolled high blood pressure so I watch that very carefully. Does anyone know if this disease can be maintained or if progression is the natural end for this?
  • Wronkletoad
    Wronkletoad Posts: 368 Member
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    Does anyone know if this disease can be maintained or if progression is the natural end for this?

    this is best answered by your nephrologist, as s/he'd know your history, etc and would be better able to address this than strangers who 1) aren't your nephrologist and 2) wouldn't know your specifics.

    you know and should be able to report to your MD: adherence to diet, exercise, and medications. you should know your BP over time to be able to help your MD decide the level of control. you are probably having frequent enough appointments and labs to get your egfr as consistently as your MD would like to show stability/progression there.

    why ask a forum that may not know when you have most of the info and have a physician who's task it is to help?
  • tony87ooo00
    tony87ooo00 Posts: 4 Member
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    Mjones23456 wrote: »
    I just happened to search this out today to see if I was the only one in the ckd boat. It is nice to see that I am not. My gfr runs around 50 and has been stable for years so I have maintained at stage 3. Mine was caused by uncontrolled high blood pressure so I watch that very carefully. Does anyone know if this disease can be maintained or if progression is the natural end for this?

    So... first, I agree with Wronkletoad that you need to ask these questions of your professional treating providers. However, people ask questions like that in a forum because they are scared and it allows support and hope from someone who has experienced it themselves or may be. The sense of knowing someone else may have gone through the same thing and came out ok can mean a lot. And, sometimes now with the internet, it helps someone feel like they can better ask the things they need to or further explore what their concerns are. --- I did ask some of those questions when this happened to me. My PCP really messed something up and then didn't tell me until he was too worried. The nephorologist recognized it in the medical record easily. So, it made me less trusting of the PCP for sure and more concerned about what other "professionals" were telling me. However, that all said... some people are at Stage 3 and never ever find out... Many stay there and never progress. So, no... there is no ultimately already determined negative outcome coming. It matters a lot what your body does and what your own health history has been, especially with your kidney numbers. That said... it is not going to hurt, and will only help, to give your kidneys the best chance to continue to do the job they are doing as well as they can by not stressing them further. Unnecessary work coming from a diet that can be changed in order to help reduce the workload can be one of the best things you can do yourself. And, that means getting educated and asking for the information you need from your treating providers so you can do that. (I realize your post was really really old now... but someone reading this now may benefit from it. And, maybe you can come back and post an update. What did happen? How is it now? etc)

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