GFR: I walked into the hospital with a GFR 1... - Kidney Disease

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GFR

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I walked into the hospital with a GFR 14 Stage 5 2 weeks later I was at 18 GFR I kept it between 14 and 18 finally getting my transplant at a GFR of 11 incompletely by listening to my transplant team and most importantly my diettition who had RENAL exspeariance. Diet is everything.

12 Replies
Charlene_Coxhead profile image
Charlene_Coxhead

Well done I couldn't agree more. Diagnosed at 20, 18 years ago and been put on the transplant list at 7.5 and now at 4.5 but still off dialysis but been told today I will start January. You listen to what your doctors and dietician say you can beat the odds. Don't leave changes till tomorrow as that day won't come.

So pleased your doing so well.

Keep you the hard work and enjoy your new cbapterbof live

Charlene

My GFR has been fluctuating between 17 and 20 percent for the past two years & I am also stage 5. When I first started going to classes and learning about GFRs and transplant, my doctor along many others, has suggestions changing my diet. It took awhile because I’ll admit, I’m not the most healthy person in the world and I enjoy my junk snacks here and there 🤷🏼‍♀️🤫 but I’ve noticed once I started changing how I ate, I feel so much better than I have before. But trust me, I still have my days where I’m tired and lay around without an appetite. Diet and taking your medication is key to feeling good, even when you don’t feel so good. Keep up the good work!

rabbit01 profile image
rabbit01 in reply to

I agree sticking to a renal diet is very hard especially when at times there does not seem to be an immediate correlation between what you eat and how your feel or indeed what your numbers say. BTW do you mean that you have dropped to stage 5? If your eGFR is going between 17% and 20% then that is stage 4. 15% or below is stage 5. I hope you can stay at stage 4 for as long as possible.

in reply to rabbit01

I’ve been constantly told that I was stage 5 but it does make sense if my GFR was at stage 4. & thank you, I hope you feel better soon. ❤️

Frankie24 profile image
Frankie24 in reply to

Yes you are stage 4 at this point, if your eGFR is between 17% and 20 %, keep doing all the proper things, diet, drinking plenty of water that you need. I felt great while still at this stage of the game unfortunately did not last. I pray that your numbers hold for as long as possible cause it is not fun to keeping going down. I have just started dialysis, can hardly breathe or walk and still trying to live my life at the same time. The nephrologist said I should start to feel better by Christmas, which I hope and pray is true. My thoughts and prayers are with you.

in reply to Frankie24

Thank you, I hope you do. That would be an amazing Christmas present! I’ll keep you in my prayers ❤️

Frankie24 profile image
Frankie24 in reply to

Thank you so much !

steve680 profile image
steve680

GLORY! I refuse to listen to my doctors! They don't know everything! I myself is at GFR of 14.

Frankie24 profile image
Frankie24 in reply to steve680

Good luck to you....I have kept going at 9 % however my quality of life is not so great anymore. I could keep going but I want more for my life than just working. I wish you the best.

steve680 profile image
steve680 in reply to Frankie24

Thanks Frankie. When I was first diagnosed 12 years ago with CKD my GFR was 20 and was told by the doctors to get ready for dialysis. I've managed to stay off dialysis for 12 years, but I'm worried it may be approaching soon. I have an appointment with a transplant doctor at the end of November to get put on the transplant list. I hope I qualify but I know there's a lot of hurdles in getting approved. I'm also afraid of how EXPENSIVE a kidney transplant is even if you have good insurance (I'm not yet old enough for Medicare), due to all the medications one needs to take for a long time. Anyways, I'm focused on getting myself in the best possible health in the next month as that's always the best thing to do. I guess it all comes down to quality of life and I can certainly understand starting dialysis when one's GFE gets down to 9%, especially if you're experiencing a lot of symptoms. That's kind of my criteria for dialysis - when the benefits outweigh the negatives, i.e. that I'll feel better in spite of the inconvenience. I hope you start to feel better now that you've started dialysis.

Frankie24 profile image
Frankie24 in reply to steve680

Thanks Steve, it sounds like you have taken excellent care of yourself, you are to be applauded. I hope you stay the course and things turn out well for you !

Drakula profile image
Drakula in reply to steve680

This is great to know that you r able to delay dialysis from 12 years

You were diagnosed at 20 percent.

Kindky share your strategy... What is the nature of your ckd.

Mine is an autoimmune disease... Lupus nephritis.

I was diagnosed in 2012 but and my creatinine was stable for 3 years but from 2015 it is increasing.

Now my creatinine level is 2.85 with egfr 28

I am 30 year old male

Kindly share your health strategy

The thought of dialysis is giving me sleepless nights

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