What gfr were you when you started dialysis...

[Bettyboo]

Hi there.

i joined this forum last year but haven't really posted much. I am a 38 year old mother of two who works full time. i was diagnosed with ckd approximately 5 years ago but i have tried to keep it mostly to the back of my mind. I see a neph every 4 months and at my last appointment in June i was told things looked reasonably stable, creatinine 220, gfr around 20. i have just had my next bloods though for my next appointment (next Thursday) and things have gone a bit downhill. Creatinine now 360, gfr 12. i do feel reasonably well though, i suffer a bit of tiredness due to the anemia which they said last time they would do iron infusions for if i don' t respond to the oral tablets. I also seem to have a lot of cramps in my legs and feet but nothing that stops my day to day. I was just wondering at what stage you started dialysis or if you were a candidate for a transplant (which i am hoping for), what gfr they started planning?

Thanks in advance xxx

[MandyA]

Hello,

I was asked to think about renal replacement options (transplant/ different modes of dialysis) when my eGFR was 20.

I was put on the deceased donor transplant waiting list when my eGFR was 15...... that's a European Best Practice guideline.

I started dialysis when my eGFR was about 8.5, but this is quite variable, depending on individual symptoms.

Good luck.

Mandy

[Bettyboo]

Thanks Mandy,

I will see what my consultant says next week. I am not 100% about how gfr works though as the 12gfr that I mention is the one printed on my blood report but when I see my consultant he has said in the past that my actual gfr is higher than on these results. I suppose a different more accurate equation which I hope makes better reading than the blood test one xxx

[Dibs]

Hi Betty.

I've been on the transplant list for seven months. I guess my eGFR was 12 or 13 then. Last test was 9. They are thinking about getting the catheter in soon, if PKD hasn't stretched things too much, with a view to starting dialysis in the new year. Can't say that I'm really suffering. I too get cramp, but fatigue and not being able to plan too far ahead are a nuisance.

My consultant said that if the symptoms don't force the issue, they aim for starting dialysis at 8.

[MidgeMan90]

Being a crash lander I was put on dialysis when I had a kidney function of <2%!!

[thegallops]

Hi Betty blue, Just joined the forum, had CKD for 15 years, creatinine levels have slowly risen to now around 3.9 (GFR level 5) my kidney function is approx. 15%, I am due to have a fistula fitted in Feb 2016 to be ready if/when I need dialysis. They say dialysis may be need when kid function gets to 8% or less.
But the most important thing IS ( told me by my kid professor on holiday in Cyprus) He said forget percentages HOW DO YOU FEEL, and I feel ok yes I get tired but otherwise ok SO it is more how you feel. This guy ( professor Donan ) told me he has people with kidney function of less than 10% But they feel well so he does not dialysis.
Would appreciate any feedback on after effects of upper arm fistula fitting as I am due to have.
All