What GFR when you started dialysis?

[Mannyboy17]

Hi guys may i know for those undergoing dialysis treatment what was your GFR value when your doctor advice you that u need dialysis? Thanks in advance

[rabbit01]

Hi. I was at 15% when the doctors told me I need to meet with the dialysis unit and choose an option. That was in June 2018. Then I had the PD pipework done when I got down to 8% which was October 2019 (so three weeks ago). Note: I had been putting off the operation since February when I was at 11%. But I would not suggest leaving it as late as I did. So I am finally starting dialysis next week with an eGFR of 7%.

[Mannyboy17 in reply to rabbit01]

Putting off the operation? U ment the PD pipework? Thanks alot for the info.

[rabbit01 in reply to Mannyboy17]

Yes. In February I was supposed to have the PD catheter fitted but the hospital kept messing about changing dates and there were various other admin foul ups and it just put me off so I kept going as long as I could on my native kidneys. All the best.

[AnneEG in reply to rabbit01]

Can I ask whereabouts in the UK you are..i'm in Scotland and would love to meet people here with similar condition.

[rabbit01 in reply to AnneEG]

I am about as far away as you can get in the UK. I am in Hastings on South East coast of England.

[AnneEG in reply to rabbit01]

I'm originally from Essex but my dad was from Fife.

[AnneEG in reply to rabbit01]

Hi rabbit01, can I ask if you had a local anaesthetic for your PD surgery?

[rabbit01 in reply to AnneEG]

My original surgeon was going to do it under local but he retired and his replacement would only do it under general (which I really did not want as my Dad died under anaesthetic at a very young age and he was a lot fitter than me!) But anyway I thought well I am dying anyway so what the heck. So I had a general.

[AnneEG in reply to rabbit01]

I'm terrified of general anaesthetics and definitely wouldn't want one. I thought they did them under locals now. You are not dying..look at Kidney coach after 18 years. I've had to change my details after being scammed.

[rabbit01 in reply to AnneEG]

It all depends on the surgeon. If I had of left myself more time then I could have looked for another hospital and insisted on a local but I was down to 7% so I needed to bite the bullet and have the operation and start PD. It all worked out well for me. I am doing well on PD but is its very time consuming. Currently doing it manually but hopefully I will move to an overnight machine eventually once I have had the training.

[fivehens]

5 but going down slowly. Gave in to dialysis when I felt grotty.

[hazel-hearty in reply to fivehens]

What do you mean by feeling gritty? I am at 15 and I get tired easily but I still ride my bike and try to maintain a good diet. I only have one kidney, the other one is atrophy . The nephrologist said I am “on hold”.

I chose to have home dialysis.

[3Kidneys]

I was at 8 gfr this last time, first time I was at 6 but it was acute renal failure and I was really out of it.

[KidneyCoach NKF Ambassador]

9% nearly 18 years ago. Blessings.

[hazel-hearty in reply to KidneyCoach]

Great! I am putting mine off as long as possible. I see the dr every 3 months. The gift went from 17 to 15 in 3 months.

[Mannyboy17 in reply to KidneyCoach]

Wow thats amazing. If u dont mind hope you can share with us your secret. So from 18yrs ago you are undergoing dialysis? Whats your age now? You are indeed blessed. I hope too can prolong my life more i have 1 child. Omly daughter and she just gave birth to my grandchild.

[Tubby207 in reply to KidneyCoach]

You give me hope.

[Tubby207 in reply to Tubby207]

Recently learned that I am CKD 4.

[Carillon]

I too am at 15%. i want to wait till the very last moment. I am not sure when that will be or if it will be an emergency visit to the hospital. What i find is some nephrologists just want you to get on dialysis asap so you'll get out of their hair. They dont want to hear about your whining and worrying. Frankly, I agree with what others have said about waiting until you feel really groggy or are at 8% or so, then I would reach out for that service. of course of you can get a living donor before then, it might be better to have the transplant done by 10%. There is no real empirical data available as we are all biologic and as such have so many different variables impacting our health and disease. Good luck and try not to be too freaked out. Go out and enjoy your life NOW!

[rabbit01 in reply to Carillon]

You are right about nephrologists just sending people to dialysis once they get low. I was diagnosed at 17% and my nephrologist didn't do a single thing to help slow down the progression to dialysis. If I knew then what I know now I reckon I could have had at least another year dialysis free.

[HopeKidney in reply to rabbit01]

Hi,

What can be done to slow down the failure? Diet didn't change anything. Possibly high blood pressure even deteriorated the kidney functions. I am eager to know if anything can be done?

[rabbit01 in reply to HopeKidney]

It does depend on the route cause of the kidney problems and other factors. Mine was due to antibiotics prescribed for a chest infection. But certainly I found that following a plant based diet slowed down the decline and it brought my urea, potassium and phosphate down to normal levels but by the time I discovered it I was down to less than 10% eGFR. I also had protein in my urine and that causes further kidney damage. There is medication that my nephrologist could have tried to reduce the protein leakage which would have reduced the speed of the subsequent damage. None of it would have kept me off dialysis for ever but I feel it would have given me more time.

[Cookiienanaari32]

Hello to all mines went from 34 in 2016 to 11 in 17 and then it went down to 8 % after that i had my surgery in june 19 ive been on dialysis now for 3 months its a life changing expirence for me cause i have 3 small children plus a husband 12 8 and 3 all girls 👧👧👧 i have my good days and bad days some days i cry but thats normal due to what we are going threw i pray they find us all kidneys havent been on in a while but any questions feel free to ask god bless us all 🙏

[Jmchip]

I’mm at 31 diagnosis at stage 3. Scared but reading posts help. My gfr was good 2 years ago, got better then dropped again. Numbers all over the place. Just now getting ultrasound done. New doc. The previous doc saw high gfr and never ordered more tests. You have to take charge of your own health. Read and read. Ask questions and demand answers.