When does dialysis start and at what stage do you get on the Transplant List.

[denman]

My wife was identified as having Kidney Disease some 12 years ago. The decline in Egfr for many years was continual but slow. However, in the last year her Egfr has fallen by 3 percent each two months. Her Egfr was 8 in February. She has not yet been prepared nor started on dialysis. I am assuming she will be having a tube fitted for Peritoneal Dialysis very soon. She suffers from extreme tiredness, headaches, confusion, burning throat sensation, muscle cramps and cannot get a good night's sleep. When should dialysis start and how soon can PD start once the tube is fitted. Also can anyone shed light on how long it should take to get a referral to be placed on the Transplant List. She has been waiting since last October for the referral appointment and has now been given one for May. This seems a very long time while her general health and kidney function are worsening.

[cgih]

It seems to vary from area to area, and from person to person, depending on symptoms and general health. As a general rule, my hospital said they generally consider dialysis when eGFR is 15 or below and transplant list at 20 or below.

I had HD first (when eGFR was 7) and then PD. I continued HD while my PD tube was being fitted. It took about 2 weeks after the PD tube was fitted to start using it, partly to ensure it was all ok and partly to allow time for training on PD.

eGFR is not the only thing they will look at - it depends on all the different blood results. Your wife should speak to her consultant if she has not been told all her numbers, and should just ask outright when he thinks dialysis will start. Also about the transplant list.

I hope this helps.

All the best.

[denman in reply to cgih]

Many thanks for your very helpful information. My wife does get a series of blood results at each of her 2 monthly appointments. I anticipate her Egfr will be just 5 at her next appointment which is this week. Her referral to a hospital to get on to the transplant list is not until May. The hospital is about an hour's drive away. I just wish she had an appointment when she was physically better. When she is on PD it will be difficult to get there and back home between PD sessions?

I wish you well and hope your PD is going well.

[Hardworkthisbeingpoorly]

Hi my personal opinion is that whichever renal team your wife is under they are very slow but this does vary from person to person . I suffered with tiredness sickness and was terrible for remembering things . I had my PD tube fitted and almost straight away was doing dialysis 4 times a day every 4 hours and after a week or two my tiredness subsided and other symptoms regressed . I started to feel a lot better and knowing the PD was clearing out all the toxins and excess water my body was holding ! Although the fluid restrictions are very hard for me to keep to I have good and bad days but then again everybody does. If I was you I'd be writing all the symptoms down and how your wife feels and making an appointment to see your renal team. I find that writing things down is a good way to remember everything because nine times out of ten I get to my appointment and foget half of what I need to say . Hope this helps I've been on PD four years so have a little bit of experience if you need any advice based on my experience just message me ill be glad to help

[denman]

Thankyou - I am very grateful for your very helpful advice - and I may take you up on your offer of help if needed when PD starts. Thanks again.

[phindzapxaba]

Hellow I'm a renal patient too on stage five n I'm on PD since april this year I'm 36 yrs of age si I js heard from an old lady that was on dialysis (PD) the doctors stops her because she was taking tables from tasley her kidneys are back to normal and I've bought it too but I'm still waiting for my next app to see that is there any difference on hopefuly it will work, Tasley is the the company who sells different medication and they have machine that sees inside your body what's going on or wrong, what I've dd is dat I dint tell them that I'm on dialysis but their machine shows that I have kidney problem then I told them after the checkup that I knw my problem. Good people I'll let you knw after my next app if there's any changes in my blood results if so that's means the Tasley product are working. Please feel free to ask me any questions via my mail because I hardly login here my mail is [e-mail]

Thank you so much

[cassie-brzoza]

I was told I'd have to start dialysis when my eGFR was at 10, however after waiting for appointments and whatnot under the NHS it wasn't until another month passed before I had the PD catheter procedure. I started dialysis when my eGFR was at 7 by this point. I think it does vary from the area you're from and renal care team you're under. When I started I was fitted with a PD catheter and they tried to start me on dialysis 2 weeks after it being fitted, however I found it quite painful so they let me have another 2 weeks break. All in all, I waited a month after my PD catheter was fitted before I started doing dialysis every night at home.