When is the right time?

[JoanneLi]

I have eGFR of 11%, and am working full time. I'm generally very tired, and am starting to feel nauseous a lot of the time. My consultant isn't suggesting dialysis yet, and I would like some advice as to when is the right time to take this step. I know that dialysis brings it's own problems, so don't want to start too soon. I feel pretty rubbish, but have nothing to gauge how bad I feel compared to how bad I will get. Any thoughts or suggestions would be appreciated.

[Jayhawker]

My renal function suddenly plummeted from creatinine at 2.0 and eGFR of 28 to creatinine of 4.65 and eGFR of 8 in early January of 2017. My nephrologist didn’t put me on dialysis when that happened. He worked hard to get my function back. But I remaind at about that level for 10-11 months. I was definitely experiencing fluid retention at that point. My blood pressure elevated which was actually good as it had been running quite low.

But after pulling me off BP medication and a low dose diuretic, my kidney function improved to creatinine of 3.5 and eGFR of 11 or possibly 12. That was in Oct of 2017. Since then I’ve experienced gradual continued improvement to creatinine of 3.0 and eGFR of 15 (although my most recent lab showed a big drop back down to creatinine of 4.0 and eGFR of 11. (I’m hoping my next lab the first week of September will show an improvement and that the lab on July 31st was just an outlier result ...)

Through all of this I have, for the most part, had no fluid retention. My electrolytes have been in check, etc. So I’ve felt tired and sluggish but otherwise have not had many symptoms. I’ve had a few bouts with itchy skin. I’ve had minimal nausea and no metallic taste in my mouth. No breathing problems, etc.

So here I am in renal failure since early January of 2017 and not yet on dialysis. I’ve moved within the past 14 months so now have a new nephrologist. He says the same thing my first nephrologist said. If he starts me on dialysis too soon I won’t feel much better; if he waits too long, I’ll feel a lot better. They both have said it’s a timing situation based only in part on my labs. How I’m feeling and functioning daily is a significant part of the decision.

I keep thinking I’ll be put on dialysis any moment... I don’t want to rush the situation but I also have days where I think I’d just as soon get started and make the adjustment. Then I can get on with my life and my “new normal.” Nevertheless, I’m still functioning on a daily basis in renal failure and not yet on dialysis🐶

Jayhawker

[WYOAnne NKF Ambassador]

First, I think it is an individual thing. It also depends if you are experiencing side effects of low GFR....tired all the time, nauseated, vomiting, headache, diarrhea, etc My doctor started me on dialysis when my GFR was in the teens, but I was having a horrible time with migraines and vomiting and would cause severe dehydration. Dialysis helped me, but then I was only on hemo for about 6 weeks when I got THE CALL for my transplant.

I know someone whose GFR ranges between 9-12, and has no symptoms, so is not ready to start dialysis yet.

Have you been evaluated for a transplant?

[JoanneLi in reply to WYOAnne]

Hi, yes, I've been evaluated and have been on the transplant list for about a year now.

[mhawk123]

I agree with the posts that this is a decision for you to make with your nephrologist. I waited for over six months as my eGFR went to 9 and my lab parameters began to change. It was decided to start before I got severely symptomatic since PD has to be adjusted to and peritoneal tube placement has to be scheduled. I was fortunate to have only eight months of home PD, at which time I got the call at 10 pm to come in for kidney transplant.

Have you decided to be placed on transplant list at two institutions?

[curiousmind2019]

Hi JoanneLi,

You have the ultimate say to when you want to start.

But I also wonder if there are things that your nephrologist can do to make you feel better. I was anemic and I didn't know it was so bad. I had shortness of breath and trouble simply walking at normal speed on the streets, that's when I thought I needed dialysis (at egfr 10). I felt a lot better after first 2 weeks of PD dialysis training, which was strange because I wasn't on much dialysis at all (an hour 3 times a week during training). So it wasn't really the dialysis that was making me feel better. During this time, they also started giving me infused iron shots and Aranesp (enzymes to produce red blood cells). I felt a lot better after 2 weeks of that and the anemia improved significantly. Might be worthwhile to see if you are also anemic.

[JoanneLi]

I'm already on weekly Atenesp, although I wish they would also give me iron, which is always low. They don't do anything about it until my hb has dropped too low, then it takes ages to get back up again.

[nh1966]

I waited as long as possible to start, mainly because I was scared to death of dialysis and I knew once I started there was no going back. I finally cried "uncle" with a eGFR of 6. The nausea was getting unbearable and it felt like someone was twisting my my GI tract in knots. It's all up to you and what you can tolerate.

[Mj1965]

Hi Joanneli I know exactly how you feel, I'm MJ1965 I've been on dialysis for 3yrs now. When I first started my gfr was 10 and I told my care team I was ready to go on dialysis because I didn't have energy to do anything. I'm on PD dialysis and once you get use to it its not as bad as you may think, it's just an

inconvenience.

I'm on manual bags twice a day at the moment, I was on the machine overnight but I found it to intense. What ever you decide I would advise you not to have haemodialysis as that will drain you.My nephrologist told me that himself.

Take care and look after yourself.

[JoanneLi]

Thanks Mj, you take care of yourself too!