How low eGFR is wise til starting dialysis?

[LisaBart]

I realise everyones situation is different... at 7% my partner is still functioning "ok"...... but is there a % that the neph will say...ok that's it you need to start now?!


Thanks

[galvo]

I started at either 6 or 7. I thought that I was functioning "ok" also, but the improvement noted after starting dialysis was really dramatic!. At 7%, I am surprised that the neph hasn't started things moving. Has your partner got a fistula?

[LisaBart]

Hi, thanks for reply, yes his fistula was initially done at about 10% at my insistence...it was good for a year then blocked, patched, didn't work, and finally buzzing nicely again since early April.
One neph would like him to start, others say hold out as long as you can.  Partner says he wants to hold out!
I tell him he will feel better, I think he is so used to feeling like crap!

[goofball]

eGFR stands for  estimated Glomerular Filtration Rate.

Not only is not a good estimate, but it doesn't correlate very well with what other toxins have accumulated in the blood stream that are more harmful than creatin (which is rather benign).

Your neph might look at eGFR to get your fistula done in time, but to start dialysis, it's usually all about the symptoms.  Dialysis keeps you alive... but it's fraught with other risks.

[nataliemac]

im not sure what 7% is
Mark was almost 800 when he was started on it

[LisaBart]

His estimated kidney function is at 7% Natalie
Goofball...yes I hear you with other risks, and as he has already had a 5 way heart bypass 5 years ago, I wonder if the dialysis will cause problem with his heart function.
I guess time will tell.

[iolaire]

His estimated kidney function is at 7% Natalie

My dialysis center nurse had me do a 24 hour urine collection and when I asked about the results she said that I have about 10% kidney function left.  At times I wonder if I was on dialysis too early or if maybe I don't quite need it as often as I go.  But I do think I've had much more energy since I started dialysis so I have to assume its for the best.  For quite some time before dialysis my energy level was very low, when I was able on the weekends I was napping a lot.  Sometimes it felt like I would get up, have breakfast and then take a nap.  Plus a few weeks before dialysis my legs started to feel off, sort of itchy or irritated, to a point where it was impacting my sleep.  My Dr always said that when to start dialysis is symptom based, not lab based, and I'd feel better once it started, and that turned out to be true.

[Deanne]

Mine was at about 8 - 9. I still felt fine. I only started dialysis because I was on the transplant list and one of the transplant center requirements was to start TB medication after my transplant evaluation showed I tested positive for exposure. The TB medication put me to sleep. I was trying to go out and do things, but at every stop, I'd need to take a nap in the car before I could get up and go into wherever I was. Once I woke up in the car and had to look around for a minute to figure out where I was. My neph said I might be able to tolerate the medication if I started dialysis. It was true. I started dialysis and the medication problems disappeared.

[LisaBart]

Mine was at about 8 - 9. I still felt fine. I only started dialysis because I was on the transplant list and one of the transplant center requirements was to start TB medication after my transplant evaluation showed I tested positive for exposure. The TB medication put me to sleep. I was trying to go out and do things, but at every stop, I'd need to take a nap in the car before I could get up and go into wherever I was. Once I woke up in the car and had to look around for a minute to figure out where I was. My neph said I might be able to tolerate the medication if I started dialysis. It was true. I started dialysis and the medication problems disappeared.

His estimated kidney function is at 7% Natalie

My dialysis center nurse had me do a 24 hour urine collection and when I asked about the results she said that I have about 10% kidney function left.  At times I wonder if I was on dialysis too early or if maybe I don't quite need it as often as I go.  But I do think I've had much more energy since I started dialysis so I have to assume its for the best.  For quite some time before dialysis my energy level was very low, when I was able on the weekends I was napping a lot.  Sometimes it felt like I would get up, have breakfast and then take a nap.  Plus a few weeks before dialysis my legs started to feel off, sort of itchy or irritated, to a point where it was impacting my sleep.  My Dr always said that when to start dialysis is symptom based, not lab based, and I'd feel better once it started, and that turned out to be true.

Thanks for your input.  Yes couple of the nephs have said dont look at the figures, its how you feel..symptoms etc
Partner will get up at 8am generally but is back having a sleep by 10 til sometimes 1pm, unless he has to push himself to do something.
He finds if he keeps busy he isnt too bad but when he stopped he crashes. I think because he has peripheal neuropathy he doesn't feel any itching in his legs, but they used to jump about
when he slept....I think he is fortunate to be fairly symptom free ie a little gagging at times, good days and bad days....yesterday said felt shocking, today not too bad.

Am pleased dialysis is making you both feel so much better.

[obsidianom]

Since he has a fistula, he could do a trial on dialysis and see how he feels. The chances are he would feel better and see the difference. He could always stop it if he didnt feel like it made a difference. I bet it would though. It was night and day with my wife when she started.

[LisaBart]

Since he has a fistula, he could do a trial on dialysis and see how he feels. The chances are he would feel better and see the difference. He could always stop it if he didnt feel like it made a difference. I bet it would though. It was night and day with my wife when she started.

You can trial dialysis??? I wasn't aware of that....I may bring that up at next appointment.  I thought once you were on it that was it?

[LisaBart]

Ok, so he is now at 5% and he really must make a decision tomorrow lest he will lose the one place left they have at the clinic...
Will see neph tomorrow...and even though he is functioning ok..as he says....our 14 year old son said Dad...you better start so you can do other shit except sleep ! Excuse his language!
And I was discussing stuff with nurse via phone, who we know quite well..she told me not even to bother getting a room ready at home for the next 3-6 months!!                         

[LisaBart]

So Alan had his first 2 hours of dialysis yesterday after he had seen the nephrologist.  All went well, it's very interesting to see the hook up and steps the nurse takes....
I was akskng questions which I think will take me time to retain answers, but they were happy to answer my questions. He will go again on Monday...

[iolaire]

So Alan had his first 2 hours of dialysis yesterday after he had seen the nephrologist.  All went well, it's very interesting to see the hook up and steps the nurse takes....
I was akskng questions which I think will take me time to retain answers, but they were happy to answer my questions. He will go again on Monday...

Good luck, I find it much less scary/troublesome than you might expect based on the name of this forum.

[LisaBart]

Yes I think he actually felt the same. I said to him today, you will be asking yourself soon why you didn't start earlier!

[galvo]

Good luck to him! And you!

[obsidianom]

2 hours is short. I assume they will be increasing the time soon after he adapts to it. When that occurs he should really notice the differance.

[LisaBart]

Yes he is on for 3 hours this morning.  Am about to go and collect him as had to be there at 7.15am and I had to come home and get our son ready & to school.
He was asking questions when he was there which was great, and as he is a plumber is interested to know how it all works
Maybe he can sit there and contemplate another machine design   There is plenty for him to watch, there are about 12 chairs which includes the "home corner".
Will update agin

PS....and its sooooo nice to come home and have house to myself to tidy and get something done with no interuptions !!!