GFR 12... things are getting hard.

[OneForTheBirds]

The constant nausea and feeling I have rocks in my stomach (I have PKD, I guess I do have "rocks" in my abdomen" are starting to get to me.  I feel as if my head in stuffed in a pillow, my powers of concentration have declined.  I sleep a lot and have little energy for anything.

My GFR should hit 10 at the end of May, and 8 at the end of September.

I knew there would come a time when I would look forward to dialysis.  This time is now 

[cassandra]

Good luck OneForTheBirds I hope you'll feel better soon.

Take care, Cas

[hatedialysis2]

I am a big believer in food as medicine and exercise.    Have you looked into diet and lifestyle modifications can help ease your symptoms?   

[Michael Murphy]

Most of us have fought the good fight to avoid the dreaded d word.  But when the symptoms start showing up its time to start.  Putting it off after a point becomes a exercise in futility.  It ain't great but it's not as bad as it seems. While I wouldn't recommend it as a life style choice it not as bad as I feared it would be.  I count 18 hours a week as dialysis time that leaves 150 hours a week for sleep and a life.

[Sibella]

OneFortheBirds, I'm right with you. GFR is 13 although I am feeling a bit better than the symptoms you describe. But that is just today. Really scared about dialysis. Have an appointment for a fistula in March. Hope it's soon enough. Sending good thoughts your way.

[lrgh]

How do you have a gfr "timeline"?  Is there an "expected" rate of decline?  I recently fell below 15 % and my doctor didn't give me any sense of how long things might take, just said he didn't have a crystal ball,  but that I should start exploring my options, make some decisions and plan ahead.  I know there are lots of variables and everyone is different...but how did you arrive at those numbers?   
I hope it doesn't sound like I am questioning/doubting you, I sincerely would like to know if there is general timeline one can expect things to progress.
In a related question, how early in your, uh, journey, did you start telling people that you will probably be on dialysis/have advanced ckd?  I have told a few close friends, no co-workers.  Once I'm actually on dialysis I will widen that circle a bit.....if  i do pd, can still work and do exchanges at work, obviously it won't be much of a secret, but for now.....

[Michael Murphy]

My advise is not to worry about the numbers, for two years my nephrologist said it was time to start, but I felt great so I waited for a symptom to occur finally one day it did and started the next week.  I will also tell you the fear of dialysis is much worse then the reality.  If there is any possibility of having to go on visit a center and learn what it's about. I didn't and my first session was a horror story, not because of dialysis but because I was scared spitless.  The fears are much worse then the reality.

[Tkski]

Birds, last fall when my PKD started to accelerate, I started to worry about my #'s. After visiting the Mayo clinic and reading about Michael Murphy's experience, I decided that worrying every time that I had blood work done was not going to get me anywhere. It is what it is. I told my neph recently, " don't call me, I'll call you when it's time." He chuckled.

I had my fistula done last week. I'm at 12% right now......I'm on this side of the grass... life is good!

[charlesc]

I have been a member of this forum for some time but have not posted recently.
About low GFR, coincidence I was in to see my internest today for the semi annual checkup. I mentioned to him that I had just browsed through my note book and that I have been in "technical kidney failure" since 2010 a full 6 years. GFR fell to below 20 then and has not recovered. I have been as low as 11 but rock around 12-14 most of the time.
Point is don't dispair. Two of my neurologists, one treating and the other in the Ochsner Hospital Transplant Dept. have mentioned that they think the reason that I am not yet on dialysis is that I have been able to control my Potassium. I get a full renal panel blood test monthly so that I can follow it and the other items. I NEVER exceed the normal range in potassium. Yes the diet is strict but  I find it very manageable. My wife and I constantly check potassium on EVERYTHING THAT I EAT. It really is not that hard, sure I miss my Ice Cream and MILK I consumed a LOT of that and have not had a banana in 13 years but again if that is what it takes, and it does, then so be it. I don't eat nearly the amount of cookies, LORNA DOONS, come to mind as I used to as those and water as opposed to milk don't have the same ring!
Speaking of milk, I use  RICE DRINK that  looks and almost tastes like milk and is low in potassium.

Ice milk, soft serve is lower in potassium than ice cream so I indulge myself one a month or so.

This is my anecdotal evidence that it is possible to stave off the inevitable so don't give up. As the man said "I hate dialysis." I have postponed it this long and dint relish the day that my kidney gives up. By the way, I have lived with one kidney since I was 6 yrs old, there was a congenital defect in that ureter and the kidney ceased functioning. So this one has gone alone all these years, oh, I am 72.

CCC

[Charlie B53]

I am constantly amazed at how low some of you get before feeling like you need dialysis.   By the time I got down to 20% I was so sick and tired of being sick and tired all the time that I told my Neph to sign me up.  Get me started.  Since I had witnessed how well PD had worked for my Mother it didn't scare me a bit.  I started PD end of May 2013. Within a week I lost almost 40 pounds of water.  My legs looked about NORMAL, not leaking any longer.  First time in YEARS.

I'm down to under 5% now.  I swear that without PD that I would have been gone long ago.

I am still tired.

But I am NOT sick.

[Michael Murphy]

The problem seems to be a over reliance on numbers.  GFR seems to be a Good predictor of future dialysis but not so much as to starting.  I have written about the extra two years I spent avoiding dialysis. However I was not going through any major symptoms and the minor ones were kept in check by diet changes. Because of the numbers I had a fistula installed in 2011 2 years prior to dialysis.  Other than that ignored the numbers. Other then diet changes there is not much else you can do.  Am I happy on dialysis, yep, do I wish I was not on dialysis, yep.  However 18 hours a week isn't a bad trade off for feeling good, and walking on top of the grass in the sunshine.  Too many people see only the horrible things about dialysis and ignore the wonders around them.  My advise still is to see your doctor, let him or her worry about your numbers, watch your diet, enjoy your life. 

[charlesc]

I agree with Michael, numbers are numbers, it is how you feel and are doing. I have been in Stage 5 since 2010 and still at EGFR 11 or there about.
As was said follow the diet NO less.
If your insurance or medi-care will allow do a renal panel monthly in order to keep tabs on the "numbers" but following the diet limiting pot. will keep you in the game.

Someone asked about traveling with low function, we traveled for the past 10 years with the stated low function, travel while you can after dialysis it is a bigger problem.
Once I was accepted to the Transplant list then travel was curtailed due to having to be within striking distance of the transplant hospital.
CCC

[OneForTheBirds]

How do you have a gfr "timeline"?  Is there an "expected" rate of decline?  I recently fell below 15 % and my doctor didn't give me any sense of how long things might take, just said he didn't have a crystal ball,  but that I should start exploring my options, make some decisions and plan ahead.  I know there are lots of variables and everyone is different...but how did you arrive at those numbers?   
I hope it doesn't sound like I am questioning/doubting you, I sincerely would like to know if there is general timeline one can expect things to progress.
In a related question, how early in your, uh, journey, did you start telling people that you will probably be on dialysis/have advanced ckd?  I have told a few close friends, no co-workers.  Once I'm actually on dialysis I will widen that circle a bit.....if  i do pd, can still work and do exchanges at work, obviously it won't be much of a secret, but for now.....

I have PKD and the rate of decline is linear.  It's not linear in the early stages, but in the later stages the course is highly predictable.

[MuddyGurl]

CHARLIESC-  Yes the diet is strict but  I find it very manageable. My wife and I constantly check potassium on EVERYTHING THAT I EAT. It really is not that hard,

 I am very impressed!  Rarely do I see people who are willing to do what it takes with diet. ( a few here have done well for years because they are vigilant.. and eat foods that protect and sustain them)

Would love to hear more comments from you.

[OneForTheBirds]

I am down to 11 and right now my thirst is pretty much unquenchable, I drink all the time.  I am parched immediately after drinking.  It's crazy.

And I don't have diabetes or pre-diabetes.

[Michael Murphy]

Try hard candy, spray bottles work too, I prefer a squirt gun just spray in mouth it helps.

[OneForTheBirds]

eGFR down to 9.

Blood pressure... under control.
Phosphorus... spiked up to 1.83 (high normal range) 2 months ago but I hunkered down the renal diet and now down 1.44 (a bit higher than mid-range)
Anemia... close to normal, and stable
No vomiting.

Numbers look good but the nausea is bad and the appetite is low.  Activities of daily living drain me.

Thus it was decided that I would get the canula insertion in the next few weeks and start PD sometime this summer.  My eGFR is falling pretty fast, only so long I can be expected to last feeling so crappy.

[kickingandscreaming]

If you're feeling crappy, why not get started sooner?  I crashed at 6% and I didn't feel really crappy until pneumonia put me in the hospital and then I crashed.  Best not to crash if you can anticipate the right time.  I even tried to be prepared early by having a "buried" PD catheter that was supposed to easily be revealed at a moment's notice.  Didn't quite work out as the catheter was full of fibrin from non-use while it was buried and waiting.  So I still had to start with emergency hemo. 

[OneForTheBirds]

Time to book the ER, time to heal, time to train... they want to start me on a slow regimen at first.

[Charlie B53]

This is the right decision.  It is time to clear yourself of the toxins that have been building up within.   It is still going to take a little time once you get started.   What took this long to build up won't be cleared out immediately, a little at a time, but it will soon start to get better.

Let us know how it is progressing.

Take Care,

Charlie B53

[cassandra]

Good luck OneFortheBirds

Love and strength, Cas

[Michael Murphy]

If you are that miserable start now.  Even if you want PD eventually it sounds like starting now is a better choice.  Temporary hemo until you are ready for PD will at least make you feel better.  Starting one treatment does not preclude the other.  The one good thing about dialysis is its better than the effects of ESRD.

[OneForTheBirds]

My kidney function is falling rapidly and linearly, so it's easy to predict that I will reach eGFR6 by Halloween.  If I'm starting PD "ahead" of the optimal time it's only going to be by a couple of months.  Why wait for a catastrophe when the course of my decline is so predictable?

[kickingandscreaming]

"Optimal time" is when you are feeling crappy.  It's not about a number.

[Charlie B53]

I cannot think of any valid reason why you would NOT want to feel better.   Using Dialysis as a method to cleanse the toxins and not have the sickness just makes sense.

Why wait any longer than you have to?

I was tired of being sick and tired, and so swollen my legs leaked and kept getting infected.  So I got started as early as my Neph let me.  If I had know how much difference it make I might have tried to start PD even earlier.   I really made that much difference for me.