Introduction

[enginist]

With a GFR of 16, I'm either pre-dialysis or pre-hospice.  I haven't decided yet.  I'm hoping I can ride it out until the Vanderbilt-USF artificial kidney comes on line, maybe in two years or so.  It's probably a long shot.

[cassandra]

Welcome to the site  Enginist


    


Good luck, Cas

[kickingandscreaming]

 . It's impossible to know when your kidneys are going to crash.  I hope you can stall it as much as possible.  I was at 6% and still feeling quite decent.  Then I got pneumonia and that was it.  I too considered hospice and still do sometimes.  But I find that PD (peritoneal dialysis) does a pretty good job and I feel decent enough to keep on keeping.  I wish you clarity.

[Charlie B53]

Welcome to IHD Enginist!

My legs were so swollen and leaking at 20% along with multiple infections in those sores parking me in the hospital bed for a couple weeks at a time.  I gave in and started PD long before my kidneys made me 'sick'.

Fear of the unknown is the worst.

You can extend the time your kidneys do function by changing your diet somewhat making an improvement in replacing those high kidney load foods with those more kidney friendly foods.  Google the Renal Diet and see what I mean.

As for Dialysis, it really isn't that bad.  You do have to have at least 12 hours of treatment spread out in three sessions, but that gives you the whole rest of every week alive and able to do most of the things you enjoy about living with Family and Friends.  Fear of the needle can be the worst part.  Sitting still for the 4 hours of treatment can be a bore, but I take my laptop with me to read, watch movies, documentaries, or just browse whatever.  The time passes rather quickly, then I'm out and about again.

I highly recommend that you check out Kidney School.  Learn more about your kidneys, what is happening to you.  Then you will have a better understanding of what is going on, and what can be in your future.
http://kidneyschool.org/

PD worked great for me for years.  Til I screwed up and caused my own infection.  With PD I simply (Carefully) set up my Cycler with the solution bags, plugged my PD Catheter to it, and went to bed for the night.  My hose was long enough if I had to go to the bathroom it would reach that far easily.  In the morning disconnect, toss all the empty bags.  Done.  Not tough at all.

Like I said, Fear of the unknown has to be the worst part.

Hoping to hear much more from you.

Take Care,

Charlie B53

[Paul]

 
Hello enginist Welcome to the site.

As to "I'm either pre-dialysis or pre-hospice.  I haven't decided yet." That decision is, always, yours to make. But I urge you to go on dialysis before you decide. You may find after that, that you prefer to die. But if you go down that route without first finding out what the alternative is like, you are basically just killing yourself because you are afraid of the dark. That is not "making a decision about the value of your life", that is cowardice. A point that is often made here is that dialysis does not take away three days of your life, it gives you four days of life, every week. If you choose "death by refusal of treatment" you are not getting out of three days dialysis a week, you are getting out of four days of life a week.

As I said at the start, it is always up to you, no one else has the right to tell you what you must do, but I do urge you to try dialysis, try going down to four days from seven days, before you decide that is not enough and take the decision to kill yourself.

[Michael Murphy]

First nobody knows when you will have to decide, the tests and the numbers they produce are a good indicator of the eventual need for Dialysys but as to when not so good.  My advise is to find a renal dietitian and go on a renal friendly diet and push off the time to decide.  The numbers should not be used to start dialysis the deciding factor should be how you feel,  if you honestly feel good even with bad numbers it’s no time to start.
Second I consider dialysis not a life style bur a bridge to the future when better choices are arriving.   I only spend about 18 hours a week at hemo leaving 150 hours a wwek to have a life.

[Paul]

The numbers should not be used to start dialysis the deciding factor should be how you feel,  if you honestly feel good even with bad numbers it’s no time to start.

Don't agree. I tried that, but eventually agreed to a cannula and start dialysis at the doctor's insistence. The idea was that they fitted the cannula on a Tuesday, and I was to start dialysis on the following Thursday. I still felt fine at that point. However before fitting the cannula they did a routine blood test. Looking at the results the doctor sent me down to dialysis immediately after having the cannula fitted because the results were so bad that there was a chance I would not make it to Thursday. But if you had asked me how I felt, I'd have said "won't need dialysis for months", and probably still have been saying that when I died!

[lulu836]

I wholeheartedly agree with Paul.  How one feels as opposed to actual tested numbers is not even a contest.  Even now I have days when I wonder why I'm "burning daylight" sitting in a dialysis chair because I'm feeling really good.  After the treatment I realize that my body was fibbing earlier.  Always go with the numbers.  As a basis for needing to start dialysis......no contest......tests tell the truth.

[LorinnPKD]

Hi, welcome!

In many ways I feel loads better on dialysis than I did at 15-20%, especially when it comes to nausea and fatigue and foggybrainedness.  I just feel more at peace now.

Dialysis is definitely worth giving a try.  The thing about dialysis is you literally have to decide to do it every time, so that makes plenty of opportunities to decide.
  Oddly enough, I decide every time to keep going.

Good luck.  It does get better.