Just how well can a dialysis machine keep you

[retrorod]

I have introduced myself in the appropriate forum so will not repeat what I have said there.

 I have been unwell for a year or more, and I have now been diagnosed with renal failure. Blood testing has revealed a fairly quick decline in the GFR from normal (90?) to 57, and a further quick decline to the current 31.

Two questions:

1. Is there an arbitrary point that one must accept dialysis?

2.  Given one's health probs before dialysis, does the sessions on the machine make you feel really well again, or is it a partial wellness?

Thank you.  RR

[MaryD]

My GFR hung around between 25 to 30 for about 4 years during which I just felt a little tired.  It then fell to 10 in 18 months when I felt mildly nauseous and had mild low-grade headaches and fuzzy brain, but was coping with no difficulties.  I am retired.  My neph felt that I would need to go on dialysis within 12 months, but the following visit decided that I should start training straight away.  My numbers were still the same except for my PTH levels which had shot up.  In Australia, Sensipar is only allowed to be prescribed if you are on dialysis, so basically I started dialysis when I did in order to control my PTH levels by using Sensipar.  I've been doing CAPD for 18 months now.  I certainly feel much better now than I did before, though my GFR is still hitting 10 from time to time.  Best thing is the fuzzy brain improvements.

I understand that any form of dialysis only does about 10% - 20% of what your kidneys did when they were healthy.  Dialysis makes you feel partly well again.  PD apparently is gentler on your kidneys and should give you a longer time with some kidney function.  It also means that your diet is pretty liberal (except that you have to stuff yourself with protein).  It's main drawback is the possibilities of infection, so your exchange area needs to be kept very clean.

If your GFR is 31 your should still be able to put dialysis of for sometime yet, unless the rate of your kidney decline increases.  Are you following the renal pre-dialysis diet?

[amanda100wilson]

I agree with the other poster.  the onlythi gmthat I was add, is that since you forget what feeling well feels like, the fact that,you are feeling well compared to the  time immediately pre-dialysis, that it will not really matter.  the only waymthat I found this out, was when Imhad a transplant.

[Mr Pink]

During the last stages of my downhill run, I was told that doctors look at "the big picture," so it's not exclusively determined by GFR, although anything below 10% and they're looking pretty closely at "the big picture." When i checked myself into hospital, tests revealed that I was down to 4%, so the big picture had been looked at for the last time. I remember one of my doctors telling me that when you fall below 15% "you can feel it." He told me this when I was around 22%, a time when I could already "feel it." Tiredness, leg cramps, gout... it all sucks big time. I tried to put on a brave face and tough it out, but the fact was that my kidney's were failing fast. I felt noticably better after my first dialysis, and continued to feel better with every treatment. On the eve of my 75th dialysis (I'm keeping count so I can celebrate the milestones), I feel better than I have in some years, although I do get a bit tired sometimes. My clearance is as good as it will get whilst on dialysis. I reckon I'm dealing with my situation pretty well, with an obvious view to eventually having a transplant. And when that happens, I have a whole list of things I'd like to do. Good luck.   

[Henry P Snicklesnorter]

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[WishIKnew]

partial well, never fully well in my opinion.  On PD I felt much better than I did on hemodialysis.

I started dialysis when my GFR was 8

I welcome you and wish you the best!  Hang on to that 31 as long as you can!

[retrorod]

Thank you one and all for your comments, I feel better informed already.

As described by Bluey and Curley (where the hell did you pick up a name like Henry P Snicklesnorter?)  I nearly fell off my perch just being told I had renal failure. It just came out of left field and the shock really rattled my chain, I admit.  I guess some learned person may tell me more when I  attend a specialist units that deals exclusively with kidney failure. I have my first appointment on 22nd April, not too far away now.

It's a relief to know I may avoid dialysis for a short while at least.  I will do what I can to hang onto that 31.  Thank you all again and I'll keep an eye on these forums for more education about this kidney business.   RR

[jbeany]

You can start when you want to, although be aware that the slide is so gradual, you don't really know just how bad you are really feeling until you start feeling better.  Also, the first month or two on D is really tough to get through for most people.  Don't wait until the last possible second, because having no reserves makes it worse.

Another thing - the machine can only do so much.  Part of it is what you do off the machine.  Fluid restrictions are a huge part of it - and one of the hardest to get used to.  Also, keeping track of what your labs say, and adjusting your diet accordingly makes a difference, too.  Lastly, do not forget to keep track of your hemoglobin levels and be prepared to fight the docs for treatment to get you to an adequate level.  While the most common meds (epo) to raise hemoglobin levels are restricted, you will need to learn all the other options, like IV iron, vitamin shots, and nutritional supplements that can help.  Fighting the chronic fatigue that goes with low hemoglobin levels can make a huge difference in how you feel on D.

[amanda100wilson]

Not everyone is on a fluid restriction when they start dialysis.  If youmhave residual renal function,do PD or daily hemo, you may have little or no fluid restrictions.  It is not a 'one rule, fits all'.

when. you start may also co e down to being symptomatic.  I was getting severe cramp from calcium imbalance so they started me at early.

[Jean]

Cheer Up!!!! I have been in 4th stage since 2007!!! Started with a GFR of 29 and now it is down to 23. Not too bad. Just watch what you eat and maybe you could stay in your current stage a good long time!!!!

[retrorod]

Thank you again for the additional info.  I am much more optimistic since finding this forum, as my first reaction when told my kidneys were in trouble was "to hell with dialysis", I'll just let nature have her way.

Yes, its does seem that one's experience can vary dramatically depending on compliance with the various food and drug regimes that are recommended.  My moment will come with the reduction of salt.  I love the bloody stuff and my intake would be enormously above the recommended levels.  I'll deal with that just as my many predecessors have, most likely by compromising. 

Many thanks once again to all you good folk who are so willing to help.  Henry P Snicklesnorter, you've not revealed how you ended up with a user ID that most users will need the cut and paste function to get right.

[jbeany]

Not everyone is on a fluid restriction when they start dialysis.  If you have residual renal function,do PD or daily hemo, you may have little or no fluid restrictions.  It is not a 'one rule, fits all'.

Yes!  This is important to remember.  My favorite piece of advice for newbies is that any sentence the medical personnel start with "ALL dialysis patients...." is usually followed by some level of BS.  None of us are stamped out of mold, no matter how much they'd like to squeeze us into one. 

And I was at 27% function when I was first diagnosed with kidney failure - and didn't start D for almost a decade.

[Henry P Snicklesnorter]

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[willowtreewren]

Henry P Snicklesnorter, you've not revealed how you ended up with a user ID that most users will need the cut and paste function to get right.

Here Y' go ...........................




RetroRod  has askedthe question, So I suppose I orter,
Reveal why I am Henry P, Of the House of  Snicklesnorter.
It goes way back in history, Lost in the mists of time,
When the world was first endowed, With this surname so sublime.
 
On down through the centuries, Ancestor’s all were proud to carry,
And tradition was, the firstborn son, was always christened Harry.
Now my grandfather had woo’d a girl, And he had won her heart,
But his proposal was rejected, right from the very start.
 
“Although my heart belongs to you, I fear I must say no,”
“I’ll not be known as Mrs Harry Snicklesnorter, everywhere I go.”
“But change it sir, to what you will, And to marriage I’ll agree,
“I’ll promise you a life content, If you’ll do this for me.”
 
“I say old gel,” young Harry said, “I’ll be glad to make the change,”
“For to tell the truth, I much dislike, this name that seems so strange.”
“I’ll choose a name tomorrow, my resolve it will not falter,”
She replied, “Why not surprise me and tell me at the alter?”
 
And so the wedding day arrived, And what name would they carry?
He said, “I’ve chosen Henry, I never did like Harry”
And so she kept her promise, and the two of them were wed,
But call her Mrs Henry Snicklesnorter, - just the look would strike you dead.
 
So tradition has continued, and since then each first born male,
Has always been named Henry, so now you know the tale.
And what about the “P”? you say, Well then since you wish to know,
It’s silent, as in swimming, or bathtub don’t y’ know.
 
Henry P

 

Loved it!

[Desert Dancer]

How well you feel depends on the modality you choose. I do nocturnal home hemo and feel damn near normal; I can do 8 hours of heavy yardwork, dance, work when the opportunity arises, etc. Nocturnal dialysis has outcomes comparable to a cadaveric transplant but without the effects of immunosuppressants. The only thing holding me back from feeling completely healthy is a separate medical issue altogether that has no connection to dialysis.

Just realize that when you read all these horrible - and true - facts and statistics about dialysis, nearly ten times out of ten the ill-informed author is referring to conventional in-center dialysis. If you opt for a superior modality none of it will apply to you.

[amanda100wilson]

Henry, loved it too!