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Author Topic: How Long Can Your Kidney Function Last?  (Read 24323 times)
mallory
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« on: August 28, 2006, 09:57:53 AM »

At my last appointment, I had about 10% kidney function left.  I haven't started dialysis yet, and my kidney function has gone from 50% in January of 2005, to the 10% I have now.  It went fairly steadily down from 50% to 10%, but it's been stable around 10% for about three months now. 

I read on this site that dialysis replaces about 10% of your kidney function.  Can my own kidneys hold out at 10% for a long time if I'm careful?  I guess I know they will eventually fail, but how long could they last?  I asked my doctor, but he was very noncommittal, he said it could be a week, could be "a while".  Could it be six months?  Or a year?  Anybody have any idea?
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Sometimes the light’s all shinin’ on me;
Other times I can barely see.
Lately it occurs to me what a long, strange trip it’s been.
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Sara
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« Reply #1 on: August 28, 2006, 10:27:50 AM »

I guess it would depend on the individual how long they held out.  I think I remember us being told Joe's function was about 10% about a year or so before he started dialysis. 
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Sara, wife to Joe (he's the one on dialysis)

Hemodialysis in-center since Jan '06
Transplant list since Sept '06
Joe died July 18, 2007
mallory
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« Reply #2 on: August 28, 2006, 10:47:29 AM »

I know if I get another flare-up of the vasculitis it will probably take the rest of my kidney function, but, barring that, I am hoping that the 10% can hold out for a few months.  A year would sound really good, that's even better than I'd dared to hope for.  I wish I'd known some things a few months ago that I do now, like keeping my BP down and limiting protein, maybe I could have maintained a little more of the function I had left.
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Sometimes the light’s all shinin’ on me;
Other times I can barely see.
Lately it occurs to me what a long, strange trip it’s been.
                                  - Jerry Garcia
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« Reply #3 on: August 28, 2006, 12:16:46 PM »

At my last appointment, I had about 10% kidney function left.  I haven't started dialysis yet, and my kidney function has gone from 50% in January of 2005, to the 10% I have now.  It went fairly steadily down from 50% to 10%, but it's been stable around 10% for about three months now. 

I read on this site that dialysis replaces about 10% of your kidney function.  Can my own kidneys hold out at 10% for a long time if I'm careful?  I guess I know they will eventually fail, but how long could they last?  I asked my doctor, but he was very noncommittal, he said it could be a week, could be "a while".  Could it be six months?  Or a year?  Anybody have any idea?

I wish we could answer that for you however it really is just anyones guess even doctors can't give an exact time frame, all they can do is guess and you can hope for the best. I wish you the best and remember when you do start we are here for you every step of the way.
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« Reply #4 on: August 28, 2006, 02:03:01 PM »

Nope, no crystal balls with this illness.  Just hang in there and if you start throwing up everything you'd better go get your labs done to see what is going on.
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Black
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« Reply #5 on: August 28, 2006, 02:34:52 PM »

...  I wish I'd known some things a few months ago that I do now, like keeping my BP down and limiting protein, maybe I could have maintained a little more of the function I had left.

I'm so sorry that we can't do anything about that now; unfortunately you have a lot of company.   :( >:( If my husband had been advised by his doctor years ago to take measures we now know he should have taken, he too would probably have a lot more than about 10% function left.  :( There are things which can be done to slow the progression of PKD -- not one medical professional told us about a single one of them!! >:( >:D  I found all of the information on-line and most of it from forums similar to this.

Thanks to Epoman, we are now in a position to make a difference for those following us.  We can direct everyone to this site.  We can educate our families and friends.  We can tell every medical professional we meet that they should be actively educating their patients.  We can seek out organizations and support groups which actively educate the public about kidney diseases.  We can try to change the future for people who should not be as ill served as we were.
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Lorelle

Husband Mike Diagnosed with PKD Fall of 2004
Fistula Surgery  1/06
Fistula Revision  11/06
Creatinine 6.9  1/07
Started diaysis 2/5/07 on NxStage
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« Reply #6 on: August 28, 2006, 10:11:22 PM »

The fact that you have even a little function left is great. Enjoy it while you have it, however long that may be. I would just be sensible with your diet and fluid intake if applicable. I was in your boat the first time I was diagnosed. By the time I got diagnosed I think I had 50% function, then only a couple of months later it was down to 10%, and then 5% at which time I started dialysis. I started dialysis within 3 months of being diagnosed. During the "10% phase", I was put on the renal diet and a 750ml fluid restriction, just to help preserve any function I had left, and so as too not put too much stress on the failing kidneys. This was some time ago now, things may have changed, plus everyone is different.
Keep an eye on yourself, and if at all you start to feel unwell in between appointments dont hesitate to seek help. I would also recommened you get yourself a BP machine if you havent already, if you want.
All the best  :)
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Mike
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« Reply #7 on: August 29, 2006, 12:19:08 PM »

Hi,

Like the others have said it is impossible to say  :(

I personally feel that dialysis should be started as early as possible not waiting for your function to drop so low. The time to start dialysis at least in the UK isn't purely based on your function alone. They look at your complete blood chemistry and if you feel your need to start earlier that too is taken into account. I myself started at about 12% but originally I was told transplant list at 15% and dialysis at 10%.

Also lastly starting on PD will help keep your residual kidney function for longer unlike HD which due to the time between sessions puts a much greater stress on your kidneys. You want to hold onto that as long as possible! I was lucky that I never had a fluid restriction due to this and my residual function barely changed right up to transplant 6 months ago.

I'm not sure what they mean about dialysis taking 10% of normal kidney function? If they mean everything that the kidney does I guess that is probably true but if you just look at cleaning the toxins I would hazard a guess it is a fair bit higher than that.

Hope you are feeling as well as you can be

Mike :)
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mallory
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« Reply #8 on: August 29, 2006, 12:54:13 PM »

Thanks, everyone.  I know there's probably no way to tell how long my kidneys will last and that it's very individual, but I'm sure hoping for the best.  I guess I feel a little like Hephziba said in one of his posts, when I was first diagnosed I didn't even know what kidneys did or that I had a peritoneum.  You just have to learn so much, so fast.  I do have a BP machine, and I'm supposed to watch the salt and limit protein.  When I do start dialysis I'm doing PD, so that will be good.  I just keep hoping that I can hold out a little longer...
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Sometimes the light’s all shinin’ on me;
Other times I can barely see.
Lately it occurs to me what a long, strange trip it’s been.
                                  - Jerry Garcia
Smokey
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« Reply #9 on: August 29, 2006, 08:52:28 PM »

I have been going on 10% kidney function for about 4 months now, prolly a little longer, I was just diagnosed in May as stage 5.As to how long you will keep your remaining kidney function, I imagine a lot would depend on what actually caused you kidney problems in the first place and if that has been or can be rectified.
I know what you mean by having to learn things fast, I am still learning things everyday...
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Panda_9
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« Reply #10 on: August 30, 2006, 04:06:56 AM »

The hospital here was doing a study on the effects of starting dialysis "early" or "late". You had the option of signing up to the study, but you werent told if you were going to be an early or late starter. I said stuff that I was dialysis asap. So they got me onto PD asap, and it didnt make a bit of difference. I have never felt so sick in all my life as I was on PD. They told me starting PD early while I still had kidney function, would cause the kidneys to shut down quicker, as they didnt have to work as hard due to the dialysis taking their work load.
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