Not sure Dad needed dialysis

[LDychef2k]

Hi, I have been lurking for almost six months, and finally decided to join so I could get some expert input on my Dad's situation.  We sure didn't get any from the doctors. 

Dad was diagnosed with renal failure in early 2010.  The nephrologist told him that his kidney funtion was 23% (one kidney failing beause of diabetes mellitus and the other was completely filled with a staghorn calculus.  He told Dad that when his KF got to 20%, he would need dialysis.  So, in October 2010, he started 3x a week, four hour dialysis.  He hated it from the git go.  Complained every single day.  Dad is an abusive man with serious rage issues, so his complaining took a rather powerful path. 

Six weeks ago, Dad decided to stop dialysis.  The folks and the DU told him that he would die in two weeks without it.  He didn't care.  He went on Hospice.  And we started looking for end of life signs.  None occurred.

After six weeks, he is still urinating, has no symptoms of toxicity whatsoever.  He is tired and weak, but he also has leukemia so that is to be expected.   

Hospice did blood tests, and his creatinine was 2.9.  It has to be 10 for him to be kept on hospice.  We had some old laboratory work on file, and the highest result in the past year was 3.4.  According to Hospice, his current BUN and creatinine are "within normal limits". 

I am trying to figure out if he really needed dialysis in the first place.  Two months before he started it, his creatinine was 5, so on that basis it does look like he had some renal failure.  And since his values then improved to 3.4, perhaps dialysis helped.  But now he has been off dialysis for six weeks, the creatinine is 2.9, which falls within the laboratory range of normal. 

So, the reason I am posting this is to ask if anyone has seen this kind of thing before.  We are completely stunned at the turn of events.  I mean, Hospice told us he would be gone in a week, and we had family come from all over the place to say their good byes, and the emotional toll is serious on us all.  And now his renal function is normal?  It doesn't make sense.  Can anyone give me clarity or direction? 

[jbeany]

Wow, they started him at 20%?  Granted, no one feels fab at 20% of function, but I guess the average neph doesn't start talking about fistulas until about 15 to 20, and they rarely start anyone until they are a lot closer to 12%.  The latest studies show there's little reason to start super early.

On the other hand, it looks like his function is bouncing up and down.  You'd need to know exactly what it was when they told him to start, and most likely need to know how fast it was trending down.  His other medical problems and treatments he may be getting may have temporarily lowered his function.  It may have seemed like the best idea at the time, even if his function bounced back.  That's not unheard of, just uncommon.  Google Art Buchwald - they gave him a week to live to, and he made it for months and months after that.

[KarenInWA]

I just have one question - how is a creatinine of 2.9 considered normal?  Granted, it is not so bad as to need dialysis, but normal? It is well within Stage 4 CKD, and needs to be monitored. Just a thought...

KarenInWA

[RichardMEL]

20% GFR? The ONLY reason I can think of you might consider starting someone on D at that kind of level is if they had actual physical symptoms like nausea, vomiting, etc. If not, and sounds like he didn't, I can't honestly understand what that doctor (was it a neph?) was thinking....

I do caution you though - while it's flattering to say you're after "expert" advise from us - we are expert at experiences, but only a very few members of IHD are actually trained medical professionals andeven then the full extent of your dad's medical situation isn't really known. I'm not trying to put a blanket on anything here, just trying to remind you that you will find plenty of opinion here, and probably most of it spot on   but bear in mind that most of us come here with more experience and "on the job wisdom" than medical degrees.

It sounds like your father didn't need to be on D. A Cr of 2.9 is obviously abnormal, but probably consistent with the ~20% function level. Certainly seems a bit low to be panicing about D.

I wonder if that original doc saw your dad's Cr dropping over time at a rate that saw a projection to down to 10% or less in relatively short period of time, and thus felt it best to get onto it sooner rather than later - but even so that sort of thinking should have been explained in my view.

I gather since the hospice found his Cr at 2.9 and they only accept 10+ that they won't allow him to stay or he's out? Probably a good thing. Perhaps time to seek a seconr or third opinion and to ask questions and get reasonable explanations for any medical recommendations made.

On the surface it seems like you're right that perhaps he didn't need D - however he probably should be checked on a regular basis, say every month or two to see how his labs are going because they can fall sharply at any time.

[Whamo]

Watch the potassium levels. 

[willowtreewren]

As Jbeany stated, regaining some function during and/or after dialysis is not unheard of.

There are other threads here that report similar experiences. For now, be glad that your dad is hanging on, but monitor his levels closely.

 

Aleta

[lmunchkin]

I do caution you though - while it's flattering to say you're after "expert" advise from us - we are expert at experiences, but only a very few members of IHD are actually trained medical professionals andeven then the full extent of your dad's medical situation isn't really known. I'm not trying to put a blanket on anything here, just trying to remind you that you will find plenty of opinion here, and probably most of it spot on   but bear in mind that most of us come here with more experience and "on the job wisdom" than medical degrees.

RM, I Resemble that remark!!!!!!       But I guess the real point here is that eventually he will be on D to sustain life.  At least you will know what its about, but try to hold off as long as you can, but remember, this stuff can take a dump real quick, so do not let him get too sick or take it too far that he can't come back.  Be diligent and assertive in regards to his health He may be too weak to Pay attention because of all this Whirlwind around him

God Bless,
lmunchkin
 

[LDychef2k]

Thank you all for your kind responses.  Dad has "fired" his nephrologist and is ready to die, from whatever cause.

He has leukemia as well, and was receiving teatment at dialysis (he didn't want to  go to any other doctor's appointments, so they coordinated care), and thus his leukemia has worsened.  This may be what keeps him on Hospice. 

[lmunchkin]

Oh this is so hard to hear!  But I do understand his decision! My father had prostrate cancer and went for chemo & radiation treatments. I think he did okay for a time, but when they found it on his spine, He gave up. It was difficult on us kids to lose him, but we all understood clearly!

Spend every ounce of time with him that you can.  He loves you and Im sure wants all to be by his side.
I will be thinking & praying for you & your family,
lmunchkin