Two questions...

[tiredandthirsty]

Hello all,

I have a couple of questions/thoughts i wanted to run it by you experienced folks. 

As some of you know, my bloodwork this month has come out a bit off.  I have managed to sustain it within a decent range for 1 year 1 month. however, this past month the potassium went from 4.1 from the previous month to 6.1!  they did another check and it dropped to 5.8 and then another check the next treatment and it was 5.1 (this was as of yesterday).  however, now there is a thought that i am not getting enough clearance so they did a pre and post yesterday.  i'll find out the results tomorrow.  i am thinking if i am not getting enough clearance, the doctor will want to increase my time.  there is ABSOLUTELY NO WAY i will allow for that to happen.  i hate that place enough already, asking me to stay there longer is out of question.

so my question to you all is:

1.  are there any other potential reasons why clearance can drop besides not getting enough dialysis?  i mean my normal clearance for so long has been in the 70-76 range.  but last month it dropped to 66.9 or something like that. this is in addition to the sharp jump in potassium.

2.  the clinic goal is 70 for clearance.  if i am under that, and i feel absolutely fine to be honest, i don't feel any different at all, can they force me to increase the time to get better clearance? and if i say no, will i be "non-compliant" for my listing?  can they report back to my transplant centre where i am listed and tell them i am being non-compliant?

thanks for all your responses/tips/suggestions/advice in advance.

hope you are all doing well and keep on doing well forever.

[Angiepkd]

Hi T & T!  We seem to have a lot of the same issues lately.  My last labs showed my Kt/v at 1.78 and the goal is 2.0 or higher.  I was also worried they were going to increase my time.  My potassium and phosphorus were good.  When my nurse called to talk about my results, she mentioned that she had seen cases where patients blood was getting so clean that there wasn't a big enough difference between pre and post blood work.  So, I redrew the labs yesterday after having a day off.  We will see if those results are better.  I am not sure if this would apply to you, but maybe drawing labs after your 2 day break would help? 

I have issues with the whole compliance aspect of being listed.  I was labeled as non-compliant for not seeing a nephrologist every 3 months from the date of my diagnosis of PKD (age 17).  It took several meetings with the transplant gods to convince them that I was seeing my GP, controlling my BP and following the low-protein diet.  They eventually removed the non-compliant label from my file.  My point is that sometimes they can be reasoned with if you have a compelling argument in your defense.  So start working on that compelling argument, in case it becomes an issue. 

Best of luck to you and keep us posted!

[tiredandthirsty]

hi angie.  thanks for writing.

yes they did another round of pre and post to check for URR again yesterday.  i'll find out what it is tomorrow.  i am just trying to prepare for a fight against any suggestions of time increase 

this compliance thing is brutal.  i am not sure how it works but i have heard stories from the nurses where doctors have refused to sign on their paperwork because they are "non-compliant" in different ways.  i am assuming this paperwork eventually makes its way to the transplant centre and BAM the tag!! i will have to come up with a compelling argument against time increase that's why i wanted to see if anyone else had to deal with such issues.  i try to be super compliant in everything, have never missed an appointment, never miss meds, never missed a treatment (although recently i contemplate doing it everyday in the parking lot) etc. i would have to be tagged "non-compliant" for some bs like one month of off blood work, that too only potassium and clearance.  phosphorous, BP, fluid levels everything else is within acceptable range. 

my instincts, it seems as if, they are programmed to fight off any new thing they want to do to me.  i have not received a decent piece of news since 2009 and my mind is programmed now to oppose everything a person in a white coat suggests.  right off the bat.  i fought the TB test (i posted about it here a few months ago), i fought the EPO increase that i get every bloody month, i fought any new medications they wanted to drop on me, every bloody thing.  they probably think i am one of the most obdurate individuals they have ever met.  hence i am preparing myself to fight any time increase they might suggest in an intellectual way rather than just growling about it and being daft. 

[adairpete]

That's a hard one that I've struggled with, too.  I don't want to be labeled as non-compliant, but sometimes I think the nurses and dr (and even the dietician weighing in on a lab result) get so hung up on the numbers they lose sight of the big picture.  My first thought in your case is that one clearance level slightly below normal shouldn't dictate a treatment change.  My school of thought is more wait and see if we have a trend going.  Potassium levels are so influenced by diet, too, I've often had higher potassium levels because of stuff I've eaten (never because of not enough dialysis).  I also have issues with how they calculate clearance levels, so while the adequacy checks they do are nice I go more on how I feel than their kt/V values. 

[PatDowns]

so my question to you all is:

1.  are there any other potential reasons why clearance can drop besides not getting enough dialysis?  i mean my normal clearance for so long has been in the 70-76 range.  but last month it dropped to 66.9 or something like that. this is in addition to the sharp jump in potassium.

2.  the clinic goal is 70 for clearance.  if i am under that, and i feel absolutely fine to be honest, i don't feel any different at all, can they force me to increase the time to get better clearance? and if i say no, will i be "non-compliant" for my listing?  can they report back to my transplant centre where i am listed and tell them i am being non-compliant?

thanks for all your responses/tips/suggestions/advice in advance.

hope you are all doing well and keep on doing well forever.

Answer to Q1 -  If Kt/V is going lower as well as the URR, then you might want to have your fistula/graft checked out for recirculation problems.  If OK, then do what you need to do to cope and up your dialysis time by at least 30 minutes, especially if currently running <4.0 hours.

Answer to Q2 - What strength dialysate bath are you running on?  If 3.0 potassium, ask that it be lowered to 2.0.   Other than that, it might be time to become even stricter with your diet.  Oh, there's also a potassium binder, Kayexalate.  Careful with it though, wouldn't suggest regular usage.

EDIT:  Have you considered doing short treatment x5/6 weekly NxStage at home?