Ok time for a 6 month update: So after 6 months of PD dialysis, my kt/v score from my 48 hour urine collection, PD sample, and blood test this week came back as 1.43. This was after they increased my volume to 2300ml per exchange, 4 exchanges a night over 10 hours. So I'm still flunking that test. At 2300ml, I'm already feeling very bloated at night (pregnant is more like what I feel), so I don't think i can take much more volume, so it seems the only option is to increase the time, which means I would be on PD for 12 hours each night to see if that would get me over 2.0. That wasn't in the sales brochure for PD, but I guess that's what I have to do since i can't carry fluid during the day due to the extreme back issues I had during manuals. Any body know of other options I should ask my team about next month?
I feel fine. What happens if you don't meet the 2.0 kt/v goal? I mean what does it do to you, long term, if your blood isn't perfectly "clean" as long as Potassium, Phosphorus, and other numbers are in range?
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RonZone
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Yeah...not sure on that number either...I am not sure what criteria gives them a k/tv number...I guess it measures how much urine output you still have and if you are retaining fluid and how clean your blood is...too many toxins can start eroding your other organs...have they started you on any binders ?
I've been on phosphorus binders for a few months. Phosphorus is in the normal range. Potassium is a little high, but not a big problem. I need to increase protein a bit as well. I'm still fuzzy on how that whole kt/v formula works. I do know it's not super accurate and can fluctuate from test to test since it's based on one nights PD fluid sample (which can change from night to night)
Hi RonZone!, I’m sorry to read what you are going through, I’m surprised you had to collect urine for 48 hours. My husband has been o dialysis for 3 years and every time he has an adequacy test he collects urine for 24 hours.
Regarding your cycles, check with your PD nurse what kind of transporter are you, if you are a slow transporter (takes longer to get rid of the toxins) you should try to ask your Nephrologist to add a cycle, instead to add more time. Let’s say to have 5 cycles of 80 minutes dwelling each one. That will be a 9 hour treatment.
Also something that was recommended to my husband by his Nephrologist was to add 300ml at the end of the last cycle. He will keep this amount of solution all day long and be drained by the cycler at the beginning of his daily treatment. With this, ha has’t ever fail his adequacy tests. (The minimum required is 1.7
I asked about increasing to 5 exchanges per night, but they increased volume from 2000, to 2300 instead. So we'll see what they say about it next month.
Not sure why they do 48 hour urine collection, but that's what they always do at my center.
During manual training, I had extreme back pain when keeping fluid in me all day, so not sure that will work, though a reduced amount of 300 might work instead of the 2000 they were putting in during manuals that caused the pain (enough that I had to stop doing manuals after the first week). I can ask about trying 300 and see if they think it will make any difference.
my center only does 24 hour collection and 1.7 is the passing number. Maybe it’s the 48 hour that causes the issue. I was worried that I wouldn’t pass mine. Right now it gives me enough time to get ready and go to work.
I really need the itching to stop…I’ve scratched a few areas til they bleed and I don’t want them to get infected. And then there’s the coordination problem.
I'm clueless on the 48 vs 24 hour collection thing. That's great that it gives you enough time in the morning to get ready for work. If I have to extend this thing out to 12 hours that's going to be interesting to figure out.
Is the itching because of phosphorus? Or something else? That would NOT be fun. I have a little itching, but nothing like what you are experiencing.
Hi Horise63. You've wrote earlier about having vision issues. If vision is a lot better or worse in one eye, that also can give you balance issues. It may distort depth perception - that sort of thing. I assumed mine was hearing related, but it turned out to be vision. Nobody told me that could happen. Also, if your itching gets really crazy, our doctor prescribed child size Zyrtec which gave my hubby relief when it was really awful. Check with your doctor about this. Other times, I sprayed him down with Dermaplast. I hope you get a transplant soon so that this problem disappears.
I sure hope you get to the bottom of everything. Kidney failure is truly the pits. I remember my hubby sitting on the couch, stooped over, totally miserable - in his case, with restless legs and dialysis rash. Keep moving forward on things, something may well be out there to fix things. Crossing my fingers that you'll get a transplant sooner than later, too. My hubby's conditions magically disappeared then.
Sorry. I itch in spots from time to time, but I can't imagine itching all over. Other suggestions from dermatologists are: oatmeal baths and "ice until itch stops." Someone earlier suggested an ointment; however, it's difficult to see how you use it all over. Sounds as if you.need some type of oral meds. Best of luck. Positive thoughts and prayers
I guess all clinics are different but the standard pass is 1.7. My last test was 1.31!
There's lots of things they could try. Increasing the fluid can be counter productive as the fluid is pushing hard against the membrane and restricting the flow. The same thing with longer dwells. You can end with saturation of the dialysis fluid and then it reversing the toxins back into the body. So potentially shorter dwells with less dialysis fluid may work out better.
I would be happy with a 1.7 at this point I'm barely ahead of you right now, so we're in the same boat it seems. Though I feel fine. I am asking for 5 exchanges over 11 hours at night to see what that will do.
The kt/v It is the ratio of urea clearance or the efficiency with which the kidneys remove urea from the blood stream (K) multiplied by dialysis time (t) to the volume of water in your body. Something else you need to check with your PD nurse is to be sure that the lab has your accurate dry weight (this is the lowest weight after your treatment). Maybe that can be interfering with the result of your adequacy test. Regarding the itching, this ointment works great.
I do weight measurements before I start PD each night and put it into the cycler when prompted, when I have no fluid in me, so I assume that is my "dry weight". They are not recording my weight with fluid in me. Hey, be sure to reply to a post from Horsie67 with that itch cream suggestion. She may not have seen it.
Ron sorry you didn’t past the kt/v test you shouldn’t have to do 2.0 they would like for you to do 2.0 but I know my was 1.99 and Horsie was 1.9 and we both past . Wow 12 hours seem like a lot . How long is each of your dwell they are over 1.30 I know they line the dwell to sit at least 1.39 my like 1.40 . How much is your last fill I know I carry 1,000 they increase that and I think that what help me pass increasing my dwell and last fill so I keep that 1,000 through the day can you keep any fluid in with your back ? Wonder why you have to do 48 hour urine I only do 24 wonder if that make you have to have the 2.0 . Someone else mention what type of transporter are you maybe you should ask for the pet test that will tell you .
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Ultrafiltration getting reduced over time
