I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: MeatwadsKidneyCar on August 29, 2019, 02:55:54 PM
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Hello Everyone,
Long-time no talk! We have been busy but have finally gotten into a groove with the PD! If you could help me one more time I'd appreciate it. So far we have had several (I think in total about 5 or 6) adequacy tests. Now, with each one, they were either a-ok or required a slight program change. However, this last test required the biggest change. We were on dialysis 6 days a week for about 10 hours. I noticed my brother (who is the patient) was starting to get incoherent and extremely tired) on the day off and the following day. We brought this up with our clinic and his nephrologist repeated the test and the outcome was no more day off and longer dialysis.
After that change, all had been great. Not skipping the day off made my brother feel great and he was awake, alert, and hungry! However, it has been several weeks, almost two months I believe since the last change and he is becoming slightly incoherent again and more tired. Of course, I am going to tell the clinic. However, when we asked the clinic this question before they were hesitant to answer:
Is it normal for adequacy to continually decline? Does it ever level off? My brother either seems to hold stable for one Kt/V test and then the next one is generally lower and requires a slight change. Is this normal? And do any of you experience the extreme tiredness and incoherency when you are not getting adequate dialysis. Thank you.
P.S. In case you don't recall he is bedridden and his dialysis is unfortunately not based off his weight as he is unable to be weighed.
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Hi there,
Kidneys do continue to decline, but not at any predictable rate. My hubby had been on PD for a year, fairly stable, then last summer, wham, lost most of his residual. Now this past July, he lost even more. It's been like chasing a moving target getting the KT/V (and PD prescription) to stabilize because his kidneys just keep going downhill.
As far as the extreme tiredness and incoherency: Yup. It helps me to remember that dialysis can only provide between 10 - 15% of 'normal' kidney's toxin-removal function. If there's any residual left, those kidneys can help boost it some. A person can manage OK with about 25% or so. But as kidneys continue to falter, blood gets more toxic and that affects energy and brain function.
Also, as PD cycling increases, the amount of protein lost also goes up, so your brother needs more and more protein. That's something we're wrestling with right now, and contributes to the extreme weakness issue.