several questions for home dialysis patient

[mrart]

My husband has been on pd now for a year/he has minimal kidney function. It was at 13% when he was diagnosed. He went into the hospital for neck pain and had a dye study. That was May,2005. The dye study was the icing on the cake for his kidneys/he got sicker and sicker when he came home and was back in the hospital by July and on hemodialysis from then on til he began pd. He has had prolonged hypertension most of his adult life and i suspect this was the beginning of the problem even though tests never showed it. He had trace blood in urine for yrs when he was younger and dr wasnt worried. I kept hounding the dr (who i worked with at times) but he said it was normal, that tests were ok. He now is on one 2.5% bag during day and one extraneal for 12 hrs at night. Dr says he is one of the luckier ones. His bun and creatinine seem to be improving a little and the dr and my husband have discussed maybe dropping the day bag to see if he can tolerate. Dr just keeps saying lets see how the next labs are (24 hr urine, bun and creatinine.) He has extreme fatigue and sleeps a lot. If he skips a bag which he did Sat due to being stuck out of town and no bags, he gets in such a deep sleep, I can hardly wake him, which is the case as i write. He has been asleep 12 hrs now. I think his disease is still very bad and am afraid for him to quit any of the treatment. comment?
Also, he jerks and twitches during sleep and i notice it is worse if he skips a bag occas. He rarely skips only in emergency or if he decides to try to go without, it is the day bag he skips. He also has sleep apnea and last night it was so bad I had to keep waking him to breathe. This seems worse too when he skips a bag. He should be wearing the cpap but due to cost hasnt gotten it yet. Sorry to rattle but to recap 1-should he push to try to go without bags to test and see how he does 2-comment on jerking 3-apnea making condition worse 4-he itches worse when he goes w/o a tx-isnt this an indication he should not try to get off any bags
Thank you so much

[Beth Witten MSW ACSW]

You may want to post your message to our sister site that focuses just on home dialsyis -- Home Dialysis Central. You can find this website at http://www.homedialysis.org. There are message boards for PD patients. They are a great source of information and support for people on PD.

I suspect that your husband is hopeful that his lower creatinine and BUN values mean that his kidney function is improving. However, there could be many reasons why your husband's creatinine and BUN are lower. For example, creatinine is a byproduct of muscle metabolism. If he's been less active, he may have lost some muscle mass which could lower his creatinine lab tests. His BUN could be lower if he's not eating much protein either because he doesn't have a good appetite or because he's choosing lower protein foods, which patients sometimes do if meat tastes funny. Meat may have a metallic taste when toxins are high in the blood. Eating a lot of protein is important for PD patients because the PD treatment takes off a lot of protein.

I would suggest that if you're seeing these symptoms when your husband skips his daily exchange occasionally, this would indicate to me that he should not skip any more daily exchanges. It may even mean that his PD prescription is not removing enough wastes from his blood. Here are some questions you might want to discuss with his PD nurse and/or doctor in addition to telling them the symptoms that you reported here:

-- What is his remaining kidney function and how well his dialysis is removing wastes?
-- What is his albumin level? If his appetite for protein is good, his albumin level could be dropping which could put him at risk of infection. It's best when albumin is 4.0 or higher.
-- How is his hemoglobin and hematocrit? If he's anemic, that could make him tired, sleep more, not think clearly, and have low endurance. It's best when hemoglobin is 11-12% or hematocrit is 33-36 g/dL.