I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: justagirl2325 on June 09, 2016, 02:31:17 PM
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We've just had our semi-monthly clinic visit and have been told that all his numbers - in the word of his neph - "suck." Phosphorous too high, potassium too high, not enough clearance, blood sugars suck, calcium, vitamin D, iron, hemoglobin - you name it, they all "suck."
Why? Not enough dialysis. When he started at home late 2014 he was doing 3 days * 4 hours. He switched to nocturnal and got longer sessions but didn't like it one bit as he couldn't get a decent nights sleep. Back to evenings. Which were fine when he wasn't working. His latest job - that coincidentally started 10 weeks ago - sees him working 12 hour days M-F and then 8 hours on Saturdays and Sundays. So you can see why his dialysis has dropped. I have resorted to begging him to come home at night at a decent hour to do dialysis. We had one session where he got on at 10pm and I feel asleep and let's just say I almost lost him.
Today his neph suggested short daily home hemodialysis - defined as at least 5 times a week - for 2.5 to 3 hours a session.
We have to go back to clinic in a month (neph didn't want to wait 2 months to recheck his numbers). I would like him to consider this. 2.5 is very doable for me, even late at night.
Wondering if anyone here does short daily.
When we life clinic today at 1pm he said "I have to cut back my hours at work" and "I think I will go home, I don't feel well" and it's 5:30 now and he just called me from work. :Kit n Stik;
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How long of trial did he give nocturnal?
I have work weeks similar (60+ hours, not 70+) the only way I can do it is nocturnal. I switched to nocturnal after doing short daily with NxStage, I found nocturnal to be far far easier. I do it all myself, it would be easier if someone else was setting it up but that is putting a lot on your plate.
I should add I can only grind that level of work for a week or two before I have to scale back, after a couple weeks without a day off I need a couple days off to recover. Working everyday is not sustainable.
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Sounds like the neph is trying to help by offering a plan that might be easier on both of you. My husband uses the NxStage cycler. He does 3 1/2 hour treatments 5x a week using 30 liters of dialysate. We make a 60 liter batch of the dialysate using the NxStage Pureflow machine (lasts for two 30-liter treatments). The Pureflow takes about 7 hours to make the dialysate so we hook that up at nite and it fills/mixes while we sleep. Then we do his treatments after work the next evening. He gets about 17.50 hours of treatment every week. His labs look pretty good and he is still feeling up to working a fulltime job. Of course, everyone is different, some may need more/longer treatments while others shorter. We are still too chicken to try nocturnal. Afraid we'd sleep through an alarm or have a needle pop out. Or that by the time we woke up to respond to an alarm his blood would be all clotted. We were offered the 2.50 hour plan which time-wise would have been great but we felt he probably wouldn't get enough clearance and start feeling poorly so we stuck with the 3.50 hour treatments. Don't know what kind of clearance the bigger machines give on short daily. Maybe more than NxStage. Would definitely give the neph's idea a try. Hope things go better for you guys.
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5x/week, 3.5hours, 40L NxStage here. Absolutely love it (compared the alternative). Unfortunately, I need the 40 lactate SAKs, which are not available in a 40l size of I have to drain 10l off after treatment so I can setup the next SAK. I was getting 40% URR on 30L and was just at the edge of acceptable, so I asked the RN to move me away from the edge, hence the 40L Rx. I now get 46%-47% URR. I am very fortunate that my clinic is not into micromanaging the cost of supplies for home hemo patients.
I would like to try nocturnal again, but I had serious insomnia with it, probably for fear of something going wrong. I don't find the NxStage alarm sufficient to wake me, so I have taped a photocell over the red light by the alarm, and have this wired to trigger a relay which turns on a light (when doing awake dialysis) or a loud buzzer (when I was trying nocturnal). This optical coupling allowed enhancing the cycler alarm without any modification to the NxStage equipment.
The famous Mr. P is fortunate to live in an elightened area where they do not insist on care partner signoff and allow solo dialysis.
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Count me in as another person who did short daily home hemo. My schedule was 3.5 hours - Monday, Tuesday, Thursday, Friday, Saturday. Wednesday was my mid-week dialysis break and Sundays were work and dialysis free.
I also worked full time M-F as well. It didn't leave a lot of time during the week for anything but dialysis and work, so the housework suffered (oh well).
All of my lab values looked good except for hemoglobin which was always a bugaboo for me.
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We do 4 days a week at 3 hours 20 mins per session...which of course means MUCH more time than the actual "treatment". It's grueling, for both of us. Hubby is the one on the machine...I'm the one setting up, tearing down, and repeating....I stick him, pull needles....he holds his own sites.
If I didn't have to do an entire new pure-flow sac every time, I might be ok with adding another day...but we use 50 liters every session, so I have to start a new batch every time.
Is this better than being "in center"? I think so...for my hubby, and many times, for me, too. BUT...it's tiring and seems never-ending. This has been a bad couple of weeks, so perhaps I'm jaded.
Before he started dialysis, we had read about 2 hour home sessions, 5 days a week......HA! Our doctor says that NEVER happens...so we're doing what we're doing......
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Maybe once and a while your hubby could go in center for a week to give you a break?
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We do 4 treatments weekly, at 3 hrs, 20 mins per...but of course, it takes about 4 hours total, from put on to take off/tear down of the machine. Longer for me, since I do the pure flow set up, room cleaning, etc.....I was wondering how many hours per week most folks who are NOT on nocturnal do.......we are at 13 hours weekly....."in center" is only 12 hours....
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Maybe once and a while your hubby could go in center for a week to give you a break?
Or he could learn to do more for himself. I am on home hemo, and although I officially have a partner, I do it all myself - inventory management, setup, maintenance, teardown, needles in/out, etc. I head upstairs at 8PM and am out of my wife's hair until Midnight. She generally visits me only if she has a computer support question in which case I remote to her via TeamViewer and deal with it.