Well, we did our first “solo” nocturnal run last night, and it went great. I have to admit, it felt pretty strange having Michael hooked up to the machine when we went to sleep, but how wonderful to wake up in the morning and have dialysis done for the day. About 10:30 this morning, he reminded me (think big grin) that we’d just be getting ready to go to dialysis if we were still doing in-center! And the best part has to be that even after a nine-hour run, he felt so much better that he and our son decided to go Christmas shopping for a couple of hours this afternoon! If feels like a miracle! Certainly the best Christmas present I’ll ever receive!
I was wondering though, can anyone tell me approximately how much water you’re using on nocturnal? I talked to the water company today, and they have a sort of “penalty” pricing policy where the more water you use, the more they charge per 1000 gallons. I explained that while I understood that was to discourage water being wasted, our increase in water usage would a result of a life-saving medical treatment. Needless to say, that threw them for a loop! Ultimately, the person I was speaking to said that I’d need to get my first post-dialysis bill then write a letter asking for an administrative review of our “unique” situation.
As it stands now, the first 8,000 gallons are about $2.25 per 1000 gallons (over and above a basic charge of around $12). Between 8001 and 20,000 gallons are like $2.80 per 1000 gallons and over 20,001 gallons it goes to up like $3.30 a gallon. Right now our water usage is something like 4,000 gallons a month, so our bills are quite reasonable. And I guess even if we use an outrageous amount of water it would be unmanageable, but I was wondering approximately what to expect usage-wise.
Thanks guy! And for those of you who are just considering home dialysis–don’t hesitate–do it! It is even better than you’ve heard! (Of course it doesn’t hurt that we had a wonderful training unit with great staff who have been totally supportive and are available if we need them 24/7! Thank you everyone at Camelback Davita!!!)
of course the amount of water you will be using will depend on which system you are using.
I just started training with the NxStage which doesn’t use water but also is not used for nocturnal dialysis. for me the trade off is a better one since the Fresenius I was using would alarm every time I moved my arm, so in addition to better sleep, my water bill is drastically reduced.
anyway, good luck with nocturnal dialysis and your husband should enjoy a much more liberal diet.
We’re using the Fresenius 2008K–the Baby K–so we’re using huge amounts of water. Not that I’m complaining. We’re so grateful for this opportunity. I was just looking for a rough idea of how much we might actually be using.
I remember when I first started doing dialysis with a Cobe machine and wasn’t doing nocturnal…the city sent in notices about water usage and even the Department of Social Services went to investigate!!.. hehe lol!
Today with this NxStage machine and no need for reverse osmosis…water waste is a thing of the past…
For today’s conservation programs I think they’ve taken it more seriously than few years ago…still I think for the sake of our lives they can’t limit or i ncrease it more than what we can pay…well, with verification that your under Doctor’s care…
For a Fresenius you can expect between 300 and 400 gallons of water for an 8 hour run. I base this on the manual which said around 200 gallons of water for a daily run (not nocturnal). My first water bill was much higher than usual, but I haven’t gotten a second one which will include the full time on the machine.
I have written our water company for a break but haven’t yet heard back.
300-400 gallons is actually not as bad as I feared. (Of course I wouldn’t have wanted to do this when I was living in Phoenix and paying outrageously high water bills.) I was thinking though, that if a “normal” run uses 200 gallons, an 8 or 9 hour nocturnal run might use less than twice that amount because the dialysate flow rate is so much lower–300 instead of 800 in our case. But I guess only time will tell.
Anyway, that at least gives me hope that we won’t have to start selling blood (just kidding) to pay the water bill! LOL
Let me know how it works out with your water company. I’ll be keeping my fingers crossed for you!
Another place to look for savings is with your power company. I get increased electrical and gas levels for the minimum payments. I had to submit a form signed by my doctor. My bill still went up almost $100 a month but it would have been worse.
Cathy,
Thank you so much for posting these ideas of ways to get the best rates on power and water. I didn’t know that you could get special rates by getting a letter from your doctor. However, the home training nurse I worked with got the doctor to write letters to utility companies to tell them that home hemo or cycler patients had a life saving machine in the home. The utility companies put patients on a priority list for getting service turned back as quickly as possible when power was off or water service disrupted.
I don’t know if the letter served both purposes. However, I suspect that companies won’t tell you you can get better rates under these circumstances if you don’t ask for them.
Do I have it right that those of you on FMC machines doing nocturnal ( is that 3x a week?) are paying about $100 per month for additional water/gas/elec. charges?
Nocturnal is normally 6x a week although some people do 3x. I think most home patients are on a daily schedule vs. a 3x a week schedule. Right now I believe the Fresenius is the only machine approved for nocturnal dialysis although the other manufacturers are working on it.
Actually the doctor needs to fill out a form provided by the power company. In this case PG&E which covers most of California and parts of Nevada. I am also on the priority for power outage restoration and for notice of any pending repairs etc. that might result in a power outage. I would suggest anyone contact their power/water companies and simply ask if they have any rate adjustments available for life support equipment. Also if you have low income you can also qualify for reduced rates here, both water and power.