How far would you drive to get home hemo?

Hi Evelyn,

I’m Michael’s wife (the new trainee) from the Scottsdale Davita unit! Michael was the guy with the beard, sitting next to Martin.

I’m so glad to hear things are going well for you! Christine’s going to be ocming to our house in Prescott Valley for our first at-home run this Friday. Actually, it was supposed to be Thursday, but the water cultures didn’t come back in time, so we got a little delayed. But the machine’s sitting here ready to go and we’re MORE than ready!

So how are you feeling after three runs at home? Do you think you feel better on nocturnal? Michael’s convinced he felt better after just two nine-hour runs at the unit, so I’m feeling pretty optimistic.

Anyway, when I saw you online, I had to say hi. I hope you continue to do well. Best of luck,

Deb

Hi Jane!

I totally agree with Evelyn–our training at the Scottsdale Davita unit couldn’t have been better. Michael and I finished in four weeks and one day and are happy to be homeward bound! LOL

Regarding the buttonhold technique, while Michael sort of has a fistula, it’s an unusual access in that it was actually a graft using a cadaver vessel, and the doctors who are experts in this had no experience using the buttonhole on this type of access. So, Michael’s doctor decided it was safer to just continue doing regular cannulations. I was kind of worried about it at first, but after a few times, it was so much easier than I expected.

We feel so fortunate to have found the Davita At Home program–although actually I guess it kind of found us. We’d been searching for an at-home hemo program for two years with no luck, then someone from the Scottsdale unit visited Michael’s doctor in Prescott, Arizona (about 100 or so miles from the unit). Coincidentally, I’d been talking to the social worker at our unit, who mentioned to the charge nurse, who mentioned it to Michael’s doctor, who’d just gotten a visit from Davita… And it all just kind of fell into place. Literally within a month of our receiving the info packet, Michael was scheduled for training! Truly, we felt like it was the answer to many, many prayers.

Deb

Hi Deb, im doing well, after my third treatment at home I felt better than I had in a long time, the first two not so much just because of issues getting used to the ro machine noise, its in my room Im in an apartment so the first two nights I didnt get much sleep. My experience echoes yours I waited two year too so the Lord has truly blessed us to get in the Davita unit. Christine, Tydi and all the staff were great. You and Micheal and Martin and the other patients are all on my prayer list, but Im confident that you will see the benefit in nocturnal hemo. I belive with some of the other inovations coming in the next few years that soon those of us with ckd/pkd will be able to live as close to a normal life as possible. God Bless

Evelyn

Deb and Evelyn,
Wondering why you chose 3x a week nocturnal over daily dialysis? With 3x a week, I would think you still have issues with fluid? What are the advantages of 3x week nocturnal over daily dialysis?

Hi Jane,

Actually, Michael and I considered daily dialysis, but Medicare won’t pay for it. On the other hand, we’re told they’re quite happy to pay for every other day nocturnal. So… Voila! We choose nocturnal!

However, we also kind of liked the idea of being able to do it at night. And the set-up and clean-up is enough work that I’m glad to only be doing it every other day.

Deb

I agree with Deb, the set up and break down of the machine would be a hasstle to do everyday for a two hour treatment, I think you get more bang for your buck with every other day nocturnal your getting anywhere from 24-40 hrs of dialysis per week as aposed to 14-20 hrs total daily

From my understanding after speaking with an AKSYS co. rep, the dialysis companies get paid the same rate by Medicare whether the patient is on traditional hemo, daily or 3 night nocturnal dialysis, and the dialysis companies is not supposed to be predjudicial against Medicare patients. There are virtually no costs to the unit for labor, elec. water except about a $3 cost per extra txs for needles/gauze. So the units that are doing daily dialysis with AKSYS (DaVita has 2 units using AKSYS) are eating the minor costs as they are putting patient care first. Would be a different situation with the FR2008K if patient is using a new dialyzer each tx?

Would depend on the machine, too, as to how much bang for the buck one is getting. First, can anyone say they feel better with more hours of dialysis (3x nocturnal) vs daily txs of half as many hours? And the time to set up machine and tear down is a factor- is it the NxStage that cuts down on the set up time?

aksys, nxstage and the machine we are on are 3 different issues, aksys setup is different and I hear they can reuse dialyzer etc. nxstage uses a cartridge that you drop in the unit, the fresenius 2008K is just like the machines in the unit and have to have tubing and dialyzer replaced with each tx. as far as the units eating the cost, not sure what the issue is but Im sure each unit has evaluated which machines they will support, I dont know of any yet that will let the patient pick one of the few that are out there, I think its been up to the unit which machine(s) they will evaluate.

Some units offer more than one type of system. I would guess that Fresenius units only offer Fresenius systems for example, but independent units like mine are using all of them and you do have some say in which system you use.

I’ve been doing short daily home hemo for three years, for the last two years on the Aksys PHD. Since being on the Aksys I’ve participated in two studies. First I dialyzed for a month doing every other day 8 hour nocturnal dialysis; the second study was dialyzing six days a week dialyzing every night for 8 hours. I found every other day 8 hour dialysis to feel very similar to daily short (2.5 – 3 hour) dialysis. I found every day 8 hour dialysis to feel better than daily short in the sense that I stopped all binders and as Cathy has posted elsewhere I needed to increase potassium and phosphorous in my diet.

The one thing about nocturnal was that I felt more tired. I have to get up a 7am to start my day and with the nocturnal that meant that my treatment had to end at 6am, which in turn meant that I had to start getting ready for treatment at about 8pm. This schedule did not work well for me, I just was not getting enough sleep. I’m just talking about me and the non-dialysis constraints in my life. Once the Aksys gets a heparin pump integrated with the machine I expect that I will mix eight hour runs into my weekly regime but for now I go the short daily route.

As far as set up and tear down - for the Aksys it is minimal – none before hardly and five minutes after.

My experience is the same as Cathy’s. I could choose the B Braun or the Aksys PHD. I could choose three days a week with a paid helper (Braun only), or daily whatever length on either.

Deb and Evelyn,
I checked the DaVita site and got in, no problem. There is a DaVita at home in Philadelphia, about 3 1/2 hours from where I live. Left my info on their site to get the particulars.
When I spoke to our MD tonight while hubby was dialyzing, he said he would support us. Took a little convincing,but he did finally agree. Now I’m told the dialysis center we’re at did have a home dialysis program several years ago, but it’s been discontinued. We go at night, so there was no management to talk to. I’m wondering if I can badger someone into doing the training there. Half hour drive is better than 3 1/2, but if I can only get what I want in Phillie, off we go.
Thanks for the information. I’ll keep you posted.
Deb, how was the first night run for you? Anxious to hear.
Pat :smiley:

Having your husband’s doctor say he’s willing to support your husband is a huge step in the right direction. If your husband’s clinic trained people to do home hemo before, it should still be Medicare certified to offer home hemo. It’s possible that the nurse who trained patients before is still on staff at the clinic. If not, all it would take is one of the experienced nurses who routinely trains technicians and feels comfortable training non-nurses to train you and your husband. Before talking with anyone, read about home hemo on Home Dialysis Central so you know what is involved. Make sure you’re willing to commit not only to training but to staying on home hemo. One of the considerations that clinics have when thinking about home training is the cost of training and set up. It usually takes several months to a year to recoup those costs and your clinic will want to know that you’ll commit to home dialysis at least that long.

I’d suggest you and your husband make an appointment to talk with the administrator (if possible with the doctor). Tell them that you and you husband are committed to doing home hemo. You’re so committed in fact that you’re willing to drive 3.5 hours to get training if you have to. However, you’d prefer to get training and follow up at your clinic if they’re willing to train and support you and your husband. It’s possible that if they think there’s more interest that will encourage them to do it, plus they may fear that if they lose you, they may lose other patients who learn about home hemodialysis.

If your clinic is not ready to start a home hemo program, check out the other clinic. Talk with their training nurse, other staff, and home hemo patients. Even though they’re farther away, once training is completed, you won’t need to go as often. If your clinic does re-start its home hemo program, please ask them to alert us by using the Edit a Listing in Home Dialysis Central’s Find a Center database.

Hi everyone,

Just want to put my two cents in! I am/was a patient at the Philadelphia DaVita at Home program. The doctors there are awesome! Especially Dr. Glickman. I would still be a patient of theirs if I didn’t move to Washington DC.

I started on daily, then switched to nocturnal after a few months. To answer Jane, YES! I felt good on daily, but on nocturnal I feel even better! I prefer nocturnal, because (1) I work late and hated cleaning up at 2am, (2) I am better able to fit dialysis into my lifestye- I cook dinner and sometimes start up the machine, finish cooking while its testing… (3) I LOVE being able to wake up at 6am and feel refreshed, also I never take off more than 2.5 kilo, but with every other day, if I do have to carry fluid, it isn’t that much, and quite honestly I don’t feel that different.

BTW, I am now on Nocturnal 4 days a week, I don’t currently have medicare but will have it again in June. My understanding after hunting down a regional renal medicare rep, is that medicare will pay for 13 treatments a month, or every other day regardless if it is nocturnal or daily. One caveat, or not- It may be possible to have 4 treatments permanently paid for by medicare- because these modalities are new, they do not have policies written for them. Strike while the iron is hot, and have your center send a request to medicare in to approve an additional treatment, worst case senario- they deny the 4th treatment and you do every other day.

[quote=“Jane” First, can anyone say they feel better with more hours of dialysis (3x nocturnal) vs daily txs of half as many hours? And the time to set up machine and tear down is a factor- is it the NxStage that cuts down on the set up time?[/quote]

If you would like to private email me, my email is headbandgrrl@aol.com :smiley:

Best to you all!

mb aka “soleilemoon”
5/02-3/04- traditional hemo
3/04-10/04- quotidian home hemo
10/04-present- nocturnal 4 day a week!

Hi- I see that you are in Montgomery. I am originally from Utica, NY which is about three hours from you. I am aware of a home program in Oneonta, NY using Aksys- think short daily, and the Rubin center in Troy-nocturnal and I am not sure what they use. There are also some in NY. Of course, because I was at the Philly program, I highly recommend it.

Soleilemoon

For my nocturnal treatments, I start set up 10. Get on at 11pm, off at 6am- cleaned up by 7am. Whereas on a “traditional” treatment it would take me 1/2 day to recover, on quotidian it would take me about an hour, on nocturnal it takes me no more than 15 minutes on a “bad” day. Of course, your mileage may vary!!!" I am so excited to see so many people talking about programs. I really think we need to get AAKP to work to get home hemo programs in every region of the US, and beyond.

I’ve been doing short daily home hemo for three years, for the last two years on the Aksys PHD. Since being on the Aksys I’ve participated in two studies. First I dialyzed for a month doing every other day 8 hour nocturnal dialysis; the second study was dialyzing six days a week dialyzing every night for 8 hours. I found every other day 8 hour dialysis to feel very similar to daily short (2.5 – 3 hour) dialysis. I found every day 8 hour dialysis to feel better than daily short in the sense that I stopped all binders and as Cathy has posted elsewhere I needed to increase potassium and phosphorous in my diet.

The one thing about nocturnal was that I felt more tired. I have to get up a 7am to start my day and with the nocturnal that meant that my treatment had to end at 6am, which in turn meant that I had to start getting ready for treatment at about 8pm. This schedule did not work well for me, I just was not getting enough sleep. I’m just talking about me and the non-dialysis constraints in my life. Once the Aksys gets a heparin pump integrated with the machine I expect that I will mix eight hour runs into my weekly regime but for now I go the short daily route.

As far as set up and tear down - for the Aksys it is minimal – none before hardly and five minutes after.

My experience is the same as Cathy’s. I could choose the B Braun or the Aksys PHD. I could choose three days a week with a paid helper (Braun only), or daily whatever length on either.[/quote]

In Mexico I know someone who travels for 2 hours 3x a week for dialysis but that patient doesn’t have a schedule time for dialysis…the clinic serves patients on a first come first served basis…sometimes the patient waits up to 8 hours just to get on machine then after treatment travel back home for 2 hours…right now she’s desperately seeking home dialysis and looking for resources over on this side…she doesn’t have internet and one of the hardest part for me is how to assist people who live in other countries with these needs…though there are dialysis clinics over there I think they don’t have all the options as we do have here in the U.S.

That is what I was told too (I am a patient with DaVita) but I was able to access the website in upstate NY. The DaVita @ Home program is only being offered through specific facilities.

I DID IT!!!Got a call a short while ago from Next Stage. We have been accepted into a clinic in Toms River, NJ for training. Waiting for confirmation on a date but we may be starting January 3, 2005. I am so excited I can’t stand it. I’ll keep you posted.

Pat

This is one of the programs I am considering, too. Can you tell me anything about this area in NJ- cost of living , traffic, weather etc? I am looking for a nice med. size community near a larger city.

Jane, I really don’t know too much about the Toms River area yet. I know it is somewhere around exit 87 off the Garden State Parkway. It is close to the shore areas (a BIG plus in my book). Will let you know when we go down there what I find. When I spoke to the rep from NxStage, he said there is another clinic in Massachusetts. I just kept emailing and phoning them. I think they took me to get me to stop. He contacted the Toms River group for me and got me in, it was up to me where I wanted to go. I’m sure there’s info on the Net about the area. Start with the Chamber of Commerce page and there are usually lots of links to learn more. Good luck.
Pat