Any tips for finding a quality noturnal program? I have noticed few recomendations on the dialysis boards of ppl whgo say they have a good program, or if there were, they were in a cold, northern location. We prefer a warmer climate (we think) if we are to relocate. But any tips on trying to find a program from afar? What would be key questions to ask to know if the person on the other end of the line really has a good program/unit worth moving to?
Lynchburg Nephrology is in Virginia and they have an excellent program.
Hi y’all,
Yes, Lynchburg has an excellent program, and it’s probably even warm there most of the year. : )
You can find locations of other programs in the Home Dialysis Central database (look under “Find a Center”). In fact, if you ONLY check the box for nocturnal home hemo and nothing else, it will show you every program in the U.S. that is now in our database.[i]
It’s an excellent idea to have some questions in mind to ask. Some that occur to me might be:
– When did your program begin? Why did you start it?
– How many people do you have on nocturnal home hemo now?
– How many training staff do you have to help patients?
– Do you require a partner?
– Do you do remote monitoring (usually using a computer)?
– What sorts of challenges have patients run into trying to do nocturnal home hemo? How did you solve them?
– How do you handle access–do people use the buttonhole technique? Special catheters?
– Are you including your patients in the Quotidian Registry (this is a new registry out of Canada that is trying to collect data to prove the benefits of daily and nocturnal home hemo)?
I’m sure y’all can think of others… By the way, if you talk to clinics, encourage them to do Sponsored Center Listings in our database–these will tell you a lot more about the program before you even have to call.
Dori
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Thanks Dori,
Checked the database and found about 75 nocturnal programs. I was surprised that there were that many. Does anyone know how many of these programs are at home vs incenter? Not sure, but seems like FMC has the most programs.There are not too many programs in the warmer climate states. Was interested in FL and only saw one program located in the Miami area. Lynchburg is cold brrrrr!
The questions you suggested are good ones. I am concerned about what kind of support and service I will get if the machine breaks down, which machine is the most user friendly. which model machine gives the best tx., if I have to go into the unit for a tx will I be fit in without missing time, how pleasant is the unit ( clean, professional), how nice is the community etc.
It is difficult to know from afar how good a program is up close. Would you say just ask all the questions you can and then travel to the program to see the community, unit? Could be an expensive proposition.
Hi Guest,
Wow, can you tell that I haven’t figured out the italics function yet? 
We ONLY included HOME nocturnal programs, so some of the programs in our database may also offer in-center nocturnal, but we didn’t track that.
I think visiting a unit/area before moving makes allot of sense but as you say, the cost of travel can add up. However, I think in this situation it would be money well spent. Finding a great place to live would be a challenge for anyone, add in having to pick a dialysis provider too and it gets complicated fast. I think I would pick where I wanted to live and then talk to the local providers and Docs. If it sounded like it could work, I would then try to visit to see if it was a good fit.
Hmm…I think Dori’s questions are very good. I might also ask if they encourage incenter self-care. I would also try to determine how hard it is to back-up incenter, do home patients have one center to back up at? Or are there multiple centers to find a slot in? If you’re working or planning to work, I’d ask if the back-up centers are open for evening runs.
What areas are you considering in FL? I may be able to give you some help. Is your preference home or incenter nocturnal?
Cat,
Open to any and all programs in Florida with the exception of super high traffic areas and high cost of living areas.
I know there is a nocturnal incenter program in Boyton Beach and there may be on starting in the Palm Beach area next spring.
As Dori said previously the Home Dialysis Central database does not include clinics that offer in-center treatments. However, knowing that some patients are not able to do home dialysis for one reason or another, I’m glad to hear that clinics are starting to offer newer treatments in-center. Three-times a week dialysis done in a clinic during normal working hours makes so hard for dialysis patients to hold full-time jobs. Nocturnal hemodialysis, whether done in-center or at home, seems to offer more opportunities for uninterrupted daytime activities plus improved health and the sense of well-being that is so necessary to do activities you want and need to do.
My family is in the Chicago area - where I grew up - and I go back once or twice a year, I’m going back for Christmas. The unit I use has incenter nocturnal and I am so happy that they let me run on their nocturnal shift. I will be dialyzing there on the 23 rd for eight hours from 8:30pm to 4:30am. It is strange but it works out great, so much better than a typical incenter run.
I keep thinking (because I am a frugal traveler) that if incenter nocturnal was more widely available I could save money on hotel rooms when I travel. :lol:
Cat,
I am aware of these two programs, but aren’t these high traffic, high cost of living areas? Are these BBraun units?
I really do not know anything about the areas as i do not live in FL. i would recommend you contact the units directly to see what they can tell you. good luck.
Besides visiting or at least calling and checking on clinics that offer nocturnal dialysis, another thing to consider before you move is whether your insurance will still cover you in a different state.
– If you have Medicare, it is a national program and covers the same things no matter where you live in the U.S. However, you need to notify Social Security when you move.
– Some health insurance companies (PPOs and HMOs) have contracts with specific providers. If you go to an out-of-network provider, you pay a lot more. Your insurance company should be able to tell you if it will pay for dialysis at the clinic where you’re interested in transferring.
– If you have state medical assistance (Medicaid – called MediCal in CA), it only pays for dialysis in your state or in clinics that contract with your state Medicaid. If you’re moving far away, you’ll need to get Medicaid in your new state. Medicaid guidelines and residence requirements vary. You’ll need to find out what the guidelines are for Medicaid in the state where you’re considering moving. You can look up information for consumers about any state’s Medicaid program at www.cms.hhs.gov/medicaid/consumer.asp.
I’ve heard of dialysis or transplant patients who moved without checking their insurance coverage and it led to many headaches.
folks forget about florida, fresenius runs the show and they refuse to work with anyone desiring home hemo let alone nocturnal. In fact they had us build a house afterwards told us they would not provide home hemo. So after 37 years in florida and 10 with fresenius in clinic we left towards nkc seattle some 3748 miles away; best decision we ever made.
But florida has a poor support system and retrograde politicians that have endangered the dialysis programs in general.
If you plan to live in florida you literally take your life in your own hands and better have the money for it.
Would you say more about your program at NKC?
NKC stands for Northwest Kidney Centers. NKC is a sponsor of Home Dialysis Central. If you use the Home Dialysis Central Find a Center database to look up the listing for Haviland Kidney Center, you will see that this is the site where NKC trains patients to do 5 kinds of home dialysis. Haviland’s sponsored listing describes their home dialysis program. Click on the link in that description and go to the NKC website where you will learn that NKC is a not-for-profit organization, opened in 1962 as the first outpatient dialysis program in the U.S., and currently treats around 1,200 patients. NKC is innovative and has done many things to improve quality care and quality of life of people with kidney disease.
The one thing I am concerned about or that I think is poorly explained on line - the NKC Home Dialysis Central listing and the NKC web site - is the idea of being/using a regional home dialysis resource. When I put myself in the shoes of someone on dialysis outside the area served on an incenter bases by NKC units (basically King County, WA) but still in Washington State, I don’t think it is at all clear from online info that a person in this situation would have an home hemo dialysis option.
I think this is growing grey area. Regional home dialysis centers: how can people who live outside the incenter service area of the home training unit go about organizing their care? For instance should there be a CMS monthly stipend for a back up center? - an on call fee? What are the reimbursement barriers to regional home hemo centers? What are the particular consumer issues around using a regional training center?
Bill, I posted a new topic for consumers to post their concerns about being home trained at a regional training program. I’ll be anxious to see what people post.
In response to your posting about how to organize care and reimburse nearby clinics as a backup center…considering that CMS is looking for ways to cut costs, I don’t see Medicare paying a monthly stipend for a clinic to be a backup center in case a patient needs dialysis. However, Medicare will pay for backup in-center dialysis at a clinic that is not the patient’s “home” clinic. It would be arranged and billed just like traveling dialysis.
So far as patients getting medical attention, I’ve heard of primary MDs following their patients between clinic visits and have heard of patients having blood drawn locally and sent to the dialysis clinic. I am sure primary MDs bill Medicare when they see patients and would expect that labs bill Medicare too. Obviously there needs to be good communication between the nephrologist and the patient’s primary MD no matter what and lab results need to be shared immediately.
I’m not sure how many clinics want to be regional training programs. Some possible barriers I can think of for a regional training program are:
– How does the regional training program provide in-home machine maintenance? Travel expenses can run up no matter whether the machine tech is from the dialysis clinic or the machine manufacturer.
– How does the regional training program install a water system for those machines that need one or get someone to do needed home modifications where staff at the center may not know or have contracts with businesses?
– How many hospitals would regional training programs have to have agreements with since patients might need to be hospitalized for dialysis and what nephrologist would follow the patient’s care in the hospital?
These are just a few things off the top of my head. I suspect there are other barriers I haven’t considered. I’ll post a message on the professional message board and ask about their barriers. It’s always helpful to know what barriers people see so we can do our best to come up with solutions for those barriers.
to GUEST and others-- we are just starting a nocturnal training which will be monitored via internet here in Shreveport, Louisiana. The climate is great – it has been 70’s here for most of the past 2 wks-- chilly now for a day or two but will return to 70’s by weekend. wanting to leave FLA? this would be a good spot. 5-6 Fresenius units and 1 DCI. we are the only local trying to do home-hemo. we want nxstage but can’t get it all worked out here for many months so we are going to go with the every-other-day nocturnal at our units begging!! they want very much toget the program started here and would welcome another patient. I cam put you in touch with the right people. we will be using the new fresenius at home model.
we (husband<patient> and I) are realtors and can put you with someone to find a place to live