Clinics offering PD are more available than clinics offering home hemo so people usually don’t have to travel very far to be trained for PD. I’m curious to know how far you would drive to be trained for home hemo and would it make a difference in the type of home hemo offered, i.e. would you drive farther to get daily or nocturnal home hemo than conventional?
I’ll be the 1st to answer. I drove 287 miles 1 way with my father. We moved for the training period and lived in a motel. I am glad this was a nocturnal program but I would have done the same thing if it had been a conventional home hemo program and there was no hope of nocturnal.
I lived in the Bronx and sought a home hemo program. Manhattan was offering two that I knew of. now that isn’t far but there are major traffic hassles and virtually no street parking so I had to pay up to $23 each time. I trained at Rogosin and got reduced parking that cost me $10.50 3X a week.
I moved to Jackson NJ soon as I was trained and my trips to Rogosin are now about 60 miles, a pittance I know but take traffic and parking into consideration and it is no longer a pittance.
but I would not be happy to return to dialysis at a center.
I would be willing to travel, but the problem for me is that any centers offering home hemo within traveling distance from my home are in inner city areas which is a big drawback for me. I don’t mind driving in some traffic but am fearfull of going into the bad sections of cities which is where the home hemo programs are located in NJ area where I live… Driving to and from on a normal day would be bad enough, but on a tx. day would not be a good thing. I would have to drive into places like bad sections of Newark by myself, and that is scarey. It’s not the distance, mostly the areas where centers are located. I have to wonder too why they tend to locate them in such places because if I won’t go there, certainly the older pts. won’t travel to them. If there were a more rural or suburban unit to travel to I would do it in a heartbeat. Lin.
I’m starting dialysis and training on Monday at a center about an hour from my home. But, two years ago I spoke to a doctor in St. Louis (I am in CA) and considered going there for training (he was willing). The problem was getting service on the machine and getting my insurance to go along!!
Hi Cathy,
Welcome to the message board! Wow. Years ago, I knew a patient who traveled nearly 400 miles each way to get training at the clinic where I worked. We helped her locate a place to stay during training and she had to come back to clinic appointments every 6-8 weeks. However, I think you probably win the prize on the person willing to travel the farthest.
Would the St Louis doctor have helped you get your machine and supplies after training? Would a local clinic have backed you up if you couldn’t do your home dialysis temporarily due to mechanical or other reasons? Would you have been able to get a doctor to see you closer to home or would you have had to go to St. Louis for clinic appointments?
The Northwest Kidney Centers has home hemo patients in SE Alaska. For the last 30 years if you wanted to live in SE Alaska and needed to do hemo dialysis you would fly 1,000 miles to Seattle to train and NKC would supply your equipment, bill Medicare, etc… NKC still has people from all over the state of Washington in their home hemo program plus a handful of people from other states – Idaho, Oregon, Alaska and Montana.
Bill, There has got to be an answer for my predicament. It’s hard for me to believe that the people who are that far from the center return for visits every 4 to 6 weeks.
We never got down to the nitty gritty. He felt my local neph could easily handle my appts. and also felt that a local tech supporting the in-house centers could handle the maintenance issues. My insurance would have probably been the major issue, but luckily they have come around and Kaiser now is seeing the benefit of home hemo.
It is amazing how the doctors who are familiar with home hemo, and especially slow nocturnal, realize how easy it is and how much healthier their patients are. They seem to be willing to go way out of their way to help patients. Now if we can just get a lot more nephs supporting home hemo.
What some on this board don’t seem to realize is that the centers dont want to train you for home hemo, Ive seen my eob’s and they are billing for labs etc…, that im not getting, we only do labs once a month yet Ive been billed for labs weekly, once you go to home hemo, the center looses the opportunity to pad a bill on you, thats why everyone gets these ridiculous statements from the centers, about water, etc when they start inquiring about home hemo, I was told because I have a catheter thats why renal care group wont let me in their home hemo program, but praise God, I found a new unit davita at home that just opened in the phoenix area and have an appointment with them, the resistance is not due to lack of patient request, its again the large conflict of interest that exists in the renal care network, centers, nephrologist make money off of us going into a center once we’re free to go home, and in control of our dialysis, they know, all the studies show, more frequent, and even nocturnal dialysis is better, the patient feels better many have gone off hypertensive meds, binders etc…less money (visits, billings for them) it’s just not their goal, the sooner we realize that the better off we will be.
I have to address your point about overbilling. Although there are a number of legitimate barriers to home hemodialysis, I don’t believe that one of them is because clinics routinely bill patients for services they don’t provide and wouldn’t be able to get away with this if the patient was at home.
Although billing errors can occur because we’re all human and make mistakes, if a Medicare provider knowingly bills for services it does’t provide, this is called Medicare fraud and it carries a stiff penalty and possible loss of Medicare funds. If you have received statements that include bills for services you did not receive, report these to your clinic manager and/or your doctor. In the case of lab charges, these should be easy to document because every blood test that is drawn should have a corresponding lab report for that date. If there are bills for dates for which there are no reports, ask the billing office to remove these from your account and refund Medicare and/or other insurance. If the clinic is unwilling to do this, I’d certainly consider reporting the overcharges to Medicare. Here’s info on Medicare fraud:
http://www.medicare.gov/FraudAbuse/Overview.asp
Regarding the catheter and home dialysis, I have heard dialysis clinics express this concern. As you probably know, catheters carry more risk of infection than other types of dialysis accesses. I know other home hemo patients that have catheters and have done well because they learned how to care for their catheter. I ask…Who will do a better job of caring for an access than the person whose body the access is in who will also have to live with the consequences if he/she does not care for it properly?
So far as the cost benefits of home vs. center dialysis, in reality the clinic makes the same amount of money from Medicare for home hemo patients as it does from center patients. It costs more to have one machine for one patient (vs. one machine for 6 patients for in-center), but a clinic doesn’t have to pay for electricity and water or have as many nurses to take care of home patients as in-center ones.
Most patients on home dialysis still take EPO which Medicare pays the same for the same dose whether at home or in-center. As a matter of fact, if a patient takes EPO at home the clinic doesn’t have to use staff time to give it. Most of the other medications patients take are oral ones and patients buy them through local pharmacies. Nephrologists and dialysis clinics don’t get anything when patients buy and take these medicines other than a sense of satisfaction when patients are doing well.
When clinics do daily or nocturnal treatments, they are not getting paid by Medicare for any treatments over 3. These clinics choose to provide the extra treatments with the hopes that it will keep the patients healthier and provide a higher quality of life. Some are doing this as pilot studies to see if it will save money in the long run. They believe that if a patient is healthier and stays out of the hospital, the clinic will get paid for the days the patient does dialysis at home vs. in the hospital getting paid for days the patient does dialysis in a hospital. If the patient has to take fewer medicines to stay healthy, this means that no one is having to bug the patient to take his/her medicines and the patient has the extra money to spend on something else which makes everyone is happier.
Right now the barrier to more treatments is Medicare reimbursement. Until Medicare removes the limit of 3 treatments a week, there will be little incentive for more clinics to offer daily or nocturnal dialysis, unless data shows that they can save the same amount or more money somewhere else. Feel free to read about the Kidney Patient Daily Dialysis Quality Act of 2003 (HR 1004) and write your representative through Home Dialysis Central’s action alert center. This bill needs a companion bill in the Senate and your senator may be just the one to introduce this. If this bill doesn’t pass this year, I’m sure it will be re-introduced next year after the new session of Congress convenes.
its great that we have rules governing dialysis, but the sad reality, at least the one I’ve been exposed to over the last 5 years has been one of abuse of the system, I tell you no lie when I say my nephrologist billed me for visits he did not make at all, not him nor his nurse practicioner, I can see mistaken rebilling etc, but since every visit has to have a icd-9 code with a date I dont see how you can mistakenly do that over and over again, and the same with the labs, the unit only does labs once a month, but at any rate, Ive also seen what happens to patients who complain, and Ive tried to work in the system, you get labled a trouble maker, but as you said in regards to the catheter, who’s going to take care of it better me or them, but the issue isnt that deep, because they dialyze me in center without any hesitation, so why exclude me from the home hemo program for that reason, I had the social worker call them to see if it came from her would they give her a better reason than just “its our policy”, they didnt they told her the same thing and when I challenged her as to quality of life issues, she had no reply because again now we were ultimately talking about her boss. I was in a center back east and witnessed a woman who was on dialysis for a year that didnt need to be, her nephrologist was part owner in the center, the only way she found out was the nurse jepardized her job, and told the patient to go to another doctor, thats not rumor thats what Ive seen with my own eyes, Ive been subjected to rude nephs, etc… and one very good Dr. named Korbin, and the difference with him, was he was a researcher he was actually trying to get people off of dialysis. But Im not trying rant, just want you to know that this goes on, it may not go on where you are, but Im not the only one who’s experienced these things.
My husband and I are new to hemodialysis at a center. We know already that this is not what we are going to deal with for very long if there’s anything we can do about it. When I asked at the center for information regarding home dialysis, I was told the technology is not available in this area. I have come to find out, someone has home dialyzed here 10 years ago (has since had a transplant and doing great). This board feels like a life preserver has been thrown to us. I have just started the search today for a clinic nearby, there is none. I will travel as far as it takes to accomplish getting my husband on home hemodialysis.
My question to the group is once you find a center or clinic that will teach, how do you go about getting your doctor to go along with this? Do you change doctors? Do you continue traveling to visit the doctors in the area that will accomodate home dialysis? Thanks for any help you can offer.
Pat
Hi Pat! Welcome!
My husband Michael has been on dialysis for four years–two on PD, two in-center hemo, and I felt exactly the same way you do. We had decided that we were willing to do whatever necessary to get Michael on home hemo. Incredibly, just at the point where we were getting desperate, we learned about a new home hemo program in Scottsdale, Arizona, which is about a two-hour drive from our home. We just completed our fourth week of training, and will do our first “trial” run at home this Thursday, our first nocturnal run on Friday. We couldn’t be happier.
In answer to your question regarding doctors, we too worried about convincing our doctor, but when he found out we were interested, he was completely willing–even enthusiastic–about the change. So, my advice is to tell your doctor what you have in mind and see what he/she has to say.
One thing I wanted to mention is that I know our unit is considering patients from other states who are willing to travel there for training. It’s a Davita unit, and I think what they have in mind is that you would do follow-up visits with a Davita unit in your area. Surely if our unit is doing it, other units closer to you are willing to do the same. (I think Davita-At-Home is trying very hard to expand, so it might be worth a look…)
Anyway, I wish you absolutely all the luck in the world. I truly believe this is a wonderful option. After just two (that’s right–two!) slow sessions at the unit (to similate what we’ll be doing at home) Michael is already clear-headed, less lethargic, and swears he didn’t have a “dialysis hangover” at all. Last night when we were driving home (we’ve been spending the weeks in Scottsdale and driving home to our home in Northern Arizona weekends) he was keeping ME awake! Now that’s an amazing turn of events!
Deb
Hi Deb!
Please give us updates on DaVita-at-Home and your experiences with the training. Is this Davita’s first home hemo program? Will they be starting more home programs in their other facilites?
I believe Davita has units in several other states, including Arizona, Utah, Minnesota, Michigan, Pennsylvania, North Carolina. (There may be others, that’s just what I remember.) Their web site is www.davitaathome.com.
We actually completed our training on Monday. They set up the equipment yesterday, and Michael’s doing his first in-home run (with the nurse coming up to make sure we’re okay) tomorrow. He’ll do his nocturnal run on Friday night. We absolutely can’t wait!
Deb
Hi y’all,
DaVita at Home is a pilot project, and I’ve been told that only people who are part of the project can access that website.
Hi Im in the davita at home program out of scottsdale arizona, the website is www.davitaathome.com
Ive done my third run at home, and am coming along well. anyone can acces this site for more info
Hi Deb and Evelyn!
I just went to the site and found that DaVita does have home programs in several states. It says that they offer daily and 3x a week nocturnal and it is covered by Medicare and private insurance.
Which modality are you on Evelyn? Which model machines are you each on? How was the training? Are you trained in the buttonhole technique? Please let us know how things are going Evelyn. Sounds like you have both taken a step up -congratulations! The big question is how are you feeling or is it too soon to tell?
Deb and I are actually in the same unit, we’re using Fresenius 2008K made specifically for home use. The training was great. Ive been on dialysis for 5 years and have been waiting for 2 years to get into a home program, I have a catheter so I dont have advice on needling, today I felt great, this was my third run at home, Im dialyzing every other night and am on medicare so it must be covered.