It has finally happened our “home” nephrologist is starting a home program for patients. They have decided to use the Aksys because they don’t have to be responsible for RO’s, the Machine and Training Time is Less.
Bill, when you did a trial on nocturnal with the Aksys did you run without heparin. It was my understanding the Aksys didn’t have a heparin pump is this true?
Am I correct that the Aksys has a built in RO or do you have a separate RO?
Did you notice much difference in your labs or the way you felt daily vs nocturnal?
When I did the nocturnal studies I was provided with a stand alone heparin pump. When I visited the Aksys corporate headquarters last summer I saw a new version of the machine – one of the changes was that there was space for a heparin pump. It maybe that by the time the new program by you got started the PHD would have a pump or you may be able to get supplied with a stand alone pump.
The PHD has built in water treatment – it produces 50 litters of ultra pure dialysate for each treatment.
I was able to stop taking binders while I was dialyzing daily nocturnal – daily 8 hour runs – and eat all the dairy I wanted. I was tired so it was hard to say if I felt better.
The Aksys does use water between treatments. In fact one of the only times it does not need to be hooked up to the water supply is during the actual treatment. During treatment the PHD is pretty self contained and could operate without being hooked to inlet water or the drain line. The other point that it does not need water is during its idle stage. The machine goes into the idle stage when there is enough time between treatments - for instance on a day off the machine would sit in idle and not use water. One thing I’ve learned from when I go on vacation is that the PHD does a disinfect every couple of days when it’s not in use - so it comes out of idle and uses water.
Marty have you been told that your Dad could continue with eight hour daily runs on the PHD? - That’d be great. It would be very interesting to hear the comparison.
I am definitely considering going to 8 hrs on the PHD. That would get us home. I don’t know when it will happen. I am waiting to see how service is in our area and the frequency of service calls and how the patients in our area like the machine. It will be interesting to see what the interest is in home hemo in our area. Things are still up in the air as the nephrologist just told me a couple of days ago they were starting the program next month. I was shocked that they are even starting a program because up till now all I heard was why they couldn’t start a program.
Cathy, At this time I am not sure of anything. I am just collecting information and looking into what is feasible as far as the machine, our center, and our personal circumstances. Were you the one at one time who complained about the PHD breaking down alot? If so has it gotten better?
Marty, for you is the main advantage of having the unit locally the travel to the unit? I know you’ve done alot of research so I guess I’m curious what you’ve learned and what things you’re weighing.
Also I was wondering something, I hope you don’t mind me asking, as you dad’s carekeeper are you able to take breaks?
Hi Marty,
I’d love to know what convinced your father’s doctor to decide to start a home hemo program. Would you be willing to ask and let us know? Maybe whatever convinced him/her could be used to convince other doctors.
Marty, no it wasn’t me who complained about the reliability of the PHD. I do know there are others on this list who have had problems with it when there aren’t many machines around so there is no local tech. I think Bill does well because he can get service easily. I personally am on the Fresenius, which is a good machine but I wish it didn’t use water due to all the testing required, the cost of the water and electricity, and the maintenance, but, I’m learning to live with it.
On another thread, my neph was very anti-home hemo, anti-daily, anti-nocturnal and very skeptical when I first met him 3 years ago. He said there was no way I would be able to do home hemo and that I shouldn’t believe everything I read on the internet (true story). In his defense he did actually start to look into it, after much prodding my me, and came to support it. When I actually located a center that would offer it, thanks to an email list, he did what was necessary for me to be able to get in the program. I do think it helped that the HMO (Kaiser) was entering into an agreement with this company to provide their home hemo in a new unit opening up soon.
So I do believe for more nephs to “get on board” it will take patients asking for home hemo, pestering them, finding their own units, providing lots and lots of information, studies, web sites etc., because I cannot believe any doctor would not believe in the benefits of home daily hemo once they have done their homework.
There are 2 things I would like to make better. First of all you need to know that our home nephrology visit is a 2 hr. drive 1 way. So I would like to get closer to home to eliminate the long drive back to Saratoga each month and cut down to 1 nephrology visit per month.
The 2nd thing I would like to do is use a machine which required less of my time for preparation, tear down, and cleaning. We have to maintain the RO along with the dialysis stuff. It takes about 6 hrs, 1 day a month just to do the RO cleaning. This may get better though they are looking into an RO that self cleans. This matter isn’t urgent for me but it does have weight.
This is what I compare. Our service right now is excellent, When I have a dialysis machine problem or RO it is taken care of immediately and without any hesitation. The Fresenius machine we have is very dependable. I have only actually had a service call 4 times in 4 years and 2 of them were in the 1st year. The staff at the nocturnal program is very good at responding to telephone calls and problems.
Another thing I compare in programs is flexibility. We can run days, nights or whatever our need is and we can run the nights of our choosing. My mother was in the hospital a while ago and it was a tremendous help being able to run days so I could be with her at night.
One of the reasons I didn’t jump on doing nocturnal out of Rochester, NY which is 2 hrs from our home is the schedule. You had to run every other night. Another reason I hesitated is because the service man they had for their Fresenius machines was the same serviceman we orginally had. I really like him and thought he was good BUT he was stretched way to thin
and he just didn’t have time to make the quarterlys like he was suppose to. I also felt bad when I had a break down because he had to do some work in rearranging his schedule to get to us.
Another thing I compare is daily to nightly. One thing about nightly is that you get so much dialysis the pressure isn’t there if you need to skip a treatment. The other thing is if I went to daily, I would spend time during the treatment so although I might gain time on setup and cleaning etc. being their during the treatment would eat up the time gained. I have to be their during the nightly treatment but I sleep anyway so it’s like killing 2 birds with one stone.
Can I get a break? Not really. I do take nights off for a break but no long extended periods. If I wanted a week off I’d have to make arrangements for dad to go in-center.
My perfect scenairo would be to use the PHD nights and have it done through our home nephrologist and center. This would eliminate the long trip, make one nephrology visit a month. Less machine care on my part and I would probably have the flexibility to do days if I needed too. The only thing that would remain to be seen is the dependablity and service on the PHD.
Beth,
In all honestly I will never know why the sudden change at home. I know the nephrologist told me he was going to insist they start a program because of how much better patients do but let’s just say I know that wasn’t it. Somethings going on and I don’t know yet what it is. This is speculation on my part but I think someone over his head told him he was going to start a problem. I get the “feeling” it may have had to do with 2 things coming together. 1 competition. Someone in our area is building a new dialysis center (he told me that) 2. Buffalo has an Aksys program. 3. Rochester has Fresenius centers and they are talking nocturnal. These places are all within a 100 mile radius. The clinic and hospital he is affiliated with prides itself on being the #1 clinic in the area and the most up to date. A month or so before the sudden change I sent a whole bunch of documentation anonymously to the person who has the authority to dictate what the clinic does rather this played a role or not I will never know. I am pretty good friends which someone of position at the center, when the opportunity presents itself, I am going to ask if they know why the sudden change? Pressure had to come from someplace I just don’t know where.
Cathy & Marty,
Thanks so much for sharing your experiences with doctors who changed their minds about home hemo programs. Competition is a big issue. If your clinic is the one offering the fewest options in your area, those that can find out about options other than in-center hemo will go elsewhere. Marty, I wouldn’t be surprised if you learn that the anonymous mailing of documents to decision-makers helped to make a difference. The more that other patients who are like all of you ask for specific treatments (and even specific machines), the more likely clinics will be to consider newer modalities and equipment. Demand does drive supply in other areas; why not dialysis. Tell your friends and in-center dialysis colleagues about Home Dialysis Central and hopefully they, too, will decide to become home patients.
Now if clinics can just get paid for daily treatments, I bet this will remove a major objection clinic management has to daily or nocturnal home hemo programs. I’m looking forward to hearing in the next few months that a new daily dialysis bill is being introduced.
Spoke with a NxStage rep and he said that units offering NxStage get paid just as they do for 3x week dialysis, and because the major cost for nursing staff and building costs is eliminated, they are able to profit. So, according to him, units are not eating costs- they are making about the same.
Amen Beth. I know that the 109th Congress is facing many challenges including budget deficits but I hope they (Congress, as a group) will take my view that the ESRD program should first have the same sort of inflation update as other Medicare programs (after all inflation is a fact of life, like gravity, and without appropriate yearly adjustment the ESRD program gets a yearly inflation cut!). And secondly make more frequent home hemo dialysis more widely available. More frequent home hemo is not for everyone but it should be an option for everyone.
Beth write:
Now if clinics can just get paid for daily treatments, I bet this will remove a major objection clinic management has to daily or nocturnal home hemo programs. I’m looking forward to hearing in the next few months that a new daily dialysis bill is being introduced.
In speaking with a NxStage rep. I was told that units offering NxStage are not losing $ on daily txs. They get paid the same rate as 3 x a week in-center. Because home txs do not incur the major costs for nursing staff or building costs it works out about the same.
I think the reimbursement covers the ongoing cost of treatment but the low training cost is a barrier to programs starting up , which is why daily home hemo is available in only a few areas. As far as making more frequent home hemo more widely available I think CMS should authorize an additional payment. I think one reason it is hard to get this through Congress is that savings from fewer Hospitalizations saves money on the Part A side of Medicare., while the expense for reimbursing for more frequent treatments would come out of the Part B side of Medicare. Savings in one pocket can not pay for program expenses that come out of theother pocket - this is an accounting fluke that is standing in the way of advancement.
Whether at home or incenter CMS should reimburse for four treatments a week – if the patient wants four treatments they should be able to get four treatments. Centers should be open 7 days a week so patients can do away with weekends - the day after the weekend has the highest mortality rate… Reimbursing for four treatments a week would be a big boost to home programs and would make more frequent home hemo more available.
There are large upfront costs for dialysis clinics that are not fully reimbursed by the training rate that Medicare pays…approximate loss of $400/training day, plus any home modifications required that the clinic pays if they don’t require the patient to pay costs not covered by Medicare. Once the patient on conventional home hemo goes home, it takes about 2 years at the Medicare reimbursement rate to recoup these costs. Plus, if the patient is dialyzing more than 3 days a week, Medicare does not reimburse the clinic for those extra treatments.
I don’t know what the NxStage machine costs but have heard training time is shorter…about the length of time it take to train someone on peritoneal dialysis. If home hemo training times can be shorter without jeopardizing patient knowledge and safety, this may shorten the time it takes to recoup the costs and make home dialysis more profitable sooner. The annual cost to Medicare of a PD patient is less than hemo according to data collected by the United States Renal Data System. However, the Medicare cost data on home hemodialysis is not reported as a comparison with PD or in-center hemo because of low numbers of patients on home hemo.
I’d love to know what it costs a clinic to offer each of the home therapies. I think if this information was available, it might:
convince Medicare to increase the reimbursement and possibly even pay for more treatments weekly; or
convince clinics that if the patient commits to home dialysis for at least a year they CAN recoup their upfront costs.
If anyone knows an administrator who would be willing to share their cost data with Home Dialysis Central, please have them contact us.
One of the variables that determine the cost of home programs is the number of patients in the program. Having 1 nurse and 1 tech for 10 patients is alot more cost than having 1 nurse and 1 tech handle 30 patients. The nephrologist told me it would take 16 patients for them to break even on the nocturnal program. This included the monitoring at night which is 1 of the biggest expenses of the program. It is also why not all nocturnal programs have monitoring. They just have someone on call.
Beth, In answer to your question on how the home hemo program got started. Talked with my inside source today and found out that my going over the nephrologist head to his superior had a hugh impact. They are very concerned about their image of being the leaders in medicine in our area and my info prompted them to get with the daily dialysis. Hence the order was given and people are working on it.