Cost of Nocturnal

My suggestion would be not to coddle doctors to start programs, but to pass state legislation to ensure patients tx choices. Because unless one has a fair minded nephrologist, he is not going to listen. I have told several nepohrologists of my strong interest to be in a home hemo program and they each told me they didn’t offer it as none of the patients were interested. Nevertheless, they each told me that if they ever needed dialysis, they wouldn’t do it in a unit. What’s good for the gander is not good for the goose???

It’s true that most patients are not interested in home hemo, but that’s because they don’t even know what it is. I feel that education should be mandatory in the unit. If patients realized what home hemo could do for them, many more would desire it.

I have to agree with Nancy on this one. I think legislation needs to pass making it mandatory patients have choices. I can tell you from 1st hand experience in our case Beth the suggestions you gave didn’t work. My father has to see a nephrologist locally. This nephrologist always says I wish ALL my patients were like your dad. He even shows his labs to other drs. and he talks as though he would like a nocturnal program…nothing happens. The nurse adminstrator says she wants one. The PD nurse says she would love to train patients for nocturnal. Askys came in and convinced the people higher up the line than the nephrologist to start a daily program. The nephrologist told me he thought they were going to start one. I went in-center for a visit and talked with other patients. I got feed back from a nurse they were questioning the nephrologist about starting a program. Well all this and still not a speck of hope a program will be started. Patient request and proof of better dialysis just don’t seem to make a difference. Not to mention this clinic told me 4 years ago they were thinking about starting a slow nocturnal program. You really need motivated people to get moving and do something to get a home hemo program set up and as far as my experience goes; I haven’t run across too many. Don’t like being a pessimist but this is what I have seen.

Thankyou for all the suggestions! Today at tx. as luck would have it the nurse manager of the unit put me on tx., so I asked about the availability of home hemo. No one had offered it to me, and in fact on the bulletin board in waiting area where it lists options, it only lists txp. or pd.
I was told when the certificate of need was applied for no one applied for one that would cover home hemo, and that it was because of the monetary considerations. I know there are start-up costs but it is also my understanding that after a pt. has been on home hemo awhile it becomes cost effective. Perhaps this is one of the myths that needs dispelling!
I also spoke to my neph. who also visited me at the unit today. He is the director of unit. He was apologetic for not offering home hemo, and said he will try to find out if it will be offered. I related to him that if they had a program it would likely draw pts. from other areas as there isn’t a program for miles around.
Marty, You know I gotta get me outta there lol It’s no longer just my physical health we"re talkin about, but my sanity!
In any case, thanks again for the help. I really do believe in the benefits of home hemo, have heard the stories, read the Canadian studies, ect…
The PKD group I help manage will definately hear about this group as there are always people asking about their choice in regards to treatments. Even though it’s not currently available to me I want to make sure others know that it might be available to them where they live. Too, I can write letters whatever in support of more home hemo programs so just point me in the right direction. Ty, Lin.

Lin, I get discouraged but I keep on just because I know how much better slow nocturnal and home patients are. Dad had his 80th birthday yesterday, Pretty good when the nephrologist looks at you and says I hope I am as good as you when I’m 80 and he wasn’t kidding.

Marty, Give your dad a big hug for me, and one for you too! It’s interesting to me that all the people I’ve spoke to on home-hemo have been oh so encouraging. They’ve found something good, and want to share it with the rest of us. No offense to anyone but I don’t often hear in-center 3 x a week pts. saying how wonderfull they feel.
I follow my diet restrictions, have “wonderfull” labs, a “good” hemoglobin, but still don’t have all that much energy, or feel all that great. I even upped my tx. time by 1/2 hr… hoping to feel better. Then there’s the three day a week trek to the center and naps after tx. that take a toll.
A big Happy Birthday to your dad, and many more! Tell him he has a friend in NJ who is very envious!
Also, as I mentioned in another post I co-manage a pkd group, and it’s founder is involved with PKD.Org in the Syracuse NY area, although our members number over 1k and that’s just in the US. I’m telling Bridget about you and this site as she knows a lot of renal pts. in the upper NY area who might be interested in home-hemo. You’re in the Rubin Dialysis Center, correct? Ty, Lin.

Lin, Small World. When I was looking for nocturnal or home hemo and not having very good luck I did find a center in Syracuse that had a home hemo program. I won’t swear to it but I think there were 2. One was hospital based and wouldn’t accept us because of the distance. The other was a for profit free standing and they would take us. The nephrologist in Syracuse called our home nephrologist to ask if we would make a good candidate. When he did this our current nephrologist said yes, but he thought I wanted nocturnal. As luck would have it; this nephrologist in Syracuse knew about the Rubin program and gave me the information on how to contact them. The rest is history. Yes, you can give my name to anyone who will help in the process of helping patients get home hemo. Lucky for the patients in Syracuse they are only about 2 hrs away from the Rubin Center. I know at the present time the Rubin has a patient from Utica which is close to Syracuse.

FYI – In the Home Dialysis Central database, there are two Rubin Dialysis clinics that offer daily and nocturnal home hemo (Clifton Park and Saratoga Springs). Saratoga Springs also offers conventional home hemo. As far as we know now, the only clinic in Syracuse that offers home hemo is DCI and it offers conventional home hemo only. There are 22 other clinics in NY that offer some form of home hemo including 5 that offer daily home hemo and 3 that offer nocturnal home hemo.

I’m very happy to hear that the nephrologist said that you and your loved one were a good pair for home hemo when called by the Syracuse clinic even though it could mean that he/she would lose your loved one as a patient. My hope is that more nephrologists, clinic managers, and other healthcare personnel will advise patients where they can get home dialysis if it’s not possible for the clinic(s) they’re affiliated with to offer any or all home therapies. Maybe if they see that there are interested patients that would be willing to change clinics to get these therapies, more will start offering them.

Our clinic Manager and Social Worker weren’t any assistance in helping us find a home program. But our Nephrologist at the time was super. He didn’t help finding a place but everytime I saw him, he encouraged me to not give up and told me I was doing the right thing. He also assured me that if it didn’t work out; he would take dad back as a patient no problem.

My friend who lives actually north of Syracuse tells me she lives in the middle of no where, but with all those units offering home hemo I’m envious. Her name is Bridget and she is involved with the pkd.org chapter up there so comes into contact with many pts… I will be happy to mention this site, and the units up there that offer home hemo. Sometimes too I find that a personal referral carries more weight; if people hear something is good they will be more likely to apply.
In NJ most of the units listed as offering it either no longer offer it and the info. is old, or when you go to the site they only offer pd/ccpd, and not hd at home. The only unit that took new pts. supposedly was the Pine Brook NJ unit, which is within two hours from my home. They aren’t there anymore, and that was the FMC unit that put roadblocks in my way. Lin.

Marty,
I’m sorry that the clinic manager and social worker didn’t help you locate a clinic offering home dialysis. Part of a social worker’s job is to help people locate resources. In my mind, a clinic offering home dialysis is a resource for a patient who wants to consider this his/her home dialysis options. The only legitimate excuse that I can give is that staff may not know what clinics in their area offer other services. This is why we thought it was important inform people of their options through Home Dialysis Central.

Lin,
To have an accurate database of home clinics, we asked the 5 largest dialysis providers for lists of their clinics that do any type of home dialysis. In addition, 4 of us called all the independent and regional clinics that Medicare’s Dialysis Facility Compare says offer home hemo or PD. From March to June our team called over 900 clinics! We asked to speak with the home training nurse or administrator. Sometimes we spoke with a nurse, social worker, or in very rare cases with the clinic secretary. We asked if the clinic offered home hemo or home PD. We found that many staff don’t think of PD as home dialysis and told us at first that their clinic didn’t offer home dialysis until we asked specifically about PD. Also, we learned that staff working in the in-center hemo unit know little about what their clinic does related to home dialysis. I could tell you stories that would curl your hair. We got the most trustworthy information from home training nurses. I’d strongly recommend that when calling clinics, ask to speak to the home training nurse.

Regarding your comment about NJ clinics no longer offering home hemo…In May 2004, I personally called 33 independent and regional providers’ clinics in New Jersey. Staff at 13 of these clinics told me they no longer offer PD or home hemo even though Medicare lists that they do. Four of the remaining 20 said they offer home hemo. DaVita told us 2 NJ clinics offer home hemo. DCI told us one NJ clinic offers home hemo. I can’t comment on the FMC clinic because we don’t yet have any FMC clinics on the Home Dialysis Central database, but we hope to get their list soon.

If staff at any of the clinics listed as offering home hemo on Home Dialysis Central’s database told you they do not offer it, please let us know. You can do this by clicking on “contact us” on the top of the Search our Database page under Find a Center. Please give us the clinic name, city, and state. We will contact the clinic in question to verify or update our information. Above all, we want visitors to Home Dialysis Central to be able to trust the information provided.

Beth, I went through exactly what you did trying to find home hemo and that is how I got to Syracuse. I literally spent weeks calling all the dialysis centers within a 3 hr. drive from our home. My telephone bill was outrageous
and your right some of the responses you get would make your hair curl. Patients in our area cannot depend on the social workers to help them find home programs. Believe me I have contacted several centers in our area and the social workers just won’t touch the subject.

Hi y’all,

Marty, making it easier to find clinics who offer home dialysis was one of the main reasons we started Home Dialysis Central. Nobody should have to run up their long distance bills calling clinic after clinic just to get the treatment they want. And everyone should know about ALL the treatment options, so they KNOW what treatment they want in the first place!

We’re REALLY excited about the potential to bring folks together, tell people about home dialysis, and help people to get the best care possible so they can live as fully as possible!

Dori, You will succeed in your mission simply because IT IS THE RIGHT THING TO DO.

Hi Beth., Yes, was referring to the info. on the Medicare sites. Often the info. is very outdated and so pts. using such a site will get hopes up only to have them dashed. I hope that units will cooperate and give up to date info. for this site, and too if anything changes will keep the site posted of these changes.
Several of the units I called within two hrs. of my home didn’t offer home hemo…
I really hope units will give info. to this site so that pts. desiring to do home hemo will have that info. readily available and won’t have to rely on the outdated info… I found only one unit listed (within a few hrs. of my home) that offered home hemo (hd) and that was the PineBrook NJ unit, which is no longer there. Although I don’t live in a densely populated area, I’m not that far from other counties that are so I find it curious there aren’t more home programs, and just wonder why not. Lin.

Beth, Are Davita and DCI units that offer home hemo in NW NJ or anywhere nearby? Neither of the units I was at mentioned these, and I couldn’t find any programs in any of the towns listed on this site, at least towns in N. NJ… I’ll try again though. I’m not able to relocate or stay out of town for training like some folks do, but am willing to drive out of county to get to a program. ty, Lin.

Hi Lin,
I wish I knew NJ geography well enough to tell you. You might want to look at the list of clinics that offer home hemo in our database in NJ and surrounding states and plot them on a map. If you feel comfortable posting your county or town, I can email a friend and nephrology social worker who lives and works in NJ to find out if she knows which of the clinics offering home hemo is closest to you.

Beth, You are a sweetheart, and no I don’t mind at all sending you that info… I must mention though that I find it a bit curious (annoying?) that I haven’t been able to get this kind of support (for doing home hemo) in the two centers I’ve been at. The first was an FMC unit affiliated with the Pine Brook NJ center, so if that name comes up know that it’s not an option. They are no longer in Pine Brook anyway, and turned me down because I didn’t think it was right for them to charge extra to do home hemo because I’ve never heard of anyone being asked to do that, and think it was just that they didn’t want any more home pts…
I live in Sussex County NJ, NW NJ. I was traveling to Morris County NJ but we now have a center in county, but they only offer pd/ccpd. I’ve told my new neph. of my desire to get out of center and try home hemo and he apoligized for not offering it to me. He said he doesn’t know why he doesn’t think to do so! I wish the docs who see the postive changes would perhaps share that info. with their colleagues; that would go a long way in making home dialysis more widely available.
Thanks again Beth. I think I’ve found a site of angels! Lin.

Lin, Don’t count on docs sharing information getting us anywhere. I know for a fact the information is shared and has been shared around here and still no one does anything. Doc’s get together they know whats going on. In our area it’s the Medical Directors as wll as doc’s putting the breaks on. In fact if the Medical Directors said we going to have a home hemo program we’d have one. Some doc’s can persuade Medical Directors to start programs other doc’s don’t make waves if you know what I mean.

I know what you mean, and it was really dumb of me to even suggest it (sais Lin. banging head on computer table). I guess the bottom line is, it’s pt’s who do homehemo sharing their positive experience with others who will have the greatest influence on pts. who want to do home hemo, but then there’s still the problem of getting the programs in place. I’ve asked nicely at the unit I’m in, and I will give them some time, but then I want answers. It was supposed to be a choice, and it was supposed to be offered but it wasn’t. Medicare makes rules that it’s supposed to be offered, but if there is no incentive (to the companies) there won’t be any programs. I really don’t live out in the middle of no where, a little rural but not more cows than people, and yet there isn’t a choice. That is why I was so surprised that upper NY state had so much more to offer. I wonder if one took a look at the centers that do offer home hemo programs if one would find a common thread. For instance, do rural areas have more programs, or pts. in their programs because of local, or do more urban areas have programs? or is it just a money thing? Lin.

Lin, It has just one heck of a lot to do with personality and attitude. You will find the people who have the programs are the ones who consider their job to be more than just going to work and punching a time clock they are the type of people who can go the extra mile and not think anything about it and they see dialysis first as a patient issue and then a money issue. The issue of money came up at our nocturnal program. We were told if it didn’t at some point pay for itself they may have to cancel the program. They wouldn’t guarantee it but they would guarantee if they cancelled it we could stay on some type of home hemo dialysis. No one could wave a magic wand and tell them everything was going to work. They thought about the patients first and went ahead and took the chance on the money thing. There are the go-getters and then there is the go-sitters. I’ll tell you something for sure if I ever hit the lottery there will be a nocturnal program in my area and I’ll make darn sure there is a way for you to do it. I would put a machine in your home and send a nurse there to train you. I give the money issue some validity because no one knows if there is going to be enough patients to cover the cost. I’d take the chance but that is just me. I can tell you for a fact it will take me winning the lottery. I offered to put up $50,000 and it wasn’t enough. These guys don’t budge easy.