I think I found a unit!

I just went down the list of units again, putting in all the towns within three hrs. from my home and was just about to give up (all had pd programs, but not home hemo) when I got to P for Paterson. Since it was recently added to site I have only to believe they currently have a program.
I called but it’s 6pm and no one was available, and was told to call back tomorrow at 8. They told me to call the PD department, so just wanted to mention that in case others need that info… They said to ask for ext. 6400. Oh gosh, I do hope this is good news for me. It’s not a slow nocturnal program, but beggers can’t be choosers :lol: Hey Marty if you win the big one now you may have to find something else to do with all that loot. If I can get into this program I owe you big time! Lin.

Lin I hope this unit can support you at home. The results from Tassin show that three time a week nocturnal dialysis patients have very good outcomes.

Lin, Boy Lin this is great! If we lived closer to together we would go out on the town on this one. Lin you have a good start. It may not be nocturnal but you can run longer if you think you need it and your in the drivers seat now.
Made my day.

Marty, Bill, Thankyou both! You may sometimes wonder if your help and encouragement make a difference, well wonder no more. I know you may think you have to meet a person to make a difference but that just is not so. When I first started dialysis I would read your posts and well quite frankly was jealous. At the time I felt horrible (misjudgements in my tx.) and thought I was going to be alive, but not living. Although they said to me “you look great” it belied the way I really felt, but not unlike the two of you I’m just too stubborn to give up. I kept telling staff and doc. that I was tiried all the time and didn’t feel “quite right”, but after not finding anything wrong, and hearing all the time how great they think I’m doing, I just kinda gave up telling anyone a thing, just saying “I’m ok”.
It will be my birthday this month and I’m hoping home hemo can be my present. Just wanted you both to know I consider your help support a gift too. If this thing flies will do for others what you have done for me.
Marty, You must have read my mind! It was my thought too that I could do longer txs if I wanted, I figured I would add at least the amt. of time I wouldn’t be spending traveling to and from unit, and do the txs. when more convenient for me. Well, getting ahead of myself now. Gotta find out the scoop first, and find way to Paterson. TY Lin.

I called the center in Rochester, which is 2hrs from our home. They don’t have a nocturnal program but they are very interested in taking dad and I as their 1st patients for nocturnal because they have been talking about a program for a sometime. There are many a slip between the cup and the lip so I don’t know what is going to happen but at least were talking.

Lin, did you read about the Paterson clinic on our home clinic database – the clinic that offers conventional home hemo? The phone number we have listed is for that clinic is 973-569-6400. Ask for Lorraine or Yoo-Hee.

Marty, what clinic is considering starting a nocturnal home hemo program? You’re so gung-ho, I’m sure you could convince them to start a program if anyone could. If the clinic starts a nocturnal program, please ask them to use the “Edit Your Listing” option under “Find a Center” on this website. We’d like others to be able to find clinics that offer nocturnal home hemo programs too.

Good luck to both of you. Please let us know what happens. We love success stories!

Beth it’s on your site. Under NY it’s in Rochester. It is listed as having home hemo and I was dubious so I called them. I had contacted Rochester several times in the past and they said they didn’t have a home
hemo program. I am still not truly convinced a patient could even get homehemo through them as they only have 1 patient that is doing it and I think she is a hangover from the past. Over 8 years ago they had a program. Then they fazed it out. They had a nurse who’s husband went on dialysis and to my knowledge she is the only one they kept in the program. Anyway I called to check again, I only ask if they would allow us in to the home hemo “conventional” program. I explained to them dad was a nocturnal patient but I was checking to see who had home programs in case at some point dad couldn’t make the 287 mile trip. She hedged and said I don’t know we only have 1 patient doing home hemo; I’ll check and get back with you. She called back and said we have been talking about starting a nocturnal program and wonder if you want to do that? At this point, I am not sure if the people I am talking with have any influence in getting a program started and I am not really convinced they are interested in expanding their home hemo program. However they are at least talking as they said they would call me back within a week. I will keep you posted on the status when I get to the bottom of it. I’d like to believe I could be convincing but in all honesty my track record isn’t good.

Yes Beth., I found the Paterson program on this site. When I first decided I wanted to get into a home program I went the route I thought was best. I believed the “fluff” that I was handed about staff being there to help me, blah, blah, blah. Home hemo would benefit me, but it wouldn’t benefit them if I left as I had very good private ins. paying over 13k per month and they didn’t want to lose that. The first unit I was at was about 1 1/2 hrs. away from the Paterson unit, and you can best believe someone in the Dover unit knew they had home hemo… but didn’t want to steer me in that direction. No one said that to me, but the handwriting was certainly on the wall.
The Medicare info. was often outdated, which I found out when making phone calls to units only to find out they no longer offered a home program, or offered pd not hd at home.
Had it not been for St. Joes putting the info. on this site I would never have known of the program. I still don’t know if they will take me or not but I’m hoping, and won’t know till I try. I think the skills I’m acquiring trying to get “my choice” might translate into a job lol It’s still early here but I’m calling St. Joes this a.m… Thankyou so much for your help and encouragement, and too for this site. I’ll be sure to tell staff at Paterson where I got the info. on their program. Will let you know how things go.
Husband has even offered to take vacation time and go to unit with me. To be truthfull I think he’s afraid I will get lost in Paterson! Lin.

Hi y’all,

Beth put together the new database for Home Dialysis Central, so the info in it is different from the Medicare database (that one includes clinics that are CERTIFIED to do home dialysis; ours includes only clinics that are actually OFFERING these treatments).

We had to develop inclusion criteria when we put the database together, and one of those was: clinics can only be included as offering home dialysis if they are TRAINING patients. So those clinics that are still following a couple of people who started 20 years ago are not included unless they are willing to take on new patients. : )

Dori, I’ll get back with you and Beth and let you know if Rochester, is really training new patients. Maybe there just getting ready to start to again. But I know if you call the number you have listed you get the PD department and they tell you they don’t know if they have a home hemo program and will call you back. I also know the Strong Memorial Website doesn’t list home hemo as being one of their dialysis option. Maybe they just decided to start again and not everyone is on board. Maybe they just want to be real picky about the patients, I don’t know. As the old saying goes it all comes out in the wash let you know more if they call me back next week.

Thanks Beth for putting together a search site that really works, and nets results!
Dori, I think perhaps the way you described how it was put together should be put in a post to other sites. I know how infuriating it can be to call umpteen units only to be told “sorry we don’t offer home hemo anymore”. If others could just come here and find a unit one, two, six, , and know that the info. was up to date, that would be super. I’m going to share the link wherever I go!
On another note: called St Joes today but got voice mail to home hemo… waiting for a call back… Lin.

Actually, I wasn’t alone in putting together the database. We had a great team of folks. Kristi worked with a database programmer and she and Dori got lists of clinics from corporate sponsors. There would have been no way I could have made 900+ calls without Denice and Amy and they both deserve a lot of credit for the database content.

Like Dori said, we knew we wanted to have clinics that are actually training patients to do home hemo or PD vs. those that are following an occasional patient with little or no interest in training a new patient. We talked to some clinics that told us they were not offering home dialysis or were considering offering additional home treatments and we asked them to let us know so we could update our database rather than including something that wasn’t yet available.

You can’t count on websites for correct information about clinic programs. We looked at many a website when contacting clinics and found that they focus almost entirely on center hemo, occasionally provide limited info on PD programs, and say nothing about home hemo programs when they exist. I told staff that their home program was not mentioned on their website and they often had no knowledge that there was any information about them on the Internet. Many didn’t know that Medicare publishes a listing of dialysis providers or that Dialysis Facility Compare exists.

FYI - Some clinics that train home hemodialysis patients do this through their “PD department.” I’ve worked in clinics that offered PD and home hemo and the nurse was called the home training nurse (not PD nurse) and the department was called “home dialysis.” However, since most home patients are on PD, the nurses that do home training may be called (or even call themselves) PD nurses so don’t let this stop you from talking with that staff member. If he/she doesn’t train patients to do home hemo, ask who does. If you find errors in our database, please ask clinic staff to let us know.

In the case of Strong, if I remember correctly, I spoke with the clinic manager or administrator. She gave me the names of the two nurses that people could talk with about PD or home hemo. However, since I had so much trouble in some clinics finding out the straight scoop about what home treatments were offered, I have been concerned that the person answering the phone might not know what home treatments are offered and could say it’s not offered. Be persistent. I now believe that in-service training for all clinic personnel should include a section on “services we offer.” This way if anyone answers the phone (amazingly, clinics may not have a designated person to answer the phone so any staff member who’s available is supposed to answer) he/she could direct those calling about home therapy to the home training staff.

If there is a mistake about Rochester, I’ll ask them to let you know.

Yes, when I called St. Josephs Hospital I was told to contact the PD department at ext. 6414. The unit I’m at only offers pd and I think they only have one pt. so far and so the PD nurse is now on floor training for hd… I’m pleased that it’s listed on this site. Still waiting for call back from the training nurse. Lin.

While I was at tx. today Arlene left a very nice message on my answering machine telling me the home training nurse would contact me next week to talk to me and see if I’m a feasible candidate for doing home hemo. If it hadn’t been for finding the program listed on this site I would not have known about this opportunity! Lin.

Lin, So glad you got the call and things are going along. Do Keep us Posted.

Well maybe there aren’t actual roadblocks, but it seems there sure are a lot of “speedbumps”! The training nurse called me yesterday. She said she hasn’t trained anyone in a long time, there aren’t any pts. in the program now, and the fact that I don’t have city water and sewer would cause a problem. It would also be a problem because I would need a training partner for backup as they don’t have any kind of monitoring system, phone or computer. I and backup would be pretty much on own.Husband is very supportive, willing to learn to cannulate and being the type of person he is already has the machine figured out, but just can’t take off from his work for three months of training. Nurse also suggested that I live too far away from the unit. The program uses Baxter machines, but their unit uses the FMC machines and she must check with Baxter to see if feasible for me to use their machine. She suggested I contact “a company that provides home hemo” and (get this Bill!) gave me the phone number and web site for AKSYS, telling me they offered home hemo. Of course, it’s just the co. that markets the machines, and so it seems I’m back to square one. Lin.

Lin, I think your post is doing one thing it SHOWS the PROOF that patients are not given the opportunity for home hemo nor are they given ANY help in getting the opportunity for it. I still haven’t passed judgement on Rochester but my gut tells me; when push comes to shove it will become clear they don’t have a program or want patients either. I just wonder why in the heck they even play the game. It also shows how ridiculously stupid alot of the dialysis staff are that patients are suppose to rely on. I know my manners here aren’t the best but at some point some one has got to call an ace and ace and a spade a spade to get out of the circle of deception. I am rather fed up with “excuses”. Arrangements can and are made to help patients do home hemo it just takes people who care and have that as their objective. I’ll never forget when I called about nocturnal. I knew I had a winner when the program director said well if we have a problem we will just have to figure out how to fix it.

This is why I think at this point Rochester’s information is Bogus. When I asked who they had for machine maintenance - no answer. When I asked how they handled the water - no answer. Well if you don’t know about these 2 items you don’t have a working program. The lottery chances are 1 in billions but at least you can count on 1 winner.

Lin this is what I mean when I say it’s the people. The person you spoke with mentioned problems. These aren’t problems without answers. First of all you don’t need city water and sewer RO’s handle water problems. We have patients in nocturnal with their own wells. They can’t use DI tanks but they can use RO’s. To far away - to far away for what. You call them when you have a problem if they have a real program available they are suppose to have a trained nurse for their home patients. Home programs require a partner not to learn the whole procedure but to be there in-case something happened that you needed help calling 911 or calling them. In most home programs patients aren’t allowed to run unless someone is in the house. Remember the dumb neighbor story ridgerunner told us. They could work with you and your husband to make it possible for him to learn how to handle the needles for you. For God sakes once your home you could teach your husband what to do to set up the machine and rinse jugs etc. if you felt the need too. You just got fed a line of BS. I am very confident it what I am telling you and if someone can prove what I am saying to be false…bring them on.