They Pulled The Catheater :(

I’m glad you’re still trying, even though this is all very difficult for you on a number of levels. If it works, you’ll know that you saved his life. And if it doesn’t–for whatever reason–you’ll know that you did everything in your power.

Incidentally, the only center that we have in our database in Binghamton NY (United Health Services) only offers PD (not home hemo)–and their information was unverified. If they now have a home hemo program, or if there is another home dialysis program in Binghamton, please ask them to update their information so we can help others to find them.

Peg is the one to speak with at this Binghamton home hemo center or whatever you would call it…607-762-2285.
When she calls me back I will relay your message.

I’m sure it seems like this is the end of the line for your ward. However, it doesn’t have to be. A PD nurse told me that unless his peritoneal membrane has been damaged too much by the infection to transport wastes, if the staph can be treated and cleared up while he’s on HD, it may be possible to reinsert the catheter and try PD again. However, it is essential to clear up the infection and be sure that he doesn’t get reinfected because staph is in someone’s nose or on someone’s skin.

Did the dialysis clinic ever test to find out the kind of staph infection he had? Knowing the type of staph infection would help the doctor and PD nurse know where it came from and what to do to prevent it from happening again. It’s possible that if others were doing his exchanges for him, they may also be staph carriers too.

Did the clinic swab the noses of everyone who did PD exchanges for your ward? If anyone was found to have staph in his/her nose, there is an antibiotic ointment that can be put in the nose to control staph infections and reduce the chance that the infection can get on the catheter or in the peritoneal cavity.

Another thing that may increase his risk of getting infected is a low albumin level. It’s hard for PD patients to keep their albumin level at 4 or above. If someone on PD doesn’t eat enough protein to overcome the extra protein that PD removes, his/her protein level can drop below 4. Having an albumin level less than 4 increases the risk of infection. The lower the albumin goes, the higher the risk of infection. Increasing protein intake can increase the albumin level and reduce the risks of infection.

So far as financial help if you want to learn how to do home hemodialysis, if your ward is on Medicaid, state Medicaid agencies provide financial help to pay for transportation to/from dialysis (including home dialysis training). Years ago I had a Medicaid patient who lived some distance from our clinic and Medicaid helped to cover lodging. I don’t know if this is a covered service in your state (or any state) now, but it’s worth asking. Also, it’s possible that the clinic has made arrangements with a nearby motel for a special rate for families training for home dialysis. That’s also worth asking about. As Dori mentioned, the social worker at his dialysis clinic may know or be able to track down information about local resources to help cover costs that you would have while learning how to do his home dialysis. Some National Kidney Foundation affiliates offer emergency financial help, the American Kidney Fund offers financial help (social workers have applications for both of these), sometimes churches or local community organizations can chip in to help pay part of the costs. Since you and your husband probably already know the basics about kidney disease and treatment, documenting treatments, reporting problems, it may not take you or your husband as much time to train if all you have to do is learn how to operate and troubleshoot the machine, emergency procedures, and how to do needle sticks. You might want to ask your tax advisor if the expenses you have while he’s in training would be tax deductible as medical expenses. That won’t help you this year, but it could help next year.

I have talked with a few nurses that train patients for home hemodialysis who are willing to go to people’s homes to train patients. I don’t know if there’s anyone that offers this in your area. There are also some dialysis centers that offer “staff-assisted” home hemodialysis, so you might ask clinics if they offer this service. Medicare doesn’t pay for the person who does the dialysis though so that would be something you’d have to pay for unless he has insurance or Medicaid that would cover it.

I will talk to the Dr. about all you said in the near future…today we are in the midst of a blizzard :slight_smile:
I just received a call from Peg at the Binghamton Home Hemo clinic, the closest one to us, (75 miles), and she said there was a meeting and they are “selective” in who they take on and beacsue they are “new” they want to be successful so they would not be able to help us now or in the forseeable future with our man.

You can’t imagine how sorry I am to hear that!

Meanwhile…I looked on the Medicare website at Dialysis Facility Compare. This government database lists the following clinics within 80 miles and says they are certified to offer home hemodialysis training. None of these clinics is listed on our database as offering home hemodialysis. When we called clinics to establish our database, we found that the DFC list was not accurate about 25% of the time. However, you might want to call these clinics. If any of them do offer home hemodialysis, please ask them to let us know. They can do this by visiting and looking under Find a Center to Add or Edit their listing. A basic listing is free and lets people like you know how to contact a clinic when they need one.

ITHACA, NY 14850
(607) 273-9111
37.1 miles from Painted Post

VICTOR, NY 14564
(585) 742-1250
57.9 miles from Painted Post

67.7 miles from Painted Post

69 miles from Painted Post

62.7 miles from Painted Post

79.1 miles from Painted Post

78.2 miles from Painted Post

I will do that. The United Health Services in Binghamton is the one that called me and told me that theyt were “Selective”. I will try the other #'s you provided.
Thank you,

Unregistered, I don’t know who you are but I am in your area. I live in Wellsville, NY which is about an hour and 15 minutes from painted post. Sayre is starting a home hemo dialysis program very soon. I have been doing nocturnal hemo at home for 6 years out of the Rubin Center but Sayre has been our backup when ever we have problems as it takes me 5 hrs. one way to drive to the Rubin and Sayre is only 2 hrs. for me. I think they will be training their 1st patient in about 3 weeks. Bradford would be a drive for you but they offer NxStage and Fresenius and like eveyone says. Once your trained you only make the trip once a month. Who is his nephrologist at Sayre? Hasn’t anyone told you they are starting a home hemo program?

Beth, Binghamton is offering the NxStage for home dialysis. Unregistered 1 of the centers in Rochester is also offering NxStage although I don’t know which one. Sayre is only going to offer the Fresenius and by the sounds of your situation NxStage would be a better fit. Less training and less time involvement at home. The nurse at Bradford that will be calling you will know the center in Rochester. I’ve talked to her and she’s the one that told me they had a program. I do believe Rochester would be a lot closer for you than Bradford.

I was reading this very troubling story, I just hope that whoever the lady was got the needed help she was so desperately seeking.
I ccurently have a brother on Dialysis, my mother whom is now deceased was also on Dialysis. It is really interesting how I came across this story.

My old High school girlfriend (we graduated in 1977) just recently became reaquainted and her neice and my daughter were good friends growing up, but whom also lost touch for whatever reason. Well her neice is on home dialysis and there was a feature story on her doing dialysis. That’s how I happened on this story,

I hope she will update with good news.