How far would you drive to get home hemo?

pat,
It is great that you finally got accepted into a program. Will this program be a distance from you and will you have to travel a distance to see the nephrologist monthly?

Jane, We were extremely lucky. My husband has only been on dialysis since October. One of the nurses at the dialysis center where my husband dialyzes suggested we look into home dialysis because hubby has gone through 2 bouts of sepsis already.I really didn’t even know this was an option, it was never mentioned. I went on line and found this board which is where I am getting my education. (thank you all) We know the center is not where we want to be. I know all of the centers are probably not the same, but where we are it is the most depressing atmosphere. We would travel cross-country if we had to, to get home dialysis with the machine we want/need. We are in a rural area and water usage is an issue–we have a well. After reading about the different machines, we think the NxStage is the way for us to go. Water usage is no longer an issue and the portablility of the machine is a huge advantage for us. My children live in 4 different states! Toms River or the Massachusetts site are both about 3-3 1/2 hours from us. We will rent a apartment for the 6 weeks of training-Toms River is by shore points in NJ and places can be rented for a month at a time. Yes, we will have to go to the nephrologist every 4-6 weeks from what I understand, but to have the flexibility home dialysis affords, it will be worth every mile traveled, for us. There are many clinics that train for home dialysis that you can check into. The reason we have chosen this site is because this is where we can get the NxStage. You can look for other clinics that use other machines on this site. Our decision is strictly personal preference. There are many others on this board with lots more information that I have, I’m a neophyte and just learning about this. I’ll be happy to share the journey with you, though.
Pat

Pat – I too have been hounding Nxstage for training close to us. However, I wonder why you can’t see your own Neph.in town instead of traveling back to the training site to see neph. I am searching for a place within 4-5 hours of us for training and was hoping to continue with a local neph. my husband is on hemo for 4 years after a 21 year transplant failed. the ease and mobility of the nxstage is what we are after. retired and ready to travel.
joanne

In response to Helpmate…
In most cases, when a patient chooses a nephrologist, the nephrologist refers the patient to a clinic where he/she has patients. If the patient chooses a clinic, he/she generally must choose one of the doctors that practices at that clinic. If a patient changes from one clinic to another, unless his/her MD practices as both clinics (or can get practice privileges), the patient will probably need to change doctors.

These are some practical reasons that I can think of for this:
– Training and set up costs are high and the only way a clinic can recoup the costs is by following a patient for at least a year following training. Therefore, I suspect the clinic that trains the patient would want to be the clinic that follows the patient.
– At clinic appointments patients don’t just see the doctor. They see the nurse, the dietitian, and the social worker. This allows the patient and staff to feel like the clinic is caring for the “whole person.”
– The nephrologist must order home training, prescribe home supplies, and be on-call to the home training nurse while the patient is in training and to the nurse and patient following training. If the nephrologist has no experience with home hemo, this may be difficult for him/her to do.
– Clinics must be able to show they have qualified and competent staff. Relationships and trust exist between the nephrologist and training staff that may not exist with nephrologists elsewhere because of lack of knowledge and/or contact.
– Nephrologists without experience with home hemodialysis patients may feel uncomfortable allowing a patient to be in as much control of treatment as home dialysis allows.

There are probably other reasons I haven’t thought of that someone else might want to add.

A company called WellBound on the west coast is working to establish relationships with doctors and has a few regional training centers for home dialysis (PD and HD). I’m not sure what their long-term plan is but maybe the regional training site idea will catch on this and will allow more patients to keep their doctors when they must go outside their usual clinics to get training.

In the meantime, let the current nephrologist know you’re so serious about getting home dialysis that you’d change doctors even if you would prefer to stay with him/her. Who knows…Maybe your doctor will convince your clinic to start a home dialysis training program or will see if it’s possible to get practice privileges at the other clinic. Keep in mind though that even if you see your doctor locally, you should expect to go to the home dialysis clinic to see the other staff.

I am actually with Wellbound. They are about an hour’s drive away from me. They did allow me to keep my local nephrologist, although to be honest I get probably more from their doctors than my own although I’ve never met them. However, I do still need to go in to the clinic once a month to review my treatments, get a quick check-up (they check b/p, temp, look for any edema, and listen to heart and lungs - more than my neph has done in 3 years). I also see the dietician and the social worker. Since they are much more involved in my actual treatments and dialysis than the nephrologist I would think these appointments would be very important.

I can send all my daily dialysis logs via computer and could get my blood results and talk to everyone by phone, so if it were a much longer distance, and provided you had a doctor who would do the actual physical checks monthly, I would say maybe doing a monthly check in by phone with the clinic might be a good compromise.

I am not positive on this but I was told by our home hemo administrator we have to go back to the clinic for visit every 4 to 6 weeks. New York State law requires the physician in charge of the home program see the patient. Because of the distance we also see a nephrologist closer to home every 4 to 6 weeks. This is in case something happens like a broken leg. A nephrologist in our area is familiar with the patient and his dialysis.

we travelled 3748 miles to have nocturnal dialysis

wow! I think you must have the record! and I bet it was worth every mile.We can’t wait to get started. Looks like it will be the next week or two.

Pat

Hi, all
Well, we’ve had a minor set back. We were unable to start 1/3 because Chuck ended up in the hospital with cellulitis. Got out 1/7. Back in 1/10 for SVT. Now has an ablation scheduled for 2/5. They can’t do that until the catheter is out of his neck - scheduled for next week- and it has time to heal, just in case they over-zap him and he needs a pace maker. We are terribly disappointed that we were unable to start, but look forward to rescheduling. Will let you know.
Pat

Soleilemoon, Glad to see your from Utica. 1st person I’ve met that is in my area. Your about 3 1/2 hrs from where I live. The Rubin Center does nocturnal at Saratoga Springs or Clifton Park. They have a center in Troy but it’s not for training nocturnal. My father is a dialysis patient and we were trained in Saratoga and have been in there program over 4 years now. It was my understanding at least at one time they had a patient from Utica in the program. By the way they will also train patients on the Aksys for daily use.

Marty-

This is actually soleilemoon, aka Mary. I forgot my old log-in info. I actually live in the DC area now. I was in NY for a week at Christmas. I searched high and low for treatments at any dialysis center from Oswego to Albany and south to Oneonta. The only two places that could accomodate me were Amsterdam (where I ended up going) and Rubin (unfortunately, they don’t take Blue Cross) I wish I had known about Rubin when I first went on dialysis in NY in 97- I would have figured a way to get there!

Yes, I also am glad to see a upstate Ny’er on the board!!!

Mary :stuck_out_tongue: