At the Medical Education Institute, we’ve given a lot of thought to how to increase the number of folks who have access to home dialysis of all kinds. And we have our ideas about what the barriers are that keep people from doing home treatments. But, we haven’t lived this, and you have.
I’d love to hear about your path to home treatment–what treatment you first picked and why, and how you learned about home dialysis, why you decided to do it, and how easy or difficult it was once you decided.
Basicly, even a no brainer knows! Plain simple, accessibility…dialysis shouldn’t come complex, large packages…
Economics is another thing, dialysis should be economically viable and friendly…
Dialysis should be compatible with everyone’s life style…
Dialysis should be easy…
…Back in my early years(I was 13 years old)…home dialysis was introduced to me by Satellite Dialysis Inc…I was trained with an older larger machine and did it for almost 2 years…eventually, my partner got married and was left to go back to clinic…that’s one barrier that kept me from continuing on my own at home. Another barrier was the complex maintenance…
Anyway, that didn’t stop me from persuing dialysis at home and I continued researching home dialysis until I found Aksys…that really facinated me and was my first choice…from there Wellbound introduced to NxStage System One and I did further research between both Aksys and NxStage and my final decision was NxStage…
If you’d ask why I chose NxStage, it was the most economical choice for me…less resources needed to operate, I didn’t need to heavily modify my home to use this and I didn’t need so much water resources. It was a money saver for me. It was a machine that I can take with me on trips, easy to move around…
I do hope that NxStage continues making this machine lighter and smaller…it would be a dream come true for many of us losing our kidneys…
First my father wanted to do dialysis at home. Second I read about home dialysis and nocturnal dialysis from patients on the brumley board dialysis on-line so I knew it was possible.
The first barrier that I ran into was the no one at our center knew or could direct us to a place which had a home hemodialysis program. Consequently this left the search up to me.
The second barrier I ran into was finding a program. The government website was very inaccurate and I spent many, many months calling units to see if home hemo was really available.
What could have been a third barrier was distance…The closest unit was 3 hrs from our home for 3x a week home dialysis. It was just by luck that this dialysis center knew where nocturnal was being offered and gave me the name so I could go further in my pursuit for nocturnal home dialysis.
When I contacted the nocturnal program, because of distance…I was required to have a nephrologist in our area for dad. This did not prove to be easy… The dialysis center dad was affiliated with refused to let his nephrologist send him there for backup treatments if we switched centers.
So I called all the nephrologist in our area and finally got one who would agree to see dad in our area. This was really tough because when I called to get the nephrologist no-one even understood what I was doing or why? I usually couldn’t get past the nurse or whoever answered the phone to even talk to the nephrologist. Finally I got a break and a nephrologist called another nephrologist for me and we got a nephrologist at home.
This could have been a barrier. Due to the fact there were no programs close it meant moving to train.
This also requires some money and this could be a barrier.
The last barrier was courage. It took a lot of guts for me to take dad to a place we had never been, live there for 6 weeks, trust people we had never met, and then get the nerve to learn and do the treatments. Had I been doing this for myself and not my dad, I think I would have given up when I found out how difficult it was going to be to even find a place offering home hemo.
Things have gotten better though because programs are opening up alot closer to home. I think there are about 4 now within a 100 mile radius of us. I know this thanks to home dialysis central listings.
Thanks to the internet we are where we are now.
Moving ahead to the present time. There now are programs within 100 miles of us; I think 4. Thanks to the home dialysis central listings I found 3 of these and heard about a fourth one from 1 of the 3 I talked with.
The BIGGEST barrier in our area is the centers don’t know about the daily and nocturnal program or where they are. Consequently when a patient asks about home dialysis they are told we offer PD, you ask about home hemo and they simply say they don’t know about it and they don’t.
It would be nice now that more centers are opening for daily and nocturnal home hemo programs if a little pressure couldn’t be put on centers who don’t have programs to at least have to be able to educate patients on those programs and let them know the closest ones available.
Thanks so much for your very articulate stories about how you made home treatments work for you. It’s obvious that there are lots of different sticking points (having a partner, finding a local doc if the training program is far away) that can stop folks who aren’t as persistent as you both were.
Marty wrote:
It would be nice now that more centers are opening for daily and nocturnal home hemo programs if a little pressure couldn’t be put on centers who don’t have programs to at least have to be able to educate patients on those programs and let them know the closest ones available.
I couldn’t agree more. People can’t ask for a treatment they’ve never heard of. And beyond even centers telling people this after they’ve already started on in-center, what’s also important is to reach out to folks who aren’t yet on dialysis so they know what their options are and where to find them before they give up their jobs & health plans, lose their homes, etc…
Please keep the stories coming–they’re really helpful!
I had met someone when I was 17 that had a dialysis machine at home. He had to have a nurse/tech come in when he was on it. That was the first and last time I would hear about home hemo for another eight to nine years. Things were getting bad for me and I told my partner about the guy I met when I was 17. He said that if I had to go on Hemo he would figure it out. I was on Capd at that time. Well I went on Hemo and my partner started asking people about home hemo. At first the people at the clinic were like"WHAT???" . As if they had never heard of Home Hemo and that it was not an option. Then one day a nurse pulled us aside and mentioned some place she had heard of called Wellbound. That they might do home hemo. So then we started asking about this wellbound place. No one knew anything about it either. My partner found Homedialysis.org and found a wellbound near us. He had me call them and set up a appointment to meet them. At first it didn’t look like we would be getting in for about a year. I was about to have my PD cath removed and put on in center with a perma cath(quinton). A couple of months went by, a fistula blew and I had had numerous horrible hospitalizations. My perma cath was not working very good either. My labs were way out a wack and I felt horrible. So my partner got me to call wellbound again and pitch my sob story to them. The nurse said she would make some calls and maybe they would get me by the end of summer. Luck had it and training started in June this year…
LSB
You make a very valid point about patients not loosing everything before they can start home hemo. I had my own business which I ended up closing just because of dialysis. I drove dad to center 3x a week thus not being open for customers. Then add in the other doctor appointments and the hypotension episodes and I couldn’t stay available long enough to make any money. When we went to train, I obviously had to close for 6 weeks. By the time I got back the effort I had put into getting dad on home dialysis and the fact I had been without my income for so long I never reopened.
I have run into wives who have had to give up their employment just to get their husbands to treatments. In a rural area it is not unusual to drive anywhere from 20min. to an hr. to reach a center. When you have an in-center patient who is weak and not feeling well, the drive is just to long to trust them by themselves.
I don’t think much attention is paid to the loss of wages of family members. One of the biggest “shocks” I got when we started down this road was finding out that not only is the dialysis patient giving up employment to get in-center treatments but it was branching out to the wives, mothers, husbands etc. When I asked our center how other families dealt with the situation, I just got a blank look. Then I realized dialysis was going to take over my business and income and it was going to be my problem.
I totally agree more upfront information needs to be given before everything is lost. I also think it would be interesting to know just how many tax dollars are lost by other family members giving up jobs.
LSB, thank you so much for sharing your story! I’m glad Home Dialysis Central was able to play a small role–and that you were fortunate enough to keep that idea of home hemo in your head for all those years, and to persuade WellBound to help you achieve it.
Marty, the financial impact of ESRD on families is something that Beth and I are very, very concerned about and don’t believe is getting enough attention from the industry. I’m going to start a different thread for it, because I want people to be able to find that topic again.
Well I was so lucky then…apart from a ‘wasted year’ on P.D.
I had initially been asked if I wanted to go to Haemo straightaway (I didn’t fancy the necklines to start off! :shock: ), but in retrospect, maybe I shouldn’ve ‘wimped out’ …and as soon as you go to Haemo, you get asked if you fancy home haemo and do you fancy going nocturnal, as they had been running it for about 18months (nocturnal; I think daytime had been there for longer). So after the year, when I did go to it, the first thing they asked at the Home Training unit: “you will want to do nocturnal, won’t you!?” :o
Perhaps the ancestors are looking after me, in some odd way.
Apart from this past week, I’ve been pretty good on nocturnal!
The disturbing part is how my CAPD nurse pulled us aside and as if she was telling us top secret info. She told us about home hemo and some place named wellbound. Then when we mentioned it in front of another nurse. The nurse that told us about it was like “wow they do home hemo”. We didn’t blow her cover though. We acted like we found out about it on the internet.
LSB
I’ve been looking into other site and such. I tip my hat to the folks who run this board. Without It and a part time soc. worker, I would never have found about home programs. The first center I was in had a hard time giving you the time.
For me it was not question about going home but why home was not and is not pushed. Why dialysis has been left in the dark ages? The only thing I can think it comes down to money.
When I was in center it cost my insurance company $50,000.00 a month and $880.00 a month for the doctor to check my name off the here and present list. I have not seen the EOB on the cost for home yet outside of the doctor bill it cost $600.00 to see him once a month for 15 minutes. I wrote my rep in washington to see if I could find out why the cost is so much he has not gotten back to me as yet.
bobeleanor :?
When I was in center it cost my insurance company $50,000.00 a month and $880.00 a month for the doctor to check my name off the here and present list.
Hi Dori
I put off thinking about dialysis for years after I was diagnosed. It all seemed too scary. In the back of my head I thought I would do PD as it “sounded” simpler and less wearing on everybody, but when I was a year out from dialysis my Neph told me I had better get my act together. The more I read and when I finally saw someone on PD I realised it probably wasn’t my thing as I love all things to do with WATER. I also love TRAVEL but the WATER won out!
I had one visit to see a dialysis unit before my time was up and thought straight away I am doing this at home. I had read Agars Nocturnal website over and over and it was then a “no brainer”
Having just come back from a holiday where I did two 5 hour dialysis sessions in a hospital after much hassling and many phone calls, I KNOW I made the right decision to do home Nocturnal. Numb bums and boredom, those guys do it real tough.
Cheers 8)
…and as soon as you go to Haemo, you get asked if you fancy home haemo and do you fancy going nocturnal, as they had been running it for about 18months (nocturnal; I think daytime had been there for longer). So after the year, when I did go to it, the first thing they asked at the Home Training unit: “you will want to do nocturnal, won’t you!?” :o