Hi! I’m a new home training nurse for NHHD, and am disgusted and disillusioned with the modality education in this area. Most of the patients in the in-center clinics I talk to have never heard of nocturnal dialysis. For that matter, I was a dialysis nurse for years before I’d heard of it, and I find most of my colleagues still haven’t. So I’m curious! How did each of you end up contacting a training program? Nate
Internet, internet, internet.
Between bulletin boards, email lists, and google, that is how I found it.
home hemo only
Satellite Dialysis Inc. a non-profit medical organization gave me the information…this was back in early 1980s …
From there I’ve done self researching over the internet…
I was told by a nurse the first week after I started dialysis in 2002 that I might be a good candidate for home hemo. It took me 2 more years after that to ask about getting on it - primarily because at first, a brother was already being tested as a potential donor, and when that failed, it was looking like it might not take too long to get a kidney off the waiting list. Then I got tired of waiting and I just switched. So far, it’s been more than a year, so I’ve already got enough home hemo time to make the training worthwhile.
Whilst surfing the net a couple of years ago before dialysis I came across Prof Agars site http://www.nocturnaldialysis.org/ and was blown away. Suddenly there seemed like hope for a “normal life” while on dialysis. I had been thinking I would start with PD beforehand. Next time I went to my Neph I told him that I wanted to try Nocturnal (we hadn’t even got to the stage of really discussing dialysis modalities then). He organised me to go straight into home training for Nocturnal at my closest centre the day I started dialysis. 11 months later I have absolutely NO regrets! except maybe lack of travel…
Internet – Husband is currently at 13% kidney function, already has natural A/V fistula, has been in touch w/ director of dialysis clinic and expects to train on NxStage when time comes to start dialysis.
Message boards have been the greatest source of info!!!
I hadnt heard of it until I had been in-centre for about 2 weeks, then I was told thats what I was going to do. Glad I didnt say no.
I have to say that my 2-1/2 years on in-centre hemo were not really too bad - and nowhere near as negative as some of the experiences I’ve heard about in this forum. I think that when you start out like that, and you have some good residual kidney function, conventional hemo may be more than adequate. I suspect that dialyzing only 3 times per week might actually help keep that residual function longer. As I said before, I knew about home hemo, but I wasn’t in a rush to get on it those first couple of years.
The internet, the center I first started in keep it a secrete. It was not till I saw it on the net ,( this page) that I talked with soc. worker. He was a big help.
Let me ask : How many pts in center do you think have computers?
I’m not on home hemo yet; the center I’m currently at is awaiting a certifcate of need to start a new program using the Nxstage system.
NO ONE suggested home hemo to me when It was first discovered I needed dialysis; when I started dialysis hd in center pd was offered on more than one occassion but I was told by neph. I wasn’t a good candidate. Eventually they put up a poster saying another unit in the same company provided hd at home and I signed up right away, was accepted, and later turned down because I have my own well and septic and the water tx. was too expensive for the unit to consider; three other pts. were also turned down.
I found out about home hemo mostly from the internet and those who are using it… I have too many ups and downs and want to see if home hemo will afford me more energy and not so many ups and downs. According to anyone I know who does it, it’s better for them than incenter was. Thanks to Marty, John (aka Jfwag) , Ridgerunner, Bill P., and others for advocating for it, and letting the rest of us know about it! Thanks to Dori and Beth. who advocate for it, and set up this site.
The crack about pts. and the internet is right on!!! Most of the pts., and families either don’t have access or don’t know how to surf the net… I added links to sites about it and other dialysis topics to the computer in the unit I’m at but for some reason they dissappeared and now I can’t add any in. The onlly place one can go is to the company site and a poker game :roll: If pts. don’t have unrestricted use of a computer or someone to help them surf the net they will never discover home hemo, or any other information for that matter! Lin.
I haven’t been on the internet lately discussing dialysis. Thankyou for mentioning me in this post. (Jfwag)
I learned much of my experience with ESRD trhough the internet. I remember getting our first computer and getting online. Back in about 1995. Lois was just getting into dialysis, (read my book) and the first thing I did was to research the whole damn thing. We had read through a couple books about diet but that was it.
I found out I was way behind in discussion groups but quickly realized that “Wow” other people feel the same way Lois was feeling.
After time, (and a 1-1/2 bout with PD and peritonitis) we realized home and more dialyysis was the way to go.
I often feel bad that others are only discovering this now since it has been going on since the 60’s. Or at least that more dialysis is better.
In short it was the internet that made a difference in Lois’ and my life.
I hope you can get a home situation. It sometimes is not easy but we were lucky to have such a great neph. and unit. (Taunton Fresenius Dr. Lauer) We were the first in that unit to be trained from step one to bringing a machine home. Pat Lundrigan was our nurse and at last I knew she was running Fresenius’ home unit in Lexington, MA. (Freseinus’ corporate HQ’s)
Nowadays, of course just GOOGLE everything or ASK.COM.
Home Dialysis Central and Dori have provided an impressive internet location and educational spot on the internet.
Education and passing HR 5312 is of course parramount. Can you get your congressman/woman to co-sponsor?
Hi John, Well, I sure can try; I understand it’s being changed/added on to; is that correct? Should I submit a form letter or one I’ve written myself? Which in your opinion gets more noticed? I’ve sent letters both ways in the past but never knew if they made a difference or not. At one point was advised to sent emails instead because of the Anthrax thingy.
Nice to see you around again! You are one of those who made me believe I can do this, so I thank you for all your encouragement. I’m sure Lois is looking down and is soooo very proud of you for continuing to fight and educate people to the possibilities of home hemo. Wanted to email you today but MSN must be “working” on my hotmail because I can’t do a thing with it. Lin.
I’m surprised you weren’t told straightaway, Amber, as even tho I was pretty far gone & in a befuddled mental state (thank God my wife was there to make decisions!), I still remember being told about the patients on home haemo & how it was “the way of the future” (Dr.Isbel), the first long day I spent at the renal unit.
'course I then went on P.D., as they had an op. position ‘spare’ the following a.m. & I went straight in. But as soon as it was decided I neede to go on H.D., I was put on the list to train for H.H.D.
To make it easy to send letters to your elected officials about proposed legislation, Home Dialysis Central has a Legislative Action Center. If you type in your zip code, it will find your elected officials.
We created a letter that you can send as is or modify to make it “yours” by why you support the bill. Your letter will be emailed to the appropriate legislator. Look on the Legislative Action Center for H.R. 5321 (the third bill listed) under Issues and Legislation.
From this link you can also find:
– Elected Officials
– Elections and Candidates
– Media Guide for national and local media
Thankyou Beth! Lin.
I found the “Action Center” html code for my site… Just added it today! If you look on the left-mid hand corner facing the screen you will see the quick links there…nifty feature!