You say what!! 10 NxStage machines in London already? Any possibility you can be one of the participants in those trials?
JW77, do you have any more information about the NxStage trials in London?
Bien,
No more info at the moment, unfortunatly the unit won’t just let me turn up to have a look round. I need authorisation from a doctor. I’m keeping my options open.
I do have another tactic I could use tho 
Another thought I’ve had is to go & check out home haemo on the continent, we’re very behind here in the UK by comparison.
most clinics will not let you in without a Dr’s support. I have tried to go look at possible clinics to switch to and they freaked that I was asking to look at their clinic…
LSB
I guess you could call the nephrologist for permission to visit the dialysis clinic and say you’re thinking of transferring and would like to talk with the clinic personnel before having records transferred.
I can understand that patient privacy is paramount and you might need to visit when patients weren’t on dialysis, but if you’re a potential customer, why wouldn’t a clinic welcome someone to tour their clinic? After all, it might get more business for them and for their doctor.
I used to encourage family members living some distance from the patient to check out clinics in their area for a visiting patient. I never heard from anyone that this was a problem, but then again, I don’t know if family did visit.
Oh man, it is true…the transition from my private dialysis clinic to the clinic that had home dialysis training was a slippery road! All the shots were called by me and not my Dr…it was me that wanted homedialysis and there was some friction through the process. I think its your right and your entitled to choose but also I think some clinics want to protect themselves so they just tell prospective patients to talk to their Dr first…the question is, should it be like that? Maybe I was lucky on my part as I knew some of the people working for WellBound Modesto, previous patient for Satellite Dialysis may have helped get through, but really I don’t know.
I don’t think talking to the doctor is enough, if the doctor you happen to have is not supportive of home therapies. Some doctors believe that patients:
– Are not capable of learning to do home dialysis (even though most drive cars!)
– Are not to be trusted to correctly carry out their treatments at home
– Are likely to sue if something goes wrong (vastly more likely incenter
Many nephrologists were never exposed to home treatments during their training, even PD, and don’t even really know that these options exist. So, depending on a doctor may or may not get you where you want to go.
This is part of the reason why we built the Find a Center database (http://www.homedialysis.org/v1/centers/search.php. So, if your doctor says no, you can find another doctor and another center. Choice of a treatment is too important to your lifestyle to leave it to the druthers of a doctor who is not supportive.
Dori,
All I can say is I hope your list including “some doctors” doesn’t include you.
Having had 30 years of renal failure, I’m sure some doctors don’t trust their patients, but then we don’t always trust doctors.
Shall I add some pretty letters after my name :)?
JW
GCSC
A- Level+ English
A Level + Photography
HND Hort
Chair NKF-YPG
Of course I could add 29 years renal experience, on the shop floor!
Ya gotta smile,
I agree it may just me the unit I’m at at the moment, & this is a learning process for both me & my doctor.
There is a word, teamwork, & indeed we must educate our doctors, as well as our fellow patients.
I’m not a doctor, JW. And I probably didn’t make too many new MD friends with my last post…
So it goes. We’re here to ensure that dialyzors have the full range of options that will allow them to live as fully as possible, not to make doctors happy.
I CONFIRMED these rumors with a NxStage employee and they are FALSE, there is no NxStages on trial anywhere outside of the USA.
- Epoman
Epoman,
I was only quoting what I have been told by a person who works as part of the medical team at the said unit.
I have no 100% reason to disblieve, or belive that person or you. Presumably most companies don’t tell all their employees everything.
especially with something as sensitive as the NXstage technology.
I’d say you don’t have to shout, but then I was rather excited in my original post
maybe you could post a copy of some written confirmation document?
JW
If its true that there’s NxStage trials in London somewhere and merely someone leaked this information, something that is too sensitve for other competitors to know this! In the best interest of NxStage they’d rather not let the public know about these secret things, but who knows…its most likely it may be happening, NxStage’s interest to expand markets is a win win for them…
Wow, you can actually HEAR my WRITTEN words as shouting because I use caps and bold. :roll:
Anyway, I did not talk to just an “employee” I talked to a “higher up.” Nxstage just doesn’t have the infrastructure in place yet. It’s not easy to go “global” They don’t even support people in Alaska or Hawaii yet. There is no big secret, but from my reliable source there is no secret trial going on in London or anywhere else outside the U.S.A. for that matter. What would be the big secret? What competitors? Aksys? I think not. Their next “big thing” won’t be until 2008/09 Unless I am missing something what other "Portable Hemo-dialysis machines are there?
And No reason to get defensive “JW77” I wasn’t calling you a liar. You have your source and I have my sources eventually we will find out who has more reliable sources.
i’m really sorry to barge in with no knowledge of Home dialysis, but what do you people mean ‘NxStage trials in London’? haven’t they tested it on humans yet? i’ve been told people are using it :roll: i don’t remember exactly what company was it cause i called almost all companies in US, when i called’em they said their agent(?) will contact me(thou i told them i live in london) and they never called me unfortunately. I was looking for a home HD machine to buy for my father. When i called NxStage they said they don’t do it outside USA, when patients can’t treat themselves buying that machine then what’s the point in developing it.
probably some of you could help me out. i’ve been on this for over six months and never thought of joining an online forum, luckily i ended up here.
Hi Murali, and welcome to Home Dialysis Central. We’re glad you found us, too. As far as buying a machine for your dad, we have links to companies that sell machines overseas–often reconditioned and at lower cost than new. You can see them at: http://www.homedialysis.org/v1/links/#1. I suspect that in time (and hopefully not too much time), some of the U.S. makers of newer machines will expand their markets.
For our Home Dialysis Central visitors in the U.S., please know that you do not have to buy a home dialysis machine–it is the job of the center to train you and provide the machine and supplies.