UK Patients Only

[Sugarlump]

I am trying to put together a list of hospitals in the UK that
(a) Offer Home Dialysis and
(b) Offer Nx stage machines for home use

Posted in this thread so more people read it. Thank you. 

[cassandra]

Aintree Hospital liverpool, and Royal liverpool offer home, and Nxstage

[kristina]

Hello Sugarlump,
To my knowledge Guys and St. Thomas Hospital in London offer training for Home Dialysis ...
... Before I started with dialysis, I had a "look-around" at dialysis-units in London and I was very impressed,
when I came across a centre, where Baxter-nurses trained dialysis-patients for home-dialysis...
I don't know if that information helps you, but I do hope you find soon a very helpful unit to train you well...
"My" unit is "only" an acute dialysis-unit and they also prepare patients for transplants...
Good luck and best wishes from Kristina.

[flipperfun]

Hello Sugarlump,
Hammersmith Hospital  in London, and I assume, the various satellite units attached to this hospital do offer home dialysis.  Sorry I do not know anything about NX stage machines.  Hope this helps.

Flipperfun.

[Woody72]

Hi - Derby Royal does home Hemo.

[JW77]

Shrewsbury, offers Fresenius and NXstage for those lacking space, etc..

[Simon Dog]

I am trying to put together a list of hospitals in the UK that
(a) Offer Home Dialysis and
(b) Offer Nx stage machines for home use

Posted in this thread so more people read it. Thank you. 

Have you thought of contacting NxStage?  They might have an idea.

[Sugarlump]

I tried but that weren't very helpful!
The UK website isn't up and running as yet. 

[Simon Dog]

I tried but that weren't very helpful!
The UK website isn't up and running as yet. 

I'd suggest you send the CEO in the US a letter, by Fedex to get attention, telling him of the need for this information that you want to get out to patients on the internet.    I'd be surprised if you don't get a response.

[JW77]

It is something the NKF SHOULD know

[Sugarlump]

Cambridge (Addenbrookes) Hospital have said they won't be having NX stage for home haemodialysis as "it doesn't provide adequate clearance of the blood"!!!!!
First time I have heard that!

[Simon Dog]

Cambridge (Addenbrookes) Hospital have said they won't be having NX stage for home haemodialysis as "it doesn't provide adequate clearance of the blood"!!!!!
First time I have heard that!

They are hung up on the URR for a single treatment, rather than total dialysis over a week's time.

When I was in the hospital (non-renal issue) for 6 days recently, the neph who ordered by treatments told me she thought NxStage was the best dialysis option available.

[Sugarlump]

Me too, slow and gentle and PORTABLE!!!!

[PrimeTimer]

I am trying to put together a list of hospitals in the UK that
(a) Offer Home Dialysis and
(b) Offer Nx stage machines for home use

Posted in this thread so more people read it. Thank you. 

Sugarlump, I think what you are doing is a wonderful idea! We're not in the UK but we use NxStage for my husband's HHD and it's gone very well. Since there are people everywhere with kidney disease I am sure more people would like to know about it and be given the option to use it. Good luck in forming your list! Maybe Simon Dog has the right idea...sending a letter to the CEO of NxStage just might bring positive results.     

[Sugarlump]

I can but try!!!!
I wrote to the Prime minister of New Zealand to ask him why I can't find holiday dialysis over there...as yet no reply! 

[JW77]

Just one thing I need to clarify.

The NXstage is NOT PORTABLE. Its weight is 35kg (over half my bodyweight) or close to a bag of compost.


I've never ever seen anyone with an NXstage travel case on the London Underground, a bus, or even National Rail (and I'd spot one if I saw one). If they do, I take my hat off to them, and possibly my pants as well!
If someone designs a truly portable machine, then I'd say its so.

Semi portable, or portable in a car maybe, if you can afford one.  It IS however, more portable than a regular heamodialysis machine.


As for clearance, overall, you will need to do daily, or nocturnal dialysis on an NXstage to get the best results.

[PrimeTimer]

I can but try!!!!
I wrote to the Prime minister of New Zealand to ask him why I can't find holiday dialysis over there...as yet no reply! 

Well then, you're a real go-getter you are! Good for you! Your friends in the UK must appreciate your advocacy. Maybe at some point NxStage will respond when they hear of how helpful your list can be to folks. Tell them you've already done the leg work, the least they can do is include it on their site. Maybe a travel site somewhere for dialysis patients will post it or newsletters. Keep up the good work! I love seeing the stubborn ones in action! You seem to know what you're doing, kudos! 

[cassandra]

Sugar, when I last spoke to Nxstage UK they told me they were not allowed to provide info like that, and it could be seen as advertising (if they would do that) so its down to us patients 

I tried but that weren't very helpful!
The UK website isn't up and running as yet. 

I'd suggest you send the CEO in the US a letter, by Fedex to get attention, telling him of the need for this information that you want to get out to patients on the internet.    I'd be surprised if you don't get a response.

[kristina]

I can but try!!!!
I wrote to the Prime minister of New Zealand to ask him why I can't find holiday dialysis over there...as yet no reply! 

Sugar you are certainly an inspiration !
Thank you for trying so hard and please keep yourself well !
Take great care, best wishes from Kristina.

[Sugarlump]

Sugar, when I last spoke to Nxstage UK they told me they were not allowed to provide info like that, and it could be seen as advertising (if they would do that) so its down to us patients 

I tried but that weren't very helpful!
The UK website isn't up and running as yet. 

I'd suggest you send the CEO in the US a letter, by Fedex to get attention, telling him of the need for this information that you want to get out to patients on the internet.    I'd be surprised if you don't get a response.

You have traveled with you NX stage machine haven't you? I assume by car and by plane? Do you sit it on the backseat or boot and how easy is it to lug around?
Maybe the keyword is transportable rather than portable!!!

[cassandra]

Hubby puts it in the soft travelcase which I ordered with the Nxstage distributor with my monthly supplies (The hosp took too long for my liking duh)
 I as yet have not received the metal case which is supposed to be used on the plane so it can be checked in with the luggage, but when I traveled by plane I told the check-in people, flight staff, customs and police that it is an EU Law, and that it's a disgrace that a patient has to explane to them that a life support machine has to stay in the cabin. (Its not a law, but what's a girl to do). Than it sits on a chair with belt. I had a lot of hassle during one flight with the staff about the problems I would have if the plane is full, so I told them hubby would sue them, and they would be responsible.

If you go by plane I book in that I need support, so friendly people will put the heavy machine on the belt and put it through the xray machine.

Both suitcases have wheels so if the surface is quite smooth, even I can pull it (with cane)

The machine really is heavy, and the new UK one that's just developed is the same, but it IS transportable, and two people (even with me) can carry it.

In the car it goes in the boot (Golf)