Hello folks, still here:)

Discussions for Patients, Family, and Friends HD For Patients
1

Hi folks, I’m sure Gus & a few others remember me, but long time no post:)

As I mentioned in another post I recently went on Holiday to Menorca, a 40km wide Spanish island. I’ll try & get some pictures up.

I digress. I’m still aiming for home haemo & the training is going well, albeit very slowly. Well I am in the UK under the care of the NHS & a hospital trust with no home haemo program. The main element of my assessment at the moment is the emergency procedure for when I feel low. Once they’re happy with that, they’ll start the plumbing & electrical installation.

I’ll be getting a Gambro AK 90 or 95…

I’d love the NX stage to come to the UK & Europe but it looks like that’s going to take a long time! I’d love to get my hands on one of those beasts! :slight_smile:

Thats all for now,

J

2

[quote=JW77;13906]Hi folks, I’m sure Gus & a few others remember me, but long time no post:)

As I mentioned in another post I recently went on Holiday to Menorca, a 40km wide Spanish island. I’ll try & get some pictures up.

I digress. I’m still aiming for home haemo & the training is going well, albeit very slowly. Well I am in the UK under the care of the NHS & a hospital trust with no home haemo program. The main element of my assessment at the moment is the emergency procedure for when I feel low. Once they’re happy with that, they’ll start the plumbing & electrical installation.

I’ll be getting a Gambro AK 90 or 95…

I’d love the NX stage to come to the UK & Europe but it looks like that’s going to take a long time! I’d love to get my hands on one of those beasts! :slight_smile:

Thats all for now,

J[/quote]

Welcome back! Good to see you again…please do so, show us pics of your vacation! Ya, I know how you feel and many other people feel the same way. I think it will take time till Nxstage can expand to other markets. Anyway, am still glad your opting to go home and do dialysis.

Cheers!

3

Hi JW
Nice to hear from you again. Great that you are getting through that training. Those emergency procedures didn’t really do much to lodge in my brain until I was faced with the reality of them on my lonesome at home. Then I had to learn real fast and had lots of stuff ups!!

Love to see some pics and do post again soon. We have to balance up all these Nxstage converts that have taken over (;

I can’t see Nxstage coming to Australia either in a hurry, would love to know whether Fresenius or Gambro have plans to design their own small machine though…

Cheers

4

Hi JW and welcome back. I’d love to see vacation photos from Spain. So, you dialyzed while you were there, right? How was that?

Beachie, I’d also like to know if Fresenius or Gambro is planning a small machine. Haven’t heard anything about that yet, but we keep our ears to the ground. :smiley:

5

You can see a few photos of me & the staff at the unit
Here http://www.flickr.com/photos/cybercast/ click on Menorca 07

It’s a small, 6 station private unit using B- Braun machines & dialysers, needles & lines which I didn’t recognise, although they are the same size. I’ll try & get some more actual holiday snaps uploaded. The ones in the ‘scrubs’ are the staff! :), and me & my friend Paul with them. Next to the unit is a nice courtyard are linked to the cafe where you can get a drink & something to eat for a few euros, A euro is 1 Euro = 1.3438 dollars according to google

The actual island itself is off the coast of Spain As you can see it is very small:) Compared to mainland Spain or even it’s neighboring island Majorca

http://www.menorca.world-guides.com/maps.html

Will try & get some more pics online soon:) & do a full write up;)

6

Thanks for the photos. :slight_smile: I’d heard of Mayorca, but not Menorca. Glad to hear you’re still making progress toward home treatment, too.

7

Well, I had a decent hour long clinic appointment with my consultant yesterday & things are looking good. He is going to poke the technicians & nurses into moving things forward. I guess the tech’s are just waiting for an OK from the nurses, & an OK for the money as well! Blah silly paperwork.

I just wish more of the staff were like my consultant. Unfortunatly he’s based at another unit, although there are a few staff at my unit I’d consider to be ‘on the ball’ & aware of whats going on.

I’ve got a lowish, Hb, 10.8 which explains my feeling foggy & lousy. My EPO dose has been upped to 10.000 iµ from 7,000 which should make a difference. He wants it between 11 & 13. It would also explain my loss of drive to do anything much except dialyse, sleep & watch TV.

I’m also going to be weaned off the immunsuppressants from my remaining inactive transplant. First the cyclosporin, then the prednisolone. All of this will be very gradually, over months, & one drug at a time. Just in case something happens.

If the kidney rejects, it might be painful, & it will have to come out. Trying NOT to think of that as it means an op, which will also be painful.

OR it may just sit there & do nothing.

So it’s the waiting game again for me!

I guess I’m sorta thinking aloud here, but just thought you might like to know!

For those of you not familiar with the machine I’ll be getting, just do a search in google images for Gambro AK95

8

[quote=JW77;13960]Well, I had a decent hour long clinic appointment with my consultant yesterday & things are looking good. He is going to poke the technicians & nurses into moving things forward. I guess the tech’s are just waiting for an OK from the nurses, & an OK for the money as well! Blah silly paperwork.

I just wish more of the staff were like my consultant. Unfortunatly he’s based at another unit, although there are a few staff at my unit I’d consider to be ‘on the ball’ & aware of whats going on.

I hope it all goes throught well, hang in there!

I’ve got a lowish, Hb, 10.8 which explains my feeling foggy & lousy. My EPO dose has been upped to 10.000 iµ from 7,000 which should make a difference. He wants it between 11 & 13. It would also explain my loss of drive to do anything much except dialyse, sleep & watch TV.

What about iron, is ferritin and transferrin okay?

I’m also going to be weaned off the immunsuppressants from my remaining inactive transplant. First the cyclosporin, then the prednisolone. All of this will be very gradually, over months, & one drug at a time. Just in case something happens.

Please explain, what can happen by withdrawing from immunsuppressants?

If the kidney rejects, it might be painful, & it will have to come out. Trying NOT to think of that as it means an op, which will also be painful.

OR it may just sit there & do nothing.

So it’s the waiting game again for me!

Most likely it may need to be removed, depending on how bad the symptoms are…most common problem of having a non-working cadaver inside you is high blood pressure. After three years I needed to get my cadaver out.

I guess I’m sorta thinking aloud here, but just thought you might like to know!

Thanks for the update, we care!

For those of you not familiar with the machine I’ll be getting, just do a search in google images for Gambro AK95[/quote]

I believe its this machine? Is it?

9

Hey, Gus, I’ve seen that machine at national kidney meetings, though it isn’t sold in the U.S. It looks cool, doesn’t it?

10

Hi Dori, yes, it looks quite interesting. The slim vertical design makes it seem to fit the home setting perfectly. The Big wheels at the bottom is a BIG plus. However, looks like it not as portable as the Nxstage System One…

Have you say any other interesting machines?

11

Nope, that was the one that stood out to me. For some reason, Gambro does not have any home dialysis machines in the U.S., even though they are a major supplier in Europe and other parts of the world. Maybe the FDA process here is too much to deal with?

12

Well, take a look at Allient Sorbent System didn’t they announce partnerships in Europe? Gambro was really founded in Sweden and has offices in USA, but knowing the truth reasons why dialysis organizations in USA choose Fresenius over Gambro can be a mystery for us, but most likely has to do with ecnomics…money matters.