Firstly, let me introduce myself,
I’m 29, from North London in the UK, & currently on in unit heamo, considering home haemo.
I’ve been a kidney patient all my life.
Diagnosed at the age of 5. 3 transplants, on PD, haemo, on and off, some liver & heart issues, but all is stable at the moment.
I am sure I will have lots of questions.
edit… I use almost always BBraun Machines, tho at the moment I am dialysing t a private unit which uses, Fresinius Fresenius 4008H… God they are ugly bastards of machines compared to the BBrauns… they look antique!
My first one I will put in a seperate post.
You sure have quite sometime dealing with kidney disease…I have to tell you that doing dialysis at home is just amazing! You’ll feel independent and of course freedom! You will love it!
Anyway, once again welcome, we will standby and answer any questions you may have…
I have heard reports that BBraun is a very balanced machine. Do you experience any difference in how you feel on the BBraun as compared to the FR4008H?
just an update, I’ve been dialysing on a FR4008H for a month… at a private unit. I had cramp for the first time in months on the Fresinius machine.
other factors tho may have been change in envoronment… dialysing on one of those horible mecanical chairs in a pit of flourescent lighting does me no good.
The unit is actuall a converted victorian warehouse!!! Converted into offices, housing & trading estate.
Compared to my usual unit it’s pathetic.
just an update, I’ve been dialysing on a FR4008H for a month… at a private unit. I had cramp for the first time in months on the Fresinius machine.
other factors tho may have been change in envoronment… dialysing on one of those horible mecanical chairs in a pit of flourescent lighting does me no good.
The unit is actuall a converted victorian warehouse!!! Converted into offices, housing & trading estate.
Compared to my usual unit it’s pathetic.[/quote]
Get us pictures! I wanna see a conveted victorian warehouse…
The good news is, I’ve got my doc to start the procedure for home heamo, not sure exactly what this involves but presumably a plan has to me granted for changing a part of the house into medical use, with suitable electricity & drainage.
I know a little bit about the process as my dad has done a plan for home heamo before, for a council flat. This due to the fact that he worked for a local council as an architect!
Strange thing was, the guy’s flat was all set up, & then he got a transplant shortly after!!
Typical eh!
Also will start the process of getting a laptop grant, & relevent software.
So I can sit on dialysis & post here,… Also considering live webcam, if I get round to it!!
J
Well, you said keep us posted so here we go.
I’ve now been at Fresenius Camden for about 15 weeks now, & they still keep messing me about. I will be getting a formal complaint put together in the next week, which I shall send to around 10+ relevent parties.
I’ve seen costcutting, but not using a new pack at take of, not having tape, not having the right size of dialyser & not getting saline delivered for the unit to run is just too much.
I’ve booked an appointment with my doctor & the renal counsellor. I know things are bad when I regret waking up.
In my world, Fresenius Stink!
I doubt I’d get onto home haemo before xmas, but then pigs might fly!
And I’m not the only one caugt up in this damn crisis!!
I’m sorry to hear that you’ve been having so many problems, JW. Dealing with kidney disease is hard enough without having to fight an inefficient bureacracy at the same time. It certainly sounds frustrating for you, and I applaud your willingness to keep trying.
That said, I’ve surely seen in the US (don’t know about the UK) that within the same company, some centers are vastly better than others. Usually the company knows how each center is doing, and makes an effort to bring the lower-functioning ones up to par, but this can take time. So, it may not be Fresenius per se, but your particular center that’s the problem. Is there another center from that company or another that could support you in getting home?
It is most likely it is the Fresenius unit & slack management. As I may have mentioned, the area manager we saw looked like she’d stepped out of a tomb & put on make up. I’ve never seen such an unhealthy person in the health profession in my life!
Luckily, Fresenius have nothing to do with my home haemo. It’s my NHS trust thats in charge of that & my consultant. I’m seeing him Tuesday post dx so hopefully can get the balll rolling a little further.
NX Stage is definitly going to going to be brought to topic in the question times when I attend the NKF (UK) conference next month. I’m representing the Young Persons Group, with other members (Someone has too)
As well as words with the Fresenius people as they usually have a stand
Had my doctors appointment today, straight after dx. Got to the unit & went straight in. To cut it short he had only recently been notified that my heart tests were fine (typical)
He’s agreed to send the tech round to your house to assess for the setup, plumbing/ electric etc! No time set on that but I said ASAP.!
All my figures are fine, despite doing 3 & half hours! which is good.
The best bit, I pointed out Home Dialysis Central to him & he went straight to look it up on the computer! I think he’s quite impressed.
Apparantly I’m his first ever home haemo patient (yes the UK VERY slack when it comes to dialysis) so it’s new to him AND me, seems like a partnership.
Oh wow, your the first home hemo patient in your area!! Please document your experience and if possible try getting some media to show the world!! Congrats!
Well, in my local area I guess, I know there are probably around 40 or so in London, or so I’ve been told. Not many given the population! It’s a fairly big city!
Will definitly Blog it once I know things are going forward for certain. I’ve actually been getting very depressed at being stuck in a rut! Ever the sceptic I’ll believe it when I can kick it & it squeals!
UPDATE, UPDATE, Read ALL ABOUT IT!
nope I haven’t got an NXStage & home dialyisis, , I haven’t even got home dialysis. But, after going to a recent seminar about localisation of healthcare! (ooooh what a good idea! :roll: ) I found out afterwards that 10 NXstage machines are being trialed at a London hospital!!
Unfortunatly, their not in my hospital (DAMNIT!).
But, I’m off to the NKF conference tomorrow & noise will be made!
Hope your all OK,
I’m also in the process of making a severe complaint to the crap care I & other patients, have had at the Fresenius Unit I’m at right now.
(Someone has too)
) I found out afterwards that 10 NXstage machines are being trialed at a London hospital!!