nxstage users in north-west enland

[cassandra]

Hi, I heard from Kimal that there are a few nxstage users in the Merseyside-area, and just want to know how they went about that, and where they trained, and how you experienced the whole experience. Thanks already Cas








Edited-MOVED: To general discussion area- kitkatz,Moderator

[cassandra]

OOO maybe I can use this thread as my diary. Today I spoke to the HH nurse in Aintree who told me they have one (1) person on Nxstage. He might call me back next week about Nxstage. I am truly excited

[willowtreewren]

I hope you hear from him! 

[lmunchkin]

It would be great if all country's offered all different modalities.  I hope you hear from him soon Cass!  It is a really good modality, but just knowing it is there for all would be even better.
Best of luck and hope you hear soon!  Its something to be excited about.

God Bless,
lmunchkin
 

[cassandra]

thank you all, I'll keep you informed.

love you all so much, its seriously weird

Cas

[cassandra]

Oh yes, today I rang the HH-nurse who informed me that the Nxstage-machines are not going to be 'rolled out' in the North West, only in 'special cases'. So I informed him that I am a special case so try again please, so he will talk to ....... But he will get the 'buttonhole' nurse to come, and see me to assess if I can have those in my very matured fistula, so that it will be easier to stick the needles in with my 'wrong' hand in my right arm. It might take a year or so to get on Nxstage, but if I keep on top of this (ringing the hospital etc) I will get it. I am pretty positive.

love Cas

[big777bill]

  Wishing you the best of luck in your quest to get on NxStage   

[cassandra]

thank you Bill

[big777bill]

My wife and I are on the same path as you. I can't wait to get started with the training. It's too bad they don't have this more readily available in the UK. You know thousands of people would be interested in getting started on it.

[cassandra]

I thought that too, but when I came very enthousiastically into the clinic, telling all fellow patients about this amazing machine I didn't get a single possitive reaction. Weird

[lmunchkin]

Hey Cas, turn them on to this site!  If they don't get enthusiastic about it after this, then they will never be excited about anything.  Really, turn them on to this site!

lmunchkin

[cassandra]

I have tried that too, with no avail, but than of course I didn't tell you that I live in a pretty conservative (in all ways) area. But I won't give up, I'll try again.

[cassandra]

Oh wow, today I went to the vasc.nurse who informed me about button-hole etc. With hubby, but he could not give me anymore info than I already knew. But I decided to at least start trying to stick my own needles in. And it worked!!! What o doodle. So now I am wondering if it is actually necessary to start button-holing anyway. Is it really that much easier, and or better for my fistula?

love Cas

[cattlekid]

I refused to go for fistula surgery until I was assured that I would be able to use buttonholes.  For me, buttonholes have allowed me to go home with NxStage, get rid of my catheter and still have an arm that looks halfway normal.  All I have is a small bump, some scars from my surgery and two small holes.   I saw people with ropes up and down their arms when I was in-center and flat-out refused to get a fistula.  I am relatively young and still somewhat vain about my appearance.   

Oh wow, today I went to the vasc.nurse who informed me about button-hole etc. With hubby, but he could not give me anymore info than I already knew. But I decided to at least start trying to stick my own needles in. And it worked!!! What o doodle. So now I am wondering if it is actually necessary to start button-holing anyway. Is it really that much easier, and or better for my fistula?

love Cas

[lmunchkin]

Yea, my husband has the big rope, and we love it.  We do not however do button holes, but I use ladder method.  Don't plan on changing if it works best for me. So no, you don't have to go with button holes, but I think it works better for the one who is d'ing to do themselves that way! But it is not a mandatory thing for NxStage, or at least in my area!

God Bless,
lmunchkin
 

[cassandra]

just back from D, and needled myself again okay. I found some places now to stick which might be good for buttonhole. Yes I've got the rope already, but just 2 holes in that rope sound kinda cute too. I think I'm gonna try that. Thanks Imunchkin and Cattlekid for the input.

[sandra3105]

hi i have dialysis in Manchester and the training unit is in the process of trialling new machines currently dialysise on Fresenius 4800 started training 1st week of jan ( spent 3 years on PD ) they new machines are by Baxter, i think braun was one, reading this site for the last couple of years i have heard NXstage - what type of machine is it ? i had not heard of one in Nwest but see that they merseyside have 1 patient. just heard that we have been accepted myself & daughter do not match but have a 3 x way swap in the process of being arranged for sometime in May, we have to have an interview this week with an independant assessor ( human tissue act ) and then all the tests in April to ensure the 3 couples are still fit and healthy. after nearly 3 months training on heamo i have it cracked and am using ladder technique with sharps  dont like it have blown a couple of times, not clamped the arterial line coming off wow  but the thing that worries me is the post transplant medication - i had a patient opp. me a few weeks that took himself of the transplant list coz the medication nearly killed him - it failed - this does not make me have apositive spin on it and nurses reiterate it is just another form of dialysis not a cure ! very mixed up feeling 

[cassandra]

Hi Sandra, I can only say that 30 yrs ago, when I had my transplant the meds are heavy, give complications etc. But having a kidney that works is pretty amazing. The chance of the TX failing is a lot smaller, than it succeeding. Of course its not a cure, but you can give me that kind of D any time, any place, just bring it on.

love Cas

[cassandra]

OOOoooo yes, I found one Nxstage (prospective) user in L'pool. The centre is The Royal. So I'll start writing the nephrologists there now. Positively happy I am

[cassandra]

Today I spoke to the HHD nurse in the Royal, its Dominique whom I remember from when I used to D there 10 or so yrs ago. He told me that he would contact my hospital that they use Nxstage with success, and that Nxstage for me using extended would be a good option. I have my 'get Nxstage now' appointment in an hour with my consultant, and got my aims in writing prepared. (had to take a Diazepam to get my mental state a bit relaxed)
Thanx again for all the input.

lots of love Cas

[cassandra]

Okay, appointment with Nephrologist went surprisingly well. After I started crying that I had to miss most of my dads funeral cause I couldn't have D in Holland, and that all that could have been so different if I would just have had a Nxstage machine, he actually rang the HomeD nurse to organise an appointment for me to be assessed for Nxstage. Sounds promising, I'll believe it, when I see it.

[lmunchkin]

Cass, you hang in there gal.  Fight for everything you want and don't give up till you get it!  I love that about you.

Have you been cannulating yourself still?  I wish my husband could do it.  He has tried, but he just cant see it. But since he is right handed and fistula is in the right arm, it really is awkward to do with your left hand.  Heck, I know I couldn't do it! I give him E for effort, he really does try to do things on his own.  He has been very instrumental in setting machine up and having things ready for when I get home.  All I have to do is snap-tap and get things ready to stick him.  Im very proud of him, cause he wants to help so bad.

lmunchkin

[cassandra]

Thanx Imunchkin, and I'm proud of the both of you. I do still needle myself, and I get higher on my fistula, and deeper than any tech has ever achieved. I have the righthanded, right armed fistula problem as well, and thank the Lord I have no problem seeing it. You sound like a lovely team.

lots of love Cas

[cassandra]

Yesterday I heard from the HHnurse that I am now Okay-ed for Nxstage, but I only if I do 6 days a week. So I will have to try, and create buttonholes. I've tried, and failed (okay I couldn't get the scab of, nobody in clinic to help me, so decided not to bother) But tomorrow I'll call the GP to arrange Emlea creme, cos it sounds like a good tip. And I'll ring the HHnurse for a date to start training.

   

         

[cassandra]

Well, so far so good, I think I'm on my way to creating the buttonholes. I manage to use two holes for 5 sessions now. I still find the scabremoval thing a big pain in the but. I have my phone alarm 2 hours before I probably stick my needles in (still sharps), and 'soak' with saline as soon as I come in clinic (after spraying some lidocaine spray on too, as I'm still using sharps) Than pick with some blunt needle kind of thing, than scrub the sites with exfoliating wipes. Oh and disinfecting 2 x in between. Maybe next week I'll be able to use blunts.

5 more people in the clinic started with BH! And the manager informed me yesterday that she's ordering 20 mm needles, after I explained that its a bit of a stupid idea to expect me to use 25 mm's blunts after using 20 mm's sharps.

I'll get there, I'm sure