What would your reaction be to being told...

[Sugarlump]

What would your reaction be to being told (on arrival at today's dialysis) that in future you will be weighed by a member of staff as they cannot trust us to put an accurate weight down on our forms

Mine was to say, Hang on a minute, I am NOT six and am perfectly capable of weighing myself and writing down the weight and if other patients choose to write fictitious amounts down, that's their problem. And at the end of the day we are adults and should be treated as much. I like to believe i am in control of my dialysis and not the staff... For the past 8 years I have weighed myself, written it down on the dialysis flowsheet and calculated how much I wish to take off. I believe I know my own body best.

But they weren't having any of it and an argument ensued for about 20 minutes, where the staff nurse was refusing to dialyse me if I didn't agree and got really heavy
I don't think this attitude helps at all. Dialysis (as you all know) is a pain at the best of times but being treated like this... I wanted to walk out.

This is one of the reasons I so want home dialysis... to escape this pettiness and monitoring. And being left kicking my heels in the corridor for an hour because the machine's not ready. And not being given any privacy when they change my femoral groin line dressings...

    

[Riki]

having a staff member weigh us is policy.  I think it's stupid.  A lot of things changed when we moved from the nursing home into the hospital.  We now have to wear those stupid paper outpatient bracelets when we go in, too.  I'm not sure why.  It's not like we're going to wander off during treatment.

They said that having a staff member weigh us had something to do with sanitizing the scale, but I've only seen the scale being cleaned once since that rule was made, and I stand on it in my bare feet.  Perhaps I should start making them clean the scale before I get on it.  I should start giving them as hard a time as they give me.

[okarol]

I would be unhappy and I would complain to the head of the clinic. These companies are providing a service to you and they should try to be accommodating. Of course if you have no where else to go then you probably won't get a choice, because you're stuck. I am sure I was at the top of the "Bitch List" at Jenna's center, but every time they gave us crap I would call and make an appointment with the nephrologist who owned the center. They probably only were willing to appease me because we had Blue Shield AND Medicare and they were making a ton of money off of Jenna for the first 3 years of dialysis.

[ChrisEtc]

You should have walked out or asked for a complaint form and sat in your dialysis chair filling it out for a half hour and then walked out.  I'd also ask to see the written policy and inform them that you don't appreciate having your honesty and integrity questioned.  There's a right way and a wrong way to inform customers of policies and telling your patient you can't trust them is definitely the wrong way.  Don't forget, you're a customer and you have every right to be treated with courtesy and respect just as if you were at the counter at McDonalds.  Actually, I get better service at fast food places than i usually get at Davita.  Sad but true.

[noahvale]

*

[Sugarlump]

Choice in England is non existent. They dictate where you go geographically.
Although I live equi distance to The Main Dialysis Unit and the smaller satellite unit I have to go to the smaller unit (5 chairs).
I would much prefer (after home haemo) to dialyse in The Main Unit.

There are only 2 members of staff on (of a rota of about 6) at my unit and it's extremely "cosy" and lacking in privacy/comfort. We also get no choice about times or days
of treatment.

I often feel they have the attitude I should be "grateful" to receive dialysis, and just shut up and do as I am told. But I think I should be treated with dignity and respect,
as an adult and my choices respected.

[pdpatty]

Gee,some people must have lied about their `wet' weight at the center where I go because the staff must verify our weigh in and out.

Now IF that is your only complaint about your center,count yourself blessed.

[Sugarlump]

Apparently one person was found (this is what started it all off yesterday) to be 11kg over...
I just feel that for 8 years i have weighed myself and written it down myself and calculated my fluid removal amount ... and that because one person has been
fooling themselves, I shouldn't have to be treated as if I were 6.
The worst problem is definitely machine not being ready on time and having to wait an hour to get on.
Lack of choice as to where I dialyse and when too.
The fact they are refusing me home haemo because I have a femoral groin line, despite the fact we trained up for it already. They decided the risk of bleeding from this kind of line is too great.

I find the lack of privacy in our unit a big problem too. In the main unit, they have curtains you can pull round for dressing changes etc whereas in my current unit they only have a small wooden screen, which is very ineffective and not kept in the unit so staff find it a headache to go and fetch and I feel unhappy at the way they change my dressing regardess of my feelings. Sometimes I am the only female in 5.
Difficult to make a complaint when there are only 6 regular staff and they have very subtle ways of repaying hostilities.
Difficult to walk away from dialysis especially on a Friday afternoon.

[geoffcamp]

They did that at my center about 6 months ago. But I'm still allowed to weigh myself and calculate what will be taken off. I wouldn't worry, it's probably not meant for you...  Just do as you have always done!  G.

[RenalSurvivorDotCA]

11 kilos over?? Wow. How does one gain 24.2lbs between treatments? Must have been a hell of a weekend! LOL

Our unit also has a staff member record our weight. And we have to have ID cards on lanyards around our necks. As if someone is going to sneak in to get free dialysis .    The ID thing is for some kind of accreditation(sp?)

[Sugarlump]

Sneaking in for free dialysis now there's a thought!!!!     
Perhaps I should try...

[Chris]

Next time ask for their weight. If they know yours, you should know theirs. All of them and bet they would balk at that idea. I never had to have someone weigh me at the clinic, we got on the scale, washed out own sites, and then they asked what our weight was when we sat in our chairs.

[jeannea]

At my clinic they watched while you weighed yourself then did your temperature while you stood next to the scale. It didn't bother me because they did it that way from the start.

The privacy for dressing change would be a bigger issue. That's the one I would fight about. Maybe bring a sheet and throw it over the whole area including the tech's head until someone is willing to put privacy screens in place.

[cassandra]

Sugarlump it sounds to me that its time for your campaign to get Nxstage. It took me nearly a year to get it, wrote to every nephrologist, rang every hospital I could physically get to, and I got it.

Don't give up on that.

It was the same in my clinic(s) in North England, having to be grateful not to have been infiltrated or something

Good luck honey, love Cas

[Subeat]

When I was on dialysis, the nurse always weighed me on my way in.  Did temp, listened to heart/lungs, and asked if I'd had any problems at the same time.  On the way out I would frequently just print it out and hand it over.

Now post transplant, a nurse weighs me each visit as well.  In fact, I've never had a dr visit anywhere that a nurse didn't check my weight.  Guess it's all what you get used to.  I agree that the wording re: trust is offensive though.

[Sugarlump]

Sugarlump it sounds to me that its time for your campaign to get Nxstage. It took me nearly a year to get it, wrote to every nephrologist, rang every hospital I could physically get to, and I got it.

Don't give up on that.

It was the same in my clinic(s) in North England, having to be grateful not to have been infiltrated or something

Good luck honey, love Cas

Is Nxstage available in England??? Where can I find more out about iit?
I am intrigued. 

[Sugarlump]

Monday when I went in for dialysis they asked to weigh me. I said no (I already have) and I still got my dialysis.
Tuesday I get a phone call to say I am being moved to the Main Dialysis Unit (as I am too complicated for a small satellite unit to manage!!!)
Made me smile since I wanted this in the first place but wasn't allowed!

[CebuShan]

Monday when I went in for dialysis they asked to weigh me. I said no (I already have) and I still got my dialysis.
Tuesday I get a phone call to say I am being moved to the Main Dialysis Unit (as I am too complicated for a small satellite unit to manage!!!)
Made me smile since I wanted this in the first place but wasn't allowed!

         

When I was in clinic, we always weighed ourselves and told them what it was. If they wanted to take more off than I was comfortable with, I could say no and they listened to me. Yes, I was very fortunate!

[cassandra]

I hope you are in a good, and more private, and respectful place now. If you still want info on Nxstage in our green, and pleasant land, you'll get it

    Lots of love, Cas

[Sugarlump]

I hope you are in a good, and more private, and respectful place now. If you still want info on Nxstage in our green, and pleasant land, you'll get it

    Lots of love, Cas

Yes please Cas
I need to know where to start researching and where i can find out more.
I really didn't think anyone had it in England...
Long term (if no third transplant forthcoming) then home dialysis is probably the only option for me to stay in control of my life, which is important to me.
I need to exercise my choices rather than jump through hoops for them

 

[cdwbrooklyn]

When I was in-center three years ago (wow how time flyers), I use to weight myself then wash my access, then sit in the chair I was assigned.  When the tech was ready to put me on, he or she would ask me what’s my weight and record it on the sheet.  Some days the tech will come over and look at the scale while I was on it (a woman of course) then record it on the sheet.  I never thought anything of it.  I just thought she was trying to safe time.  Anyhoo, it is hard to believe that someone came to dialysis with 24.4lbs overweight.  It may be that the scale was broken at the time that person weight him or herself.  Anyhoo, you should not be focused to do anything you don’t want to do.  So if you refuse something that really doesn’t interfere with your treatment, all the staff can do is write patient refused.   If you feel you are being pressure to do something you do not fell comfort doing, you can call the Kidney Foundation and talk to someone regarding your issue. 

Cheers
CDW - 

 

[cassandra]

Dear SL, to get Nxstage I emailed Kimal (the distributor of Nxstage in England) to ask which hospitals in my area used Nxstage machines.
You should get a reply with names of the clinics/hospitals who do.
Than you ring the dialysis units there, and go from there.

Don't give up after their initial refusal, nor medical, social, financial reasons as in some Nhs Trusts, contracts with current suppliers are 'in force'. Like with Fresenius in my trust.

Just Google Kimal UK, and after their reply, your trust, and if poss the nearest hospital with Nxstage

If you know a (dialysis)nephrologist who you like, and can get on with, than maybe he/she can help you actually getting it. That is after you have the info from Kimal.

Good luck honey, let me know how you get on, or if I can help.

Lots of love, Cas

[Poppylicious]

Sugar, you may bump into stoday now (although it's been so long since he was online that I suspect the worst) at the main dialysis unit (assuming it's where I think it is of course!)

My favourite nephrologist is in a picture on Fb this week *drools* ... you need to contact him (Dr. T) and get him on side about NxStage; they really should be offering it in East Anglia by now. 

Blokey sometimes lied about his weight when he went to haemoD ... he was a naughty boy!

[Mr Pink]

At my centre, the nurses way us as part of procedure, no exceptions. It doesn't bother me.

[Sugarlump]

Sugar, you may bump into stoday now (although it's been so long since he was online that I suspect the worst) at the main dialysis unit (assuming it's where I think it is of course!)

My favourite nephrologist is in a picture on Fb this week *drools* ... you need to contact him (Dr. T) and get him on side about NxStage; they really should be offering it in East Anglia by now. 

Blokey sometimes lied about his weight when he went to haemoD ... he was a naughty boy!

Do you know Stoday's christian name? We are having a local  kidney fed meet and greet with hog roast and stuff in a few weeks time. I will have to look out for him 
Ahhh Dr T ... how I miss my weekly visits and a doctor that treated me as an equal in conversation. Few and far between.
I had a terrible dialysis session on Friday. Machine kept alaming. Stopped my treatment for a half an hour dwell wiith TPA and my blood clotted and I lost the line. I had to reduce fluid I
was taking off to so came off over.
Five hours of sheer aggro and fidgeting and wanting them to make the right decision and not faff about. Left home at 12 noon and got back at 7.30pm with less than 4 hours total dialysis
in that time and only 59 litres of blood filtered.
But my last potassium check was good (4.5) 

Not looking forward to a repeat performance on Monday.