What is question

[kitkatz]

What is the ONE thing you would like the dialysis staff to know about you?

I want them to know I am the person in charge of my treatments.
I am to be included in all changes.

I am going to use answers for a blog article.

[cassandra]

I want them (mainly drs) to know that I’m aware of being ‘seriously ill’ , I didn’t forget, I haven’t forgotten so STOP reminding me.


Also after 15 years not producing urine, STOP asking me if I brought my sample (clinic staff) it must be poss to write that on the first page of my file. I don’t expect any brainpower to be used to work out that 3 nephrectomies, and 1 transplant means no kidneys. They make me so tired


   

[Rerun]

Why after 11 years of 8 hours treatment three times a week DaVita can just terminate it with no place to go under 20 miles that only give six hours.  Economy is good and places are full.  I dialyzed in a dump for 11 years they are kicking us out and remodeling.  This is against medical advice.  I can get 4.5 hours so my quality of life is cut in half.  A few bigger men have bigger fluid gains.  How will they survive.   Is DaVita going broke?  NO.  Is 13 million a year for the CEO not enough.  I think he use to make 30 million so maybe that is not enough huge profit off sick people and Medicare?

[Paul]

I think you hit the nail on the head with "I want them to know I am the person in charge of my treatments".

I spent a lot of time arguing with them before they realised I had worked out how the machine works, so that there is no point in arguing, because as soon as their back is turned I'll reset it to the settings I feel appropriate.

Although they do warn me if they think I am about to do something dangerous.

[Rerun]

ASK me before you just change something!

Last night I woke up in a complete sweat and my BP was down to 65....   I asked the nurse to turn down my Blood temperature  down a notch.  She said... oh it was 36.3 but the paper says 36.6 so I changed it.
WTF  I said why didn't you ask me before you changed it.  She said I don't know.

We are not paper dolls laying there. 

[Riki]

ASK me before you just change something!

That was always a big thing for me, and not just the nurses, but the doctors as well.  I took an angry cry tantrum on one of the doctors after he discontinued a profile setting on the machine we were using at the time without writing why in the order.  I flipped on him when he told me that it was a "housekeeping issue" and had been taking away nursing time.  I think I scared him.  He never changed anything without asking me about it first, or at the very least, explaining his reasons.

Now, we have new machines (Fresinius 5008) and they have a UF control setting on them.  I love this, because the machine decides when it should pull more or back off.  All you have to tell it is it's limits, which is how much fluid it can leave or extra it can pull from the goal, and the critical line.  I was there when the lady from Fresinius was teaching how this works, so I have a good idea.  The thing is, the machine hasn't pulled enough yet to know what my true critical line is yet.  What they should be doing is, when the machine alarms, is check to see how I'm doing, then lower the critical if I'm still okay.  What they've been doing is turning the alarm off and taking me out of UF control and not saying anything to me at all.  If they'd said anything to me, I would have told them to put the critical down another percentage point.  Just taking me out of UF control, I'm not even getting my goal off.

I guess I'm going to have to be the "problem child" again, though I don't really want to

[iolaire]

.
Now, we have new machines (Fresinius 5008) and they have a UF control setting on them.  I love this, because the machine decides when it should pull more or back off.

Are you in the US?  Regardless that’s great for you, they had those in Ireland and it just completely makes sense - measure the water in the blood rather than trying to guess a dry weight via a scale.

[Alexysis]

I'd like to tell certain members of the staff (not just technicians, but also duty nurses) to remember that a dialysis clinic is a place of business, and not a social occasion. There is a guy on my team at a clinic which has 30 chairs, divided into 3 'teams'. I'm on team #1, on the right end of the building. When this guy comes in, he is VERY popular with the ladies, so much so that they come from all the other teams to visit, swap stories, laugh, and generally do anything BUT paying attention to their patients. Last week, he had no fewer than 6 techs gathered around him, when a patient on the far end of the building had a crisis, and they actually had to page some of the techs back to their team, resulting in several having to run all the way across the clinic!

[GA_DAWG]

They tried the crit line things on us for a while. They were really good at having people up and down the line screaming from cramps. After just a little use, they discontinued them, and they hung there like an old Pong game until we got new machines. The thing I most want them to understand is I am fully capable of understanding the whys and the whats of my treatments. When I first began dialysis, I made a remark to one of our techs that I was still trying to figure out how all this worked. She told me to ask her any questions I had and she would do her best to answer them. To this day, she is my favorite tech, and every time I go in the door, I look to see which section she is in, because if I get in trouble, I call for her, and still go to her with any questions.

[Riki]

Are you in the US?  Regardless that’s great for you, they had those in Ireland and it just completely makes sense - measure the water in the blood rather than trying to guess a dry weight via a scale.

They tried the crit line things on us for a while. They were really good at having people up and down the line screaming from cramps. After just a little use, they discontinued them, and they hung there like an old Pong game until we got new machines.

I'm in Canada.  This isn't something that's connected to the machine, it's built in.  They don't use it on everybody, just people like me who they think it will work well on.  The lady from Fresinius told me that this particular machine isn't available in the US yet.

I do like it because I thought I had a lot of excess fluid.  it doesn't show up in my hands or feet like normal people.  It seems to sit in the area in my abdomen where my gallbladder used to be.  I can even feel it moving back and forth sometimes when I'm in my rocking chair.  The nurses were going by my weight on the scale, but the machine pulled it all off, enough that my dry weight could be dropped a bit.  Now that the fluid is gone, my bp has gone back down to mid 90s, which tells me that my current dry weight is where it should be, but we got a bunch of new nurses who I need to train. *sigh*  I discovered that my crit line wasn't set properly.  It was at 91% when it was supposed to be at 83%.  I told her that if she put the percentage down where it should be, the alarm would stop going off.  She said, "but your bp is 95/60."  I said, "so?"  Finally one of the older nurses came over and pointed out that even though my bp was low, I was asymptomatic, and my mean arterial pressure was where it was supposed to be.  I'm not sure what they did, but they pressed a bunch of buttons and the alarms stopped going off.  The new nurses react without talking to me, and that's a big pet peeve of mine.  The older ones know better, but like I said, these new ones need training

[Charlie B53]

I think I am fortunate in that at my clinic I set in the chair closest to the Nreses station and as all the Tech's are maxed out on patients I am always cared for by the Nurses.

There are two of them and they alternate weeks.  Both ask me what I want to take off as some Mondays I come in a little over my average.  I don't eat the bacon any longer.

They often use the crit line thing as I am 'easy'.  The machine can take off more than it is set for.  We have been raising my dry weight and Fri and today my standing BP was over 100.

I didn't have to stay after school!