Am I overreacting?

[Adam_W]

As some of you already know from some of my previous posts, I have taken quite an interest in how my machine and treatment works, and a desire to do it all myself. I have been given the ability to do a few things myself, such as handling some of my alarms, but I can only do maybe 10 % of my treatment myself. I know how to do a lot more than that, but I'm not allowed by the centre. Usually it doesn't really bother me, and I'm content with what I am allowed to do. However, today, I just got very frustrated with sitting there knowing full well how to do something, and not being able to do it because of centre policy. What didn't help matters much was my tech hurting my feelings when I tried to politely correct her when she made a mistake with the machine (she thought the UF time was the remaining time for the whole treatment, and I lost a little bit of treatment time because she took me off when the UF time ended). I tried to point out the difference between the UF time and the RTD (2008H language for the remaining treatment time), and she basically said that I didn't know squat, and that she was right. She wasn't totally rude, but she was WAY too insistent, so I just shut up, sat there, and let her take me off early. I didn't want to raise a fuss with her because she is still my friend and I'm not the kind of person to want to make a scene. So, basically, am I overreacting with my frustration, and should I just be grateful I even have the centre to go to, or is my frustration at not being able to help very much justified? Take care.

Adam

[kitkatz]

Making a scene will not end the friendship with that tech.  Good God! It is YOUR treatment time she limited and it is your health she is hurting.  Are you going to do something about it? Damn right you are! Next time get the supervisor over there and explain things to them. Have them explain it to the tech. No niceness is needed when they are in the wrong.

[MJB]

Hey Adam,

I know how you feel. Why don't you give NxStage a try? I can guarantee it's all on you then. The only help you will get is if you ask. I do feel much more in control of my treatments.

Good Luck.

[Sluff]

Go to www.ilovenxstage.com

Epoman swore by the freedom of using the Nxstage system. He loved it.

[Adam_W]

I'm already on the waiting list for the NxStage program, but the waiting list to start training is an agonizing four to six months. With the issues I'm dealing with right now in the centre, it feels like it might as well be four to six years. 

[George Jung]

You should defiantly say something.  I think you did the right thing though by letting it go the first time and showing respect.  If I were that employee it would probably be hard for me to take criticism or be corrected by anyone who is not on the job.  Maybe approach her before/after your shift?

[jbeany]

Can you get a print out from the 2008H manual?  One that defines the terms/symbols.  If you can show it to her in black and white, you won't have to argue about it.

And no, you are not overreacting!  This is your health, not hers.

[Wattle]

Can you get a print out from the 2008H manual?  One that defines the terms/symbols.  If you can show it to her in black and white, you won't have to argue about it.

And no, you are not overreacting!  This is your health, not hers.

I agree with Jbeany. Get a print out and ask the unit supervisor to clarify the issue. Just say you were confused with the difference between the UF time and the RTD. You don't have to argue about it, just politely find out the right answer in front of the tech who told you "you know squat".   

[AlasdairUK]

I'm lucky as my unit encourages me to do as much as I want, I set up the machine and if it alarms during a session and I know what to do I'll fix it. This helps the staff as they do not need to always have to run over to the machine and when it does alarm.

Always question a member of staff if you disagree with them, even if you are wrong. It should be the nursing staff who are professionals who should explain things to you. They should be pointing things out and explaining in full.

[Meinuk]

Can you get a print out from the 2008H manual?  One that defines the terms/symbols.

This might help.


http://fmcna.com/productsdoc.html

[leafsunbear]

Are you using a catheter?  How are your treatments going IN-center?  Are you using the largest filter?  What is your albumin and other blood levels?  If you can prove that your life is dependant on the NxStage machine, they may bump you up on the list.  This happened to me,  but I was barely holding on with IN-center treatments.  NxStage hasn't solved everything,  but it has been very helpfiull.
LSB

[Zach]

Just remember, you can't be everyone's friend.

But if they are truly your friend, then they should understand that every minute counts.     

[angela515]

Everyone has offered such great advice I dont really have anything new to add... I do not think you were in the wrong, it's your health and shortening your dialysis time isn't going to help it.

[nextnoel]

No, you're absolutely not overreacting - what could be more important than looking out for your own health & treatment? 

[Adam_W]

Are you using a catheter?  How are your treatments going IN-center?  Are you using the largest filter?  What is your albumin and other blood levels?  If you can prove that your life is dependant on the NxStage machine, they may bump you up on the list.  This happened to me,  but I was barely holding on with IN-center treatments.  NxStage hasn't solved everything,  but it has been very helpfiull.
LSB

I do have a catheter, and I'm running the full four hours on a high-flux dialyzer. I've usually only been able to run about 350 ml/min. pump speed because of the catheter. I'll be getting my lab results back tomorrow, so I'll see how my blood levels are. Because I can only run three days/week, my physical (and emotional) condition feels like it's on one big roller coaster ride every week. I don't know if I could get bumped ahead in the NxStage waiting list or not, but I'll see what they might say. It sure would help.

[jedimaster]

You have the right to learn and to take care of yourself. I agree that you should talk to your friend and if he makes a scene, then move up to the supervisor. Nobody will take care of you better than...YOU!

[Adam_W]

Can you get a print out from the 2008H manual?  One that defines the terms/symbols.  If you can show it to her in black and white, you won't have to argue about it.

I actually have a complete operator's manual for the 2008H, and I had it with me. I just wish I had it out of my bag when she said what she did. Somewhat related to that, a few days before this incident, I had a new tech in charge of me, and she was still not knowledgeable about every part of the machine. She was trying, and failing to access my average blood flow and average dialysate flow to put on my run record. After several attempts, she actually asked ME to look it up in the manual, because I happened to have my copy of the manual out at the time. Me and this particular tech are very close friends and we joke around a lot, so I like to jokingly tell her that I will never let her live down the fact that she had to ask the PATIENT how to run the machine .

[luckaholic]

If you think someone is doing something wrong with your machine/treatment, you absolutely should speak up! If they wont listen, ask for the one in charge. It is so much better doing it yourself, you dont have to worry about having 10 different people fiddling with your machine.
I have had a big stuff up by one of the nurses when I had to go incentre, she dialed in my UF wrong, and at the time I didnt know how to operate those machines. I went in 6 litres overloaded and came home with the same amount on. I ended up going into emergency the next morning as I couldnt breathe. I made sure I rang the unit that night to tell them what went wrong (didnt realise until i got home). Apparently that nurse felt extremely bad about it. I now know how to operate those machines and when I go in centre I do it all myself. Unless I am unwell I dont, but I still check that everything has been set up right.

[kitkatz]

Words to live by in a dialysis center:
   Always check it yourself every time!