We really need to be vigilant concerning our treatment

[Bajanne]

I have been feeling so fatigued after any kind of exertion however slight.  I had a conference with the dietician/nutritionist as we looked over my blood results  they were all mostly great and this was due to change in diet and some exercise.  But my haemoglobin was low.  she told me that if I feel any weakness, I should speak to the nurse.
It turns out that my haemoglobin had been quite high and the nephro cut down on one of the medications that I used to get (not sure which one).  Well, our nephro has left over 3 months, and it seems no one ever checked out the situation again.
When I went to  dialysis on Friday, I told the nurse who was putting me on about it.  she said she would check  my results.  I had my good sleep as usual.  When I got up, it was time for me to come off the machine.  I asked about it again.  she then had a trainee bring my files, and then proceeded to put something in my line that was almost finishing the wash/rinse back.
So if I had not asked again, I would have continued without what was necessary for me.

[2_DallasCowboys]

Bajanne,

You could not be more correct with the above post.
The best person watching your health--  is yourself!
No one could know your boday as well as you yourself
do!   Whenever anyone feels "different" after a
treatment it is always wise to ask if anything was
changed, or tell the charge nurse how you are
feeling

Anne

[Stacy Without An E]

I wholeheartedly agree with everyone about being diligent about your treatment.  Last night someone accidentally put me on a three hour run when I'm only supposed to be on two.  They discovered it about 100 minutes into the treatment.  Thus, I didn't get all the fluid off I wanted.  I understand they have so many patients to deal with on a daily basis, but it's right there on my chart.  I left heavy, but since I go six days a week this can be corrected tonight.

I believe the longer you're on Dialysis, sometimes complacency can set in.  This was a wake up call that I need to be more aware of my treatment no matter how awful I feel.

[donnia]

I totally agree!!!  We gotta watch our own backs.... cant tell you how many times I have had to ask things over and over.... they giggle and say I'm a worry wart.... do I care, no, just get me the crap I need 

[Lori1851]

Amen on your post!!!! While Dustin was in the hospital they said he takes o.3 of Clonidine doesnt he I said NO the script was 0.2( 3 times a day). I told her if that was the case the script was wrong because dialysis had his discharge copy from last time!!!!!!!!!! Stay on them you guys and gals. Sometimes I think the Dr's dont know if they are coming or going!

Lori/Indiana

[kitkatz]

Yes, you have to stomp your foot periodically and make these dialysis people wake up and take notice.

[JasonEb]

Not only am I diligent, I'm proactive.

I have them turn the machine toward me so I can check the settings, watch that the arterial pressure doesn't exceed -240, that my blood pressure is set for every 30 minutes, so on and so forth.

I also read over the treatment sheets during the treatment to make sure I'm getting proper meds (or even getting them at all), tell them how much weight I want to take off (instead of just going by the dry weight they put me down as over a year ago...even people on dialysis can gain or lose dry weight).

But I try to be nice and polite about it, even as I'm very firm.  I often describe myself to new workers as "The Nicest pain-in-the-ass in the place".

[RichardMEL]

Yes. I am also one that watches them set the machine and every so often catch an error. Like the other day they set it for 2.3 when it should have been 2.2. Not a biggie but sometimes they add up wrongly. Interestingly most of the staff know I am vigilant about such things and know what meds are due when and that I always like to know my laps ASAP so they often ask ME what I have due - I mean they usually check the chart just in case of course but it's quite funny they'll ask me "So what's due today? Anything? no cool"

Last week we had labs done and the nurse handed me the printout and said OK look over those and tell me what YOU think of them. So I had a little looksee and noted that potassium was good, calcium was just where we wanted it finally, phosphate good, albumn good etc... then I said you know that hemoglobin is a little high should we do something about it? And she said something like "well done I'd seen that too. You're on the ball" and we devised a strategy. (I later confirmed it with the specialist via email so it's all correctly OK'd).

All this gives me a real sense of having some measure of not just control over my treatment and life, but a real understanding of what is going on inside, and a feeling like I AM a part of my own treatment and also that the staff get that I have some idea about what is going on and what it all means so they don't treat me like a clueless idiot but actually talk WITH me through stuff. I really apprieciate that.

And of course knowledge and understanding is power. Personal power anyway. The power for me to be proactively involved in looking after myself.. rather than just sitting there and accepting what others say and do (which may be an error, or oversight). Another set iof eyes definitely can't hurt.

[Gramapat]

Yes - we do need to be very vigilant and not just in our dialysis treatment.  At all my doctor's appointments and all procedures I have, I ask a million questions.  After all, it is my body and I have a right to know what is being done.  It took me awhile to figure out things at dialysis but now I check everything and they know to ask me how much I want taken off.   

I can't believe how many people just come in and totally trust the techs and nurses to know everything and never ask any questions. 

[mysty]

I learned so much when Keith was here.  The site he went to let me in after he was on the first time.  I was with him for a while and fascinated by the machines.  They were older models.  But as i watched the tubes and the cycling and the numbers I caught on quickly.  Of course Keith explained them all to me.  The days I couldnt go I would call and get *he's napping, he's watching tv, his numbers are good*  The site is old but the people were nice.

THe one thing was.. in his home town.. when they pull out the needle.. he is allowed to hold and place pressure on his own site.  Then they would cover and tape it up.  At this location.. they wadded up a pad.. held it down really hard and then taped it down.. really hard.  By the end of three weeks.. Keith was sore and could straighten out his arm.  Now that he's back in PA.. He's doing his own method again clotting the site and his arm is back to normal.  Something that definitely will be brought up and fixed.

I checked with a load of friends that are nurses and the old method was wad clot and bend your elbow.  The proper way (if you can) is wad, clot and hold your arm up.. not straight out or down or bent.    Keith's fistula is right above the bend of his elbow and not every one's is at the same location.  Have to do what is right and works for you.

[Hemodoc]

Yes, I completely agree with being vigilant with your own care on dialysis. I am on vacation in Idaho this month and have a new unit where they double check all of the orders with the techs and then the RN also comes over and checks to make sure everything is correct.  Nevertheless, even with this system of checks and balances, I have caught some minor mistakes such as my preferred temp and my Zemplar dose of 1.2 instead of 1.5.

On the whole, the more involved you are in your care, the more likely things will go well.  In fact, I posted a story on Bill Peckham's site showing the excellent care in center that promotes self care for All of its patients.  Yes, self care is the best care if you can't get on a home program.

http://www.billpeckham.com/from_the_sharp_end_of_the/2008/06/self-care-is-be.html

[devon]

All this discussion seems to point to the fact that "We're Patients, not Imbeciles!"

Kudos to y'all for standing up for yourselves!

-Devon

[Bajanne]

On the whole, the more involved you are in your care, the more likely things will go well.  In fact, I posted a story on Bill Peckham's site showing the excellent care in center that promotes self care for All of its patients.  Yes, self care is the best care if you can't get on a home program.

http://www.billpeckham.com/from_the_sharp_end_of_the/2008/06/self-care-is-be.html

That was an excellent link, Peter!  Thanks so much for sharing it!  I am thinking of copying it and giving it to our unit's supervisor.  There used to be one patient who would stick her own needles.  But she had an infection and her graft had to be changed and since it was moved, she hasn't started back doing it.
In my centre, self-care only means weighing yourself, taking your own temperature, washing your access site in preparation.  They don't even like to turn the machine towards the patient.

[monrein]

In my self-care unit we weigh ourselves, take temp, get supplies and set up our own machines and if we want to we can do our own needles.  I will definitely be doing that as soon as my fistula is a little more mature and I will be doing buttonholes.  The RN checks everything over on the machine just before we hook up.  The machines are the same models used for home dialysis so if that becomes an option in time it ought to be a fairly smooth transition.  Not all nurses can train me on the buttonholes and since my primary nurse can't, another nurse has been assigned to me to do that.  I don't find the needles at all painful and even less so when I do them myself but my skin is very thin from years of low-dose prednisone.  I remember from last time that as I got more scar tissue the needles hurt even less but the scar tissue was tougher to penetrate. The biggest worry with my needles is getting them in correctly so they work efficiently and don't blow the vein.  I've only run once so far with two needles.

I want to know everything about my treatment.....every single thing, no exceptions.  I also set my dry weight and check my pressure more often than the automatic machine setting to see if it's going too low and if I need to turn down the ultra-filtration rate.  If I feel too icky towards the end I also turn it down.  No one has ever argued with me about any of this.

[Adam_W]

Ahh, self-care is the best! It's so good to be able to do my treatment entirely myself, and not having staff telling me "you have to do it our way with no argument". I really would like to see more patients who are able to take control of their treatment, even if it's not 100% "self-care". Simply demanding to be able to see the machine if you want to, or telling the staff exactly how much fluid YOU want taken off, is a great way to be involved with how your treatment is done.

Adam