Dialysis sucks once again

[kitkatz]

Davita or just my clinic has decided in its wisdom to stop all sodium on all patients all at once last Monday night.  I have been on dialysis for fourteen years and have used sodium variation ALL fourteen years.  I cramp mid treatment without it and my BP goes more berserk than usual.  WIthout it I have many problems.   Three nights now, no sodium, awake at midnight, arm cramp lightly first two nights.  BP dropping into 50s.  2nd night no sleep, bp crashing.  Third night cramp at midnight and bp drops.   I told them Monday night it would not work for me, now three nights behind us without sodium and they believe me.  I am told they will do sodium Monday night.  They better.  I have had low BP all day today and my arm is cramping along with leg cramps from 4 a.m to 10 am. this morning.  No rest for the wicked I guess.

I want to know who the idiot was who decided to cookie cutter our treatment.  Dialysis patients are all different and I refuse to have cookie cutter treatment.  Monday night I get my sodium or I give a letter to the boss.

[Riki]

I hate when they do that.. you'd think they'd know that everybody is different.. I mean, isn't that why we have prescriptions for dialysis, because our treatments are different?

[geoffcamp]

As a 12 year veteran I have serious concern and fear that these large "big brother" dialysis clinic owners (the big D and F) will be the death of some of us. Whether it be trying to put everyone in one catagory or via cost cutting measures. Right now it is my biggest fear. It all seems so far beyond our control until something seriously goes wrong and then they will lump us in to "acceptable losses" for their own big picture and profit. I often wonder if my nephrologists feel the same as I. They too are held hostage by being under contract to these large companies. I truly hope you are able to manage your care and receive the treatments and medice you need. We all must be vigilant in educating ourselves so we are aware of what we require to feel the best we can. Good for you taking notice and advising your staff this is unacceptable. Not a one of us is the same. Native or working kidneys come in all shapes and sizes to do the work it takes to keep a heathy person living it should be no differant for those of us on dialysis. Good luck. G.

[kitkatz]

My letter to my center.

RE: Nocturnal  Dialysis Treatment

To Whom It Concerns:
     On Monday, March 4, 2013, I was informed by my dialysis tech and unit nurse that the dialysis center would no longer be putting sodium variation onto my machine as part of my dialysis treatment.   They explained to me that is what a clinical decision based on what the doctors thought was best for all of the patients in the clinic.   I was not given a written confirmation of this policy.

I objected strenuously to this change in my dialysis treatment.  I have been on dialysis treatments for fourteen years. Early on my dialysis team discovered that I have to have sodium variation added to the dialysis treatment.  Otherwise without it, I cramp in the middle of treatment, which causes fluid to be returned, causing me to become fluid overloaded.  This becomes very dangerous for me as a dialysis patient.  In addition cramps in the middle of treatment are very uncomfortable. 

Here is what has happened to me during treatment at Magnolia West since Monday, March 4, 2013, when new treatment directives went into place.

Monday: I woke up at 12 a.m. out of sound sleep feeling funny.  My blood pressure dropped into the 60s that night.  I had extra fluid given to me and left over my dry weight.  I had cramping in my fingers.
I told the unit nurse I did not like the new changes.

Wednesday: My BP dropped back in to the 60s.  I had cramping in my fingers again.  Again woke up at midnight not feeling well.  I left dialysis above my dry weight.  I told my tech and the unit nurse again I did not like the new changes to my treatment.

Friday night: Again I woke up at eleven thirty, this time with a very serious cramp in my right foot.  My BP was in the 60s once again.  I had extra fluid given to me.  I was awake all night not feeling well.  The back of my left arm cramped as well during the night. I came off of the dialysis machine early and was required to sign paper work declaring I came off the machine early.  I left fluid heavy that morning.  Once again I told both my tech and unit nurse these changes were not working for me at all.

Saturday morning: I went home feeling bad.  I had a headache and body aches.  I was light headed with a low bp.  I crawled into bed at 4 a.m. hoping to sleep. My sleep was interrupted by leg cramps from 4a.m until 10 a.m. when I finally gave up trying to sleep.  On Saturday the back of my left arm cramped several times. My bp had dropped several times today giving me dizzy spells.  I have spent the day in bed or sitting down instead of doing errands or doing things I would normally do on a Saturday.

It is also in my history as a dialysis patient that my blood pressure acts weird.  It will drop during treatment for no reason.  It will bounce up and down throughout treatment. So any changes made to my treatment plan or prescription will have an adverse affect on my blood pressure.

I want it known that the changes that have been made to my dialysis treatment on someone’s whim, are not working for me. I am not a cookie and do not want to be treated with cookie cutter treatment.  I have a prescription for my dialysis treatment that has worked for me over the past several years.  I do not like it to be messed with by anyone but my personal nephrologist in consultation with the dialysis center doctor and myself.

Being told unilateral changes were going to be made across the center to all patients does not sit well with me at all.  I also see that a lack of written confirmation for these directives was not given to me a patient.  Changes were made to my treatment with consulting with me. I was just told by staff they were going to happen. Since I am the one most affected by these changes I need to be included in deciding if these changes fit into my treatment plan.

Taking the sodium variation off of my treatment plan is harming me physically.  I am requesting that sodium variation be added back into my nocturnal dialysis treatment.

In the future, changes to my treatment need to be discussed with me PRIOR to being implemented.  I do not like being informed what will happen to me and then have adverse effects because of it. 

I am still working full time as a special education teacher.  I need the few hours of sleep I get at the dialysis center Monday and Wednesday nights.  I also need to have blood pressure appropriate for work.  I do not need to cramp in the middle of the night or after I return home after treatment; nor do I want to feel bad for an entire weekend.


To reiterate and sum it all up:
1.   I am not a cookie cutter patient and will not be treated like one.
2.   Unilateral decisions based on what a doctor or Davita thinks is good for ALL patients, does not follow a treatment plan or dialysis prescription.
3.   I have the right to be included prior to changes in my treatment plan, not after it has happened.
4.   I want written confirmation of any changes that are being made to my treatment plan.
5.   I have the right to refuse such changes in my treatment plan.
6.   I want the sodium variation put back into my treatment plan immediately.

Sincerely,


Nocturnal Dialysis Patient

[Jean]

Seriously Kit, I do NOT know how you manage to continue working!!! I would have said " enough" years ago. Hope they listen to your letter and change your treatments immediately.

[cassandra]

Stunned I am, good luck with the good fight, and hope you feel better soon. I hope more patients will be standing up for them selves.

Love, Cas

[okarol]

  Give 'em hell Kit!

[Rerun]

Your Nephrologist is the only one that can change your Rx for dialysis.  That letter needs to go to him/her and a phone call and a personal visit by you.  I bet he/she knows NOTHING about the change.

Good Luck.  They are probably cost cutting again.  Maybe vomit all over so they have to spend money on clean up. 

[jbeany]

    Go get 'em!

[thegrammalady]

a sodium profile is part of doctors orders. it's illeagle to Change it. medicare and others will rain all over their parade! call your neph!

[Rerun]

I checked with my clinic and we still do sodium variance (if the tech working knows how) but the clinic got rid of "Hypertonic" which is a high concentrate of sodium which came in a little vial and it helped with severe cramping without all the extra fluid.  Cheap Bastards.

Kit try drinking Tonic Water.  It is not that expensive and you don't have to drink a lot.  Try a cup before leaving for dialysis.

[BobN]

Just when you thought you'd heard everything.

I've found that when I wake up to cramps, some soup or broth will help.

Quickly and cheaply.

Your center's administrator must have rocks in their head.

[Leanne]

All we are to them is a bottom line, dollars and cents.  At my center they started putting tourniquets inour bag and told us to bring them every treatment so they wouldn't go through so many.  If they can cut a courner to make a dime they will.  Sadly I dont think our wellbeing really factors in most of the time...

[Speedy1wrc]

At least your center uses tournequets! It wasn't till started travelling to other centers that I found out how bad  my center was. Then when I started Home Hemo, it really hit hard how many corners they were cutting. The sad part is they were and are all DaVita centers but mine was so far off course it wasn't funny. It was if they just did whatever they wanted without regard to policy or protocol, unless of course it was in their favor.

Be careful of Tonic water, it can cause stomach "distress".

Vitamin D3 and vitamin E may help as well as Magnesium. check with you Dr first as the levels can build up to toxic amounts if you take too much. Your Dr can also prescribe Neurontin which will make you very drowsy, but will help drmatically with cramping. It also helps with RLS if that's an issue too.