completely heartless

[gothiclovemonkey]

so.... where to start.
ive been really.... down... to say the least, lately. there is a lot that came to my attention recently, all fairly horrible things. and ive been contemplating just giving in the towel, so to speak.
anywho, i was visually upset, and i was asking the  tech how one would stop the process of doing the D.... her reply was simply, "You leave, you walk right out the door. If you dont want to do this you dont have to, you can leave, are you going or stayin"
Is it just me or could that not have been more cold?
(and i thought there'd be some kind of paper work or something??)

and today, i called them to see if i could reschedule a different day, because some really crazy stuff has happened, and i had some things i really needed to get done now, not later, so anyway, i told them that, and also was trying to express that i was sorry that lately i hadnt been the best patient but i do try, and want to try harder, but i need them to assist with my issues during treatment, instead of flat out ignoring me, or making some seriously rude comments under their breathes..... but i was met with her cutting me off and asking if i plan on coming tomorrow..... and that was that.

these people probably wouldnt bat an eye if i slit my damn throat right there in the chair, hell theyd probably happily push some extra heprin




Edited: Moved to Dialysis centers threads- noahvale,Moderator

[Michael Murphy]

The problem is the center you are going to hires people that are in it for the money not as a profession.  They see every one as a task not as a person.  When you have any problems they see it as a bump in their schedule.  I would look for a different center where professionals work who care for patients not one that is staffed by people who just want a paycheck.  Don't let the dweebs in your center push you into a hasty choice.  Find a better center with people who will help you with the burden you are carring.  This Dialysis life is not easy but with a good supportive staff at the center you go to it can be a lot easier.

[gothiclovemonkey]

that is unfortunately not a feasable choice

[Simon Dog]

that is unfortunately not a feasable choice

Have you considered home treatment?   It's a significant commitment, but some people find it is a much better way of life.

[Michael Murphy]

Tenn you have to realize what you are dealing with.  If you expect treatment with a caring supportive staff you will be shocked when you realize that they are a complete bunch of [CENSORED] jerks.  You can't fix them they are terminally broken. You however can keep your self above them and put CMS on speed dial.
Know however that it's not you, that if you let them beat you down they win,.  Don't quit dialysis if that's your only option contact CMS (Center for Medicare Medicaid  Services). They re the group that monitors the quality of care given at centers they certify.  They can put a serius hurt on a center by decertifing them.

[KidneyThief]

Have you considered seeking the help of an advocate? If nobody within the dialysis company, even higher up the ladder, is willing to help...going to a third party might be a feasible option?

http://dialysisadvocates.com/

This Arlene Mullin seems to have a knack for pulling heads out of asses. I just started reading about it...watched a webinar with her giving a talk about some pretty unfortunate goings-on in the dialysis industry, then visited her official site in the link above, poked around some more. It could be worth looking into, GLM.

I hope that something gives and these people change their ways soon. They need to remember that while you're a patient...you're also a person too. If they can't respect someone as a person, then they need to be outta there. I really, really hope that you can get some advocacy somewhere because you don't deserve to be miserable on top of all the other trials. It just ain't raght!

[gothiclovemonkey]

I learned a very valuable lesson yesterday. I should not be allowed to write letters (or shop) when im upset.

So, I wrote a letter to the head lady at dialysis. Somehow, she misconstrued what I wrote so badly, that she felt she needed to try to have me committed last night. Which is something I simply couldnt do. I have a child to worry about. (there IS some serious crap going on in our lives right now, that i may very well be having a nervous break down. I dont even remember what I said in the letter, really, but I didnt think it said anything that put off this vibe....)
I simply remember when I wrote it, I wanted them to know how I was feeling about dialysis.... apparently I made them feel like I was losing my mind a bit.... SO they called my case manager (similar to a therapist) and told her I wasnt doing too well. They said the only way they wont make me go to the looney bin would be to "contract for saftey" and allow a crisis worker to call me (which, they never did.... which i find hilarious!) They made me late coming home to meet my sons bus. (which made me feel even worse, but he was fine... he is 10, i guess i just worry about him like hes still a toddler or something haha)

My intentions were to simply get help to be a better dialysis patient. I know im not the best.... hell, not even close. I do try to do things I am supposed to, and stick on my treatments, but those of you who know me, know im dealing with a lot, and they dont seem to get that. they dont listen to me, and somehow they ALWAYS misunderstand me. Its got to be me, i guess, I am not so good with the speaking. I struggle with it, so when its during something like, my cramping, it is really difficult to get out any understandable sentences.

Ugh! so I have no idea how the next few days will be

I do feel i need some kind of help to get through everything thats going on in my life. I know I cant go to a hospital, i cant do that to my son.
But I think the way they handled that was a bit messed up.

anywho, i guess ill see if my note helped with all that or not.... go from there.

[Charlie B53]

Does your d clinic have a Social Worker that visits with every patient every day during treatment?  Does this person LISTEN?  And follow through on any suggestions or complaints?

This may be a place to start.  If they do not have a Social worker on-site then start asking where they are, how do youo reach them?

While at home and thinking a bit more clearly, not cramping and in pain.  Grab a pen and paper and start making notes. 

What are your current problems?  Personal, professional, things at the clinic?

What do you see as the cause?  Is it procedure, or attitudes

Any suggestions on ways to improve any of the above?

Taking the time to spell out everything can help you get your thoughts organized so you don't seem so 'out of it' to the administration.  If you can make a valid complaint, spelling out what, when, where, how, and possible Why, you have a far better chance of getting administration to pay more attention to your situation.

I hope this is helpful.  You are not crazy, nor are you 'breaking down'.  You do have a significant amount of stress, and if is very difficult to make changes in an organization where most of the staff do not seem to care about anything other than a paycheck.

[KidneyThief]

Also maybe seek outside counseling. There's nothing wrong with going to see a professional. It doesn't have to be a PhD who will charge you out the ass for an hour session, but even just a licensed counselor who works on a sliding scale or takes insurance. It doesn't mean you're crazy. It doesn't mean anything is wrong with you. But LIFE is hard enough. Trying to navigate it with freakin' kidney failure? Most people wouldn't want to walk a single damn day in our shoes. They can't even comprehend how emotional ESRD is. Unfortunately, doctors and staff in their fields become desensitized quickly. It's just what happens and probably what has to happen in order for them to be able to walk out the door and go to work each day. But someone on the outside with no bias, no invested interest in dialysis companies, with actual time and professional listening and advising skills might be able to help you with some of the emotional aspects that are dragging you down. And you can find someone that is a right fit for you. Not just some random social worker at clinic that you got stuck with by default.

Last year I got to a point where I was so fed up with everything. Frustrated and hopeless feeling. I was resistant to any types of anti-depression meds and shirked the idea of seeking help from a counselor. I ended up in the hospital after finally deciding to OD on my meds. Let me tell you...it was not a fun thing. I had to stay for 3 days, with a "sitter" in the room at all times. I wasn't allowed to go anywhere without an escort. I probably did no favors to my kidneys with all those toxins. The worst thing was the transplant team informed me my status on the list was being suspended. The hospital psych was recommending I be committed to a facility even if it was against my will. Luckily, my mother, who is my legal patient advocate, got me out of this promising that I see a psychiatrist on a regular basis for at least 6 months. So I did. It helped a lot. I regretted not doing it years prior. I finally decided to try an anti-depression med despite my reluctance still...but it too helped. I really regret that I had to hit rock bottom in order to get the help I couldn't admit to myself I desperately needed.

I tell that story to emphasize the point that the dialysis team are not the ones to go to with woes. It seems to either go nowhere with them...or get greatly misconstrued. And the transplant team wants patients to be cheerleaders for dialysis. They don't like hearing someone is thinking about 'throwing in the towel'. A depression diagnosis can severely hinder the process of getting a transplant. Their reasoning is basically: If you can't handle dialysis, how are you going to handle a transplant? And keep in mind...your body is struggling to maintain order without the help of your kidneys. Your natural vitamins, minerals and bodily chemicals are out of whack. Kidneys affect ev-ery-thing. Including the hormones that regulate your mood. A little boost from an SSRI might not be a bad thing to consider if you aren't already. You may even find that once you are in control of your emotions...not the clinic staff...that your treatment anxiety will decrease some. Just going on personal experience here. It's at least something you can do that you have complete control over while the problems with the shitty clinic get sorted.

[Charlie B53]

All good points Kidney Thief.  Glad you finally got the help/treatment you needed.

In ALL cases, making notes, things you want to address, helps, as when we do get the opportunity to talk to someone, we forget, a lot, so much that some of the seemingly most important things are left out.

Write them notes whenever and where-ever you are, stick them on the refrigerator (I do) or put them somewhere so you will have them.

And above all, re-post to let us know how you are doing.  I can't reach out to give you a hug from here, but you need one from others, like us, that care.

Charlie B

I am sooo glad this machine has a spell checker, you''d all think I'm illiterate or something by the number of spelling errors it finds.  My right ring finger is wayyyy to heavy. lol

[gothiclovemonkey]

I am currently, and have been since i was 11, been in therapy. anti depressents dont seem to work on me, and ive tried many many many. if anything, they make things so much worse.
Im currently dealing with like... a trillion things, one being unexpected divorce...

I make notes constantly, and usually write down a script of sorts when talking with people because i suck at it. haha

if things dont change after my letter, and all that crazieness then i will contact those numbers