My worst emotional breakdown since dialysis started

[Adam_W]

I came the closest to giving up completely today. It was really a combination of things that set me off, but the biggest issue was the same one that has been pushing me to the limit for a long time-the dialysis company not allowing me to help with my treatment. One of the main things that set me off today was my simple request to change my own permacath dressing because it still hurts a lot since the new one was put in. I wanted to clean and change it myself because it was really going to hurt when that was done, and I wanted to be the one hurting myself, not having someone else hurt me. My tech denied my polite request to do it myself (she was polite herself, so I will at least give her that), and that just set me off. Not anger (that might have been better), but depression. Right after I was taken off the machine, the depression just hit me all at once, and I ACTUALLY COLLAPSED ON THE FLOOR NEXT TO MY MACHINE! A couple of my nurses rushed over to find my tears flowing like a baby's, and they helped me up and took me to the unit manager's office (they wouldn't let me go home until I was calmed down). The unit manager and the nurse (my favourite staff member) talked to me and helped me calm down. They genuinely know why I'm upset, and they really do try to understand (as much as a non-dialysis patient can understand), but they have policies that they have to follow as well. I just feel that the company that's doing this to me (DSI) is taking away my rights as a patient. Their excuse, which is liability, doesn't fly with me, because they would be more than capable of having me go over and sign documents indicating that I wouldn't sue if something went wrong, therefore protecting their company. It seems like I'm having lots of emotional ups and downs, but if this keeps up, I may give up, and I don't want to do that. Take care.

Adam

[goofynina]

Aww Adam, I am so sorry you are having a rough time with this damned disease.  Was there a reason why you couldn't go on PD?  Have you thought about it?  If you need any info, just ask buddy, i'll tell ya whatever you want to know.  I was very depressed on Hemo, but since switching to PD i have a new outlook on things, i know that PD will not last forever but you better believe i am going to take advantage of the little freedom and much more happiness while i can.  Hang in there and hope your having better days soon. 

[George Jung]

Can you change the dressing before you go to the center and then refuse to have them do anything to it?  I know this is a cliche but "when there is a will there is a way".  I find it really frustrating sometimes dealing with people thinking and doing for me, you just have to say p*ck em and do what you want.  If I need inspiration to get that attitude I just listen to some Megadeath, Slayer or something like that to pump me up.  Be strong brother, you wouldn't have made it this far if you didn't have it in you.

[Joe Paul]

Dont give up man..things will work out for you. Ill keep you in my prayers.   

[Sluff]

I think i would listen to George on this one. Maybe try and clean it yourself prior to your visit. I don't think they can force you to have them do it again. I'm not on Dialysis, and I don't pretend to know what you are going through, but I do know you don't want to give up and that is a good sign. Depression is hard to deal with, that, I do have plenty of experience with. Do you have a social worker that you could use to advocate for yourself? Hang in there friend and we are here for you. PD would give you more freedom though.

[carolyn77531]

 ..i dont know or understand what its like being on dialysis...My daughter is on pd and she has been on hemo for several months..i didnt like her being on hemo...traveling back and forth was so time comsuming i cant complain about the nurses they are wonderful...what goofynina was saying about pd its true...at least you have control...

[thegrammalady]

i would tell them that if they don't let you do it your way that you will sue. we had a very strange situation when my kids were little. we had just moved into a new housing development and we and others wanted the county to put a stop sign on the kids walk to school. the county told us that it would exceed safety standards, therefore if someone ran the stop sign and hit a child the county would be liable. problem is i would never sue the county if you ran the stop sign. but if my child was hit because they hadn't put up the sign i sure would.

GET MAD adam!! the center hasn't changed my dressing for months. i just say no. they have stopped asking. changing the site doesn't mean it won't get infected. in fact there is a school of thought that says once it heals over, leave it alone, don't even cover it. tape bothers my skin, i haven't used a cover for a long time. try having a talk with your neph and then have him talk to the center director. or better yet complain to the center directors's boss. if things get worse, medicare has an 800 number.

[Adam_W]

I am waiting to start training for home hemo. I considered PD, but I don't like the physical issues and restrictions of PD, such as not being able to lift more than 20 pounds (or so I've heard/read), and the location of the catheter. Home hemo is a better option for me. I know obviously it won't magically solve all my problems, but I do know that it will give me the freedom and control that I desperately need. I'm having a lot of trouble dealing with the delays that are happening, however. I actually GAVE UP on getting in the NxStage program, because the waiting list just to start training is four to six months. I've only been on dialysis a little over two months, and I've been having enough turmoil in-centre in that short time, so I've got to get out of there soon, and I mean REALLY soon. I'm working on getting on with the Fresenius home clinic because I may be able to get in much sooner (even though they are taking their old sweet time getting back to me with certain information). I'm sacrificing the portability of the NxStage, for the shorter waiting list of the FMC clinic. I'll be using a Fresenius 2008K@Home, and that is a pretty good machine, even though I can't pack it up and take it on a trip. That is an acceptable sacrifice for me, however. I just wish there was something I could do to speed the process along, or at least something to make me more at ease until I do get in. Gee, lets see, Oh, I don't know......HELPING WITH MY TREATMENT IN THE CENTRE! I guess that's just too much to ask, though. Oh well, back to being passive and uninvolved. At least the staff let me turn my machine toward my chair. Take care,

Adam

[goofynina]

Adam, the key is that you are on your way. That is good to hear, you will feel better (mentally especially).  Your not supposed to lift anything that heavy while on Hemo either, at least that was my understanding, anyways,  you just have a little patience, your time will come.  and if it dont, do not hesitate to speak out, the louder you are the quicker they will want you out of there   at least i know i would   Hang in there amigo and keep us posted. 

[jbeany]

I'm with George - do it yourself before you go and refuse to let them.  You should have the right to refuse any treatment you don't want.  If they haven't given you a written copy of your patient rights, demand one.  Changing the bandage yourself won't solve all your problems, but it is a start.  Hang in there; we're here for you!
 

[ILOVEFLUID]

Adam, I am a 35 yr old hemo patient.  I was on hemo for two years, had a transplant for 5 years and have been back on hemo for a year and a half now.  I always got pissed off when they wouldn't let me have any control over my care.  I have been waiting for a year and a half to get trained of self-care...they keep saying it is happening but it never does.  It infuriates me that i cannot check my own blood pressure, put myself in minimun or anything like that.  Instead i have to wait for the nurse to come over to me and do it and will probably  crash in the meantime.  So i caused a stink, I have meetings with the director of the center all the time, I complain in person, on the phone and in letters.  I let them know i am not going away.  It infuriates them but too bad, it is just their job, it is my life.  I found i was getting very irritable with the nurses or getting depressed and that was not goo.  The nurses have to follow policy and i don't want to get anyone in trouble with their job because i disagree with policy.  Depression is not cool for me either.  So i am now given a clonozapen to calm me down on dialysis.  I get my treatment safely with no trouble and i cause a stink when i m not on the machine.

I have been waitingiting qa year and a half for home hemo and got the call last week..  I start next week and word on the grapevine says i was pushed along because my center wanted rid of me.  Awesome, because i wanted rid of them much more...believe me.

Anyhow, don't let yourself get depressed, don't bother the nurses, bug the people in charge.  And keep bugging them.  Who know, maybe they will get rid of you like they did me

[kitkatz]

I am the one that lets the center director know what is going on in the unit and how unhappy I am with treatment if anything goes wrong. You have to let them know how unhappy you are with things and remind them of the patient bill of rights.

[brenda]

Hi Adam. I have been a home hemo patient for 13 years. If you want to be making your own decisions and  doing stuff for yourself, being at home is a good choice. You really learn how to just do your own thing. You still stick to the basics so you don't compromise your care but you learn your own tricks. It's more comfortable, convenient and I am much more relaxed. On days when I have had to run at the unit, I hear ya, I hate it. I tend to be a little grouchy. But I just try to relax and look at it like "good, somebody else has to clean this up for a change". I know I was just like you at first but you just have to remind them who's the boss of your body and that would be you. Be patient it will come.

[anja]

Sorry for the current distress you are having to deal with, Adam.  How can units be so very different???  There needs to be a patient advocate at each unit that knows the ropes, preferably a dialysis patient!  The ideas expressed here are good ones, just have to pick what trips your trigger and plow forward!  Best of luck~ you deserve it!   

[Chicken Little]

  I'm so sorry.  The only good thing about dialysis is it keeps us alive.  Everything else about it TOTALLY SUCKS!!!!  I hope you get your home hemo set up soon. 

[Wattle]

  Hang in there Adam.

Are you getting a fistula done or are you keeping the permacath? Do as George said... tell them you are now going to do the dressings, because when you move to home hemo you will have to do them. Go above their heads all the way to the top if you have to.

[nextnoel]

I'm not yet on dialysis, so I don't have firsthand experience with that, but I know the feeling that can come over me when IT'S ALL JUST TOO DAMNED MUCH!   I hope your home hemo gets set up soon.  In the meantime, HANG IN THERE - you're far too valuable to give up!  This WILL change, and eventually, you will  be so much more in control of your situation.  In the meantime, I am cheering for you,  and blowing raspberries at your clinic staff! 

[meadowlandsnj]

It seems like I'm having lots of emotional ups and downs, but if this keeps up, I may give up, and I don't want to do that. Take care.

Adam

Adam, I'll keep you in my thoughts and prayers.  You can't give up, you're stronger than that.  Don't let them get to you.

 
Donna

[jedimaster]

I hear you man!
Home hemo is (at least for me) the best. i would not give up on the nextage, 4 to 6 months go sooooo fast, you will not notice. Where I live there is not such machine, so I am on a Gambro AK95S, which is next to me everyday....hmmmm...I call it VLAD.

[George Jung]

Adam, I think jedimaster is right.  You should not sacrifice what treatment option you want because of 4 - 6 months.  When you are depressed (like I have been) 4 - 6 months feels like an eternity but in really it isn't very long.  Go for your first choice brother!

[Adam_W]

Well, I would just wait for the NxStage, but my emotions are so unstable right now because of the stuff in the centre, if I waited, I might not be around in four to six months. I want to get going on home hemo as soon as possible, and maybe in a year or two, I can switch to the NxStage. I think, for now at least, the 2008K will be a better machine for me anyway. I know it's more labour intensive, but that doesn't bother me at all.

[George Jung]

I gotcha.  Do what you need to do bro.  Get out of the center asap and do some fine tuning when possible.

[Ohio Buckeye]

Try to take it a day at a time (or half day).

[kitkatz]

There are some days I go to dialysis and I wonder if today is the day I am going to lose my mind completely in the center.  I grit my teeth and give it a go. I think it happens to everyone. You are not alone.

[goofynina]

There are some days I go to dialysis and I wonder if today is the day I am going to lose my mind completely in the center.  I grit my teeth and give it a go. I think it happens to everyone. You are not alone.

Huh?  But Kit?  i thought you lost it when that day you said you were naked and you were vacuuming.................oh nevermind