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Author Topic: Need some advice/opinions please!  (Read 2381 times)
karen547
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« on: April 22, 2010, 06:56:20 AM »

As most of you guys and gals know I am going to be starting classes in May, and I am thinking of switching my time, because I would only have 1 hour after treatment to get to school, and that just wont work for me because I may need more time if something went wrong, or i don't feel well, etc. Now the only time available to me is 6AM, and I'm sorry but that just wont work because that would make my day extremely long- I start classes at 6PM, and go until 10PM, and then I will need to do HW, etc. So I would ideally want a 9 or 10 am start time. I think that I should get this because for one I know that a lot of the patients at my clinic don't have a job or school and really don't have to do anything else, so I think they should be able to accommodate me better than 6am! I may sound like a spoiled person right now but dialysis has taken so much from me already, I am just tired of bowing down to it, and want to stand up for myself more but want to do it nicely lol. So how do I go about telling them how I feel, without coming off like a b*tch?? lol Thanks for the advice in advance
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MooseMom
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« Reply #1 on: April 22, 2010, 08:24:11 AM »

I haven't started D yet, but I have gone by the clinic just to get the feel of things.  I was alarmed to hear the start times as I hated them all!  And then I was told that there are waiting lists for some of the start times!  It could be that your clinic simply may not be ABLE to accomodate you.  But it is certainly worth asking because there might be someone who is eager to have YOUR start time and you two could switch, I guess.  I'd just go in and explain the situation and see if they could accomodate you.  This is not selfish...it is your life!  I would hope that they could help you with this, if not immediately then at least in the months to come.  But I'd ask asap so that they would have time to move people around if necessary.  Let us know what you end up doing, OK?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
jbeany
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« Reply #2 on: April 22, 2010, 08:44:39 AM »

You should at least be able to get on the list for the start time and days that you want.  I don't think centers are willing to budge other patients out of their set times.  I know most of them may not have work or school, but that doesn't mean that their caregivers and drivers don't, so randomly rearranging the other patients' shifts isn't fair, either.

I realize running home after 10 pm classes to dive into bed isn't going to be fun, but you could always do homework while you are hooked up, instead of at night after class.  Hopefully, the schedule will be temporary.

When I started back to in-center after I had to stop doing NxStage, the only chair open was a 6 am start time, too.  I'm NOT a morning person, and the idea of getting up at 4:30 to get to the center on time sounded horrible.  But I did get used to it.  (Waking up to an alarm sucks no matter what time the alarm goes off, so earlier isn't really that big of a deal in the end.)  When they finally had an opening for the afternoon shift, I decided to stay on mornings.  (The other gruesome thing is that an "opening" tends to be just a nice way of saying "Someone on the shift died."  Mentally, I don't think I was that eager to jump into the open spot when I realized why it had just opened up...)

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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

Rerun
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« Reply #3 on: April 22, 2010, 08:54:38 AM »

That is one thing that really pisses me off about dialysis clinics.  They give the good times to the nursing home people because that is when the transportation is open.  To hell with those of us who want to work or go to school and be a contributing citizen. 

You go to the manager and to your Nephrologist and tell them why you need the time you want.  I think times should be a priority to those who work and go to school.  The rest can come when scheduled we have nothing to do anyway!

                :twocents;
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karen547
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« Reply #4 on: April 22, 2010, 09:02:09 AM »

I am just sick of dialysis taking over my life and my goals! I want a normal life again and I get sick of being on a damn machine!!  I am so tired of it all, and some days i want to give up, its been 3 LONG years, and I want a kidney so I can live my life the way I want too! I'm 24 years old and being there makes me angry and some days i want to just punch someone because i feel cheated, sorry i am ranting on and on but theres times where i feel  alone, and like nobody understands, and i know the time thing will work out but its just another thing i feel im fighting for, and i get tired of fighting all the time :banghead;
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karen547
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« Reply #5 on: April 22, 2010, 09:09:53 AM »

OMG RERUN I AGREE!! The OLD people always get the best times!! I was going to say that but didnt want to piss anyone off, but its true! I am going to put my foot down tomorrow and oh well if I offend anyone because I have a life to live, and its about time i start living it! dialysis has helped me i know but it has also made me give up a lot too. I will just explain to them that I NEED a better time, and if they cant do better than 6am, well maybe I will go to another clinic, lets see what they say to that, it is a FOR PROFIT clinic anyways, so if they want to lose me and the money they make from me fine lol
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MooseMom
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« Reply #6 on: April 22, 2010, 09:17:30 AM »

I hadn't considered the nursing home transportation dilemma.  I had assume that the earliest shift and the latest shift were sort of reserved for those who worked, anyway, so that they could have D either before or after work. 
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
bette1
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« Reply #7 on: April 22, 2010, 07:48:40 PM »

I would talk to the social worker about your issue.  I had to change times from 5 am to a mid day shift because of child care issues and they were able to accomodate me the next week.  It does suck that all the old people have the good times. 

I found that I actually liked the 6 am time better because I could go to treatment, take a nap and feel normal at about 2 pm.  With my 10 am time I feel like dialysis takes up my whole day and and can't do anything else.  By the time I recover from treatment it's 6pm and the whole day's done.
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Diagnosed with FSGS April of 1987
First Dialysis 11/87 - CAPD
Transplant #1 10/13/94
Second round of Dialysis stated 9/06 - In Center Hemo
Transplant  #2 5/24/10
karen547
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« Reply #8 on: April 23, 2010, 07:18:06 AM »

Thanks everyone. I am going to explain my situation, and hopefully they will be able/willing to help me out. I am going to only need to have my time switched to noon, and it's now at 2pm, so its only a 2 hour change, and the woman who is in my chair before me is in a nursing home, so hopefully they can just give her my time or something,
« Last Edit: April 23, 2010, 07:42:06 AM by karen547 » Logged
lunadatura
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« Reply #9 on: April 23, 2010, 02:02:03 PM »

as a young active person you really might want to exlpore moving to CCPD - its a bit of a pain to manage at home but WAY BETTER than in center hemo!!
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Diagnosised FSGS via biopsy 11/2006
Started Dialysis 5/2009
hemo-dialysis except 9.09-6.10 = peritoneal then back to hemo
currently in center hemo 3x per week
Evaluation for transplant July 2010
Almost received transplant 8.13
repeated calls and admissions for transplant since then but no kidney yet
3.1.14 got ideal kidney and having exceptional recovery - creatine went from 8.5 to 1.1 in less than 2 weeks.
karen547
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« Reply #10 on: April 24, 2010, 10:18:34 AM »

Thanks, but no thanks. I actually prefer in center hemo.  I would not want to do it at home
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