Leaving my center

[Lillupie]

 refuse to go back to my center. I am so angry at those people and I have had enough. I am not going back. Anyone else experience this?
 Friday was the day for my lab draw. My appointment is at 11:30am. Thrusday I went and got so more EPO. Last Wednesday the 29th of September was my September clinic.
 So on Friday I get there, and they tell me that they cant draw my labs without my kt/v, so I would have to reschedule. I mean since when is this a new rule??? Just a few weeks ago I brought in my kt/v after having my labs drawn. Well I am not going back. This is the first time I am told they cant do one without the other. And they did not tell me t his the day before or when I was there last week, nor did they give me the bucket for the kt/v. I just did a kt/v last month.
 They said it is a new rule. You mean to tell me that this new rule could not have been told me to me the day before.
 I am not going back there. I made a point to eat the strict diet, to only eating maybe once a day before my labs and i make a point after my labs to cheat. I am pissed off that they made me go up to the center for nothing! I mean I could not get my labs drawn?!! I refuse to go back there. Ever!
I didnt even want to go there in the first place at 11:30am when I have to pick up my mom at 4. and she works by there. They wasted my time and gas money.

Lisa

[gothiclovemonkey]

 
sorry they wasted ur time and money
i wouldnt try so hard to not eat before the test, just so u can see what ur labs are like on a normal basis... otherwise ur not getting a true lab result....... (which is why my labs always look bad lol i cheat all the time, but i dont hide it, so i know how bad i truly am no surprises thatway!)

[Rerun]

I don't know if this is a good thing, but when I no longer peed I no longer had to do the jugs.  They bring in the jugs and I don't get one.
       

[Marina]

Lisa,
It’s  is  so  difficult  for me  to  understand   you.   Are you  refusing  to  go to  clinic  visit  to  punish the  nurses?      HMMMMm
You  mentioned  you  followed  the  diet  day  prior  to   clinic  visit.    Once  again,  who  are you  doing  this  for,  the  nurses  or  yourself??     Because  I  hate to  break this  to  you,  but  following  the  diet  is  only  beneficial  to you  and  only you.  By  cheating  on the  diet  even if  it’s   after  your  labs  are  drawn   is  only  hurting yourself.  The  nurses   are not  going  to  be  affected  by  this  behavior.
Are you  on  the  list  for  Transplant??    (sorry  I  can’t  remember)…………..  by  not  doing your   labs   (whether  just  a simple  blood  test  of  Kt/V)  you  are  considered  as  “NON –COMPLIANT”    your  Transplant  center  might  not  see you  as  a good  candidate  for  transplant.
You  have  to  look  at  the  big  picture, and  the  whole  picture  as  well.   What  good  is  it  to  have  great  labs   (because days  prior  you  watched  your  diet)  when  deep  down you  know  they’re  not  accurate  because  you  don’t  follow  the  diet    the  rest  of the  time??     Don’t you  know  that  by  doing  all this you’re only  hurting yourself??   The  internal  damage  is  not  visible  to  you,  but it  might  be  there.
Sorry  if  I  sound  so  harsh,  but  it’s  true.      A  short  story,  as   a  teenager  and  newly  diagnosed  diabetic,  I  used  to  be  really  good  about  my  diet  in  front  of  my  family  and  friends,  but  I  would  also  hide  to eat  candy  bars…….. guess  what,  the  damage  I  did  to  myself  was  not  visible  instantly, but  3yrs  after  diagnosis  I  was  diagnosed  with  cataracts  at  age  17   (cataracts  are  usually  seen  on   folks  over  65-70yrs  old, yet  at  17yrs  old  I  almost  went  blind).             Then  the  damage  I  did to  my  kidneys,  well   we  know  about  that  too.     
 Think  about   what you’re  doing,  if not  for  yourself,  for your  family especially  for   your  daughter.
Take  care!
Marina

[Lillupie]

I am sorry people. This has worked for me. I dont cheat much, but when I do, I look forward to it. I know I have the 3 weeks or so before the next draw to fix it. It has worked for me. My phos labs have been pretty good, so to me this is what works. I just didnt like that they could not tell me before hand, like when I was there the day before, here is a jug", "we cannot even draw your monthly blood work without the kt/v". that would of been fine, but no, they wasted my time.

Lisa
I dont think there are few people here who can tell me that they never, ever cheat. I do only after labs because I dont want something showing up and me freaking out over it. I have to have some enjoyment out of life or food.
I mean think about it people, when do you cheat. You cant tell me you never, ever, not once eat a piece of cheese or a spoonful of ice cream?

[Marina]

Lisa,
I  never  said  I  don't  cheat.    I  do,  we  all  do,  but  unlike you  I cheat  in  smaller  quantities,  and  when I  do  eat  1 oz  of  cheese  for example, I'm  just  careful  for the  rest of the  day.  I  don't  go  and  eat  a  an  entire  package   (but  only  because I  don't  buy  a  whole  package,  I  only  buy  one  stick of  cheese  at  a  time,  I  know  myself,  I  have no  self  control when I  have  cheese in  my  fridge     ).

[glitter]

Lisa,
I  never  said  I  don't  cheat.    I  do,  we  all  do,  but  unlike you  I cheat  in  smaller  quantities,  and  when I  do  eat  1 oz  of  cheese  for example, I'm  just  careful  for the  rest of the  day.  I  don't  go  and  eat  a  an  entire  package   (but  only  because I  don't  buy  a  whole  package,  I  only  buy  one  stick of  cheese  at  a  time,  I  know  myself,  I  have no  self  control when I  have  cheese in  my  fridge     ).

My husband struggled daily with this diet- its important to remember every persons journey is different, and while being here to offer encouragement and advice, It can alienate someone who needs help to be directly judgemental .

Lisa,
  It does sound like what is making you mad is the loss of control this is having on your life, I'm sorry for that- is there another center you can switch to?

[Lillupie]

Marina,
 I might have self control, but it goes out the window the day after labs. It might be better for me to eat in smaller quantities then be strict and splurge or gorge, however you want to put it. That little 1 oz of cheese I would rather wait until labs. lol

Lisa

[KICKSTART]

I dont understand why you cheat?  If you are bad , you're bad!  Its like saying im a non smoker , then nipping out back for a sneaky ciggie !

[Lillupie]

Life is short, why not enjoy what you like once in awhile?

you mean to tell me you never, ever, cheat?

Lisa

[gothiclovemonkey]

heh i cheat all the time, but i also like knowing what my labs are like when i cheat, and surprisingly usually arent half bad. My protiens always low, and my potasium is usually over what they like to see, but its usually not terrible CONSIDERING i dont really ever follow that diet. (i know im terribly bad) I would follow the diet if my body wasnt so evil. At this point for some reason i cant eat properly. I crave things to eat, and if im not eating what i crave i literally cant stand to swollow whatever it is. very strange new thing im dealing with.
I think Id have to agree, live life and enjoy it, even if it means being a bit of a bad girl! (i just think one time though u should see what ur cheating does to ur labs, so ur aware of how much it really is...)

Everyone IS different, and we should follow our "rules" but sometimes we just want to live...

My biggest hurdle is the fluid restriction, and having to eat more protien... yuck. and not having my potatoes!!!

[jeannea]

OK I get it you're mad about being on dialysis. Aren't we all?  Isn't that what this site is? But you're only hurting yourself by not cooperating with your dialysis center. Yes they should have told you about the kt/v. But refusing to go back isn't the answer. And I've read your other posts. I suspect the only reason they're being harsh with you is because you've been so resistant. You deserve good care from them but you also need to meet them halfway. Some of your care is up to you.

For ex. with the problem where you wanted to come in around 4pm because of meeting your mom, at my center we have to get our labs drawn before 2PM because that's when the pick up is to take them to where the blood is tested. If you come in after that on a Friday your blood would sit all weekend and they couldn't test it anymore. Then they'd have to draw it again and you would find that a waste also wouldn't you?

Are you making any effort to show your doctors/nurses that you're trying to take care of yourself? To take an active role in your treatment? That's all they're asking for and I don't think it's too much to ask. A lot of us are working really hard to stay healthy enough to get that transplant.

And yes, I don't follow the diet to the exact letter. The difference is I'm honest with them and they respect me. I do my best and if I want ice cream sometimes (read: often) then I just have it. But I take my phosphorus binders with it. I don't lie about any of it. I gave up hot dogs and some other things but kept ice cream and potatoes. Most of the time my numbers are fine. It's not cheating if they know about it. They're not stupid. And in their hearts most of them understand it can be hard for us.

I think you need to take a hard look at what you really want and what's important to you. If you want to die, then that's your choice. (not trying to start that discussion again) But if you want to live then you're going to have to find a few compromises in your life. Of course it's not easy. Not for any of us. But leaving your center won't help because EVERY center will have similar rules. I haven't heard any story that sounds like your center is out of line.

[Lillupie]

My problem with my center is WHY DIDNT THEY TELL ME THE DAY BEFORE AND THE WEEK BEFORE I COULD NOT GET MY LABS WITHOUT THE KT/V?? I was there the day before and they could of told me the 24hrs so the next day I would not waste my time and gas there.
Get it? For consideration, they could of told me AHEAD of time what to bring in. Getting labs was never, ever an issue before.
Get it?

Lisa
I am not trying to be out of line here at all. I do everything that I am suspose to.

[Lillupie]

Jenna,
 It is NOT the dialysis itself. Its the change of the rules that was not there a month ago.  I have done everything they ask. My labs are NEVER out of line. I perfer to keep them that way. I know when to cheat. That is what works for me. Getting a Ktg/v at the same time as labs was merely for convience to not have to come back a second time. Now you cant get one without the other. THat was never an issue. You can still get your labs drawn, and bring the kt/v in another day.
Get it?

Lisa

OK I get it you're mad about being on dialysis. Aren't we all?  Isn't that what this site is? But you're only hurting yourself by not cooperating with your dialysis center. Yes they should have told you about the kt/v. But refusing to go back isn't the answer. And I've read your other posts. I suspect the only reason they're being harsh with you is because you've been so resistant. You deserve good care from them but you also need to meet them halfway. Some of your care is up to you.

For ex. with the problem where you wanted to come in around 4pm because of meeting your mom, at my center we have to get our labs drawn before 2PM because that's when the pick up is to take them to where the blood is tested. If you come in after that on a Friday your blood would sit all weekend and they couldn't test it anymore. Then they'd have to draw it again and you would find that a waste also wouldn't you?

Are you making any effort to show your doctors/nurses that you're trying to take care of yourself? To take an active role in your treatment? That's all they're asking for and I don't think it's too much to ask. A lot of us are working really hard to stay healthy enough to get that transplant.

And yes, I don't follow the diet to the exact letter. The difference is I'm honest with them and they respect me. I do my best and if I want ice cream sometimes (read: often) then I just have it. But I take my phosphorus binders with it. I don't lie about any of it. I gave up hot dogs and some other things but kept ice cream and potatoes. Most of the time my numbers are fine. It's not cheating if they know about it. They're not stupid. And in their hearts most of them understand it can be hard for us.

I think you need to take a hard look at what you really want and what's important to you. If you want to die, then that's your choice. (not trying to start that discussion again) But if you want to live then you're going to have to find a few compromises in your life. Of course it's not easy. Not for any of us. But leaving your center won't help because EVERY center will have similar rules. I haven't heard any story that sounds like your center is out of line.

[jeannea]

No I don't get it. I can see why you're mad about this one day with this one nurse. Did you ask what happened? Did you talk to the center director? There are avenues to deal with these things rather than quitting. And no it's obvious you don't do everything you're supposed to do. You're the one who's been saying you won't do the kt/v. You're the one who's saying you cheat. I've read your other posts.

It's not that people here don't want to have some sympathy. We all have bad days. I just can't see that you want anything other than for us to say that of course you're right, you couldn't possibly have your own part in this. Have you read KICKSTART's posts? That's a center that mistreats you. Your center screwed up one day and you're ready to trash them. What kind of sense is that?

I guess my question is were you just venting or were you serious? Are you quitting your center because of one nurse on one day and one misunderstanding? Let me know where that perfect center is that you'll never ever have a possibility of a misunderstanding with. On the other hand maybe it was all hyperbole. In which case never mind.

[KICKSTART]

Maybe you misunderstood me ? I didnt mean why DO you cheat , i meant why cheat , why not do it openly, the only person you are cheating on is yourself , the nurses arent bothered if you dont stick to the diet. I have never followed a renal diet in 7 years , but that doesnt mean im not sensible , i dont eat a whole pile of stuff full of potassium , but i will a bit of those things every now and again. Im open to the renal staff about what i eat and they tend to agree with me. I do have an issue with high phos , but thats because i cant tolerate binders, otherwise i pretty much eat what i want. The rest of my bloods come back in the good range , which does make me wonder , just how much do you need to follow a renal diet ?

[Lillupie]

The rest of my bloods come back in the good range , which does make me wonder , just how much do you need to follow a renal diet ?

I agree my labs are always great. I would be more open about it. I just dont care to get nagged at. If it shows on paper labs are good, they tend not to yell at you.

Lisa

[KICKSTART]

Yeah makes you feel about 5 years old and asking if you can have sweets just before your tea is ready ! 

[Lillupie]

Lol as I read this whole thing again. I think we see cheating two different ways. I see it as eating something I am not suspose to. I think it has been read in here as lying to my staff about what I eat. THey said that they expect us to cheat here and there. I feel that the best time to eat something "bad". I am able to fix it by the next labs. I dont know this has always worked for me. SO I always look forward to getting my labs. So, I usually follow my diet pretty strict and not eat anything I am not suspose to until the day of my labs and then I celebrate.
Just me.

Lisa

[Riki]

yeah, I'm with Kickstart.  I eat what I want, when I want.  I have a high phosphorus, and I know this, so I limit most stuff with high phosphorus, like milk and dairy, chocolate, dark pop, and whole grains.

My nurses know how long I've been doing this, some of them, longer than they have, actually most of them, longer than they have.  When my labs come back, they ask me if I take my binders, I say yes, and that's the end of it.  They've seen me out in restaurants.  They know how I eat.

You can't quit a centre because of one misunderstanding.  Kickstart has had a lot more crap issues with her centre than anyone I've ever seen.  Things are starting to look up for her, finally.  She hasn't quit her centre, but I'm thinking she may be in the same boat as me, and not have a choice.  One of the nurses in my centre nearly killed me by not following procedure, and due to their policies, I can't even request that she not look after me.  Shit happens, you have to learn to deal with it.

[Marina]

Like  I  said  in  a  previous  reply,  YES  IT'S  TRUE  we  all cheat  at  one  time  or  another,   but  let's  do  it  sensible.    If  we  decide  that  on the  day of   labs  is  a good  day to  cheat  because  everything  will  balance out   in the  next  three  weeks,  think  of  the  internal  damage.
A  new  study  shows  that  people  who  keep  their  phos  in the  mid  3's  live  longer  than those  who  keep  it  in the  mid  to  high  4's.                 
So  in  that  week  or  so  that  it  takes  for  phos  to come  back to  a  somewhat  decent  level  the  phos  is  attaching to your  cardiovascular  system.
If the  nurses  nag  us  about  it  is  for  our  own  good,  just  like our  parents  did,  LOL.   of  course  by   having  outta  whack  labs  we're  not  hurting  our  nurses  nor  Dr  but ourselves.
Just  my  own   .02 cents  worth.

[Lillupie]

Ok, when do YOU cheat? If you do cheat. If I eat pizza, or ice cream on the afternoon of my labs, and that is the only time I do. What is the harm in it? Seriously? Wont it get cleaned out of my system in the next 3 weeks. If i never, ever cheat I am just going to starve myself, because I am going to get sick of eating the same foods that I am allowed to eat. If I ate things in moderation, and I told them I ate pizza, and a grilled cheese sandwich, I dont care to get nagged at. THey will not respect my decision that I know the end results.
Lisa
 

Like  I  said  in  a  previous  reply,  YES  IT'S  TRUE  we  all cheat  at  one  time  or  another,   but  let's  do  it  sensible.    If  we  decide  that  on the  day of   labs  is  a good  day to  cheat  because  everything  will  balance out   in the  next  three  weeks,  think  of  the  internal  damage.
A  new  study  shows  that  people  who  keep  their  phos  in the  mid  3's  live  longer  than those  who  keep  it  in the  mid  to  high  4's.                 
So  in  that  week  or  so  that  it  takes  for  phos  to come  back to  a  somewhat  decent  level  the  phos  is  attaching to your  cardiovascular  system.
If the  nurses  nag  us  about  it  is  for  our  own  good,  just  like our  parents  did,  LOL.   of  course  by   having  outta  whack  labs  we're  not  hurting  our  nurses  nor  Dr  but ourselves.
Just  my  own   .02 cents  worth.