dont know what to do

[Lillupie]

 I have been on PD for the last 3 years. I have a long wait on the transplant due to many antibodies. First of all, as a dialysis patient, do we have a right as a patient to turn down a test that we do not feel beneficial to us??
 Secondly, will you please give me a copy someway, somehow some of CMS rules regarding tests given to dialysis patients, particually PD dialysis.
 To be honest with you, I am a compliant patient. However, I am running into a bump into the road. After being on dialysis for so long I have come to the realization that I will NEVER get any better (without a transplant). I have done numerous KT/Vs. Quite frankly I am sick to my head with them. I feel as though I have a right to say no to a test that i dont feel the need. After I have lost all kidney function and there is not any hope in getting any back, I feel as though after being on this for so long, one, it is rubbing it in my face that I am never going to get any better (e.i better numbers), and I just feel it is overkill by making someone like me do it 4 times a year! If I were a newer patient with a lot of kidney function, then I need to be watched over because once a lose that kidney function (however much is left), then I will need more dialysis to make up for the lost. I have 0 kidney function left! And I will NEVER, EVER going to get it back. No matter what I do and wish for.
 At this point I just dont know what to do. I have been told by the nurses that I HAVE to do this (fill in the blank)****ing  KT/V, by bringing in a sample of my cycler (which is annoying,and a mid- day dialysis) just so that they can get paid. I have asked numerous times to talk to someone about this, someone in CMS, get something that states that dialysis clinics will not get paid unless a KT/V is done. I want hard evidence. If I switch clinics they are going to have the same problem with me. I think it is stupid. They are going to get paid if i do a stupid test! I am NOT getting a cut of that. a few times a year is one thing, but every quarter or every few months is another! I mean come on, especially I am NOT going to get any better (e.i. a KT/V that is 3.0 or higher). Am I going to be put in jail for not doing a test that I think is overdone? Bouced clinic to clinic? Blacklisted?
 
For me to go to hemo, that is NOT an option. I refuse to get a fistula. IT is ugly, and another surgery that causes more antibodies, and my antibodies are already at 71%!

[Restorer]

They need to monitor your Kt/V on PD to make sure you're still getting adequate dialysis. Your peritoneum's ability to dialyze you can degrade over time. If you have Medicare or Medicaid, they require the clinic to take those tests four times a year and submit the results. If you're on private insurance, I don't know, but the dialysis clinic and their company have requirements in order to keep their standards up.

They can refuse to keep you on as a PD patient if you don't follow their requirements. If you absolutely refuse to do that test four times a year, I suppose your only hope is to find a clinic that will yield, but that may be very difficult or impossible. It's like refusing to have imaging tests to see if your cancer is still in remission.

Sorry to be a little harsh here, but the way I see it, doing your own dialysis comes with responsibilities, and being inconvenienced four times a year doesn't seem worth giving it up.

[Lillupie]

I just want proof of that. Something concreate that says that. Thats all. No offense, if it came down to it, I will have to go to hospice, and spend the rest of my days.

[okarol]

Check here and search their website for more info: https://www.cms.gov/apps/QMIS/measure_details.asp?id=204

For me to go to hemo, that is NOT an option. I refuse to get a fistula. IT is ugly, and another surgery that causes more antibodies, and my antibodies are already at 71%!

Fistula surgery does not cause more antibodies....?

[RichardMEL]

yeah I agree. fistula surgery shouldn't create any antibodies, unless you needed a blood transfusion for some reason, and I can't see why you'd need that. Where do you get that idea from?

As for fistulas being ugly. meh. My nose is ugly.. heck my head is ugly. Fistula's least of my worries, and it's the best form of access. It suits me fine.

Besides, one day when I want to push in a line somewhere I might just hold up my arm and cry "disabled! let me through!" 

[monrein]

Lillupie, it sounds to me as though what you're feeling big time right now is the severe loss of control over our lives as we'd like them to be and unfortunately that's part of the territory that comes with any chronic illness. 
Restorer gives a good explanation of the reason for the Kt/v testing being done on a regular basis and it's unfortunate that your clinic hasn't been able to explain this to you in "concrete" terms.  However, you can research this for yourself and if you're doing dialysis anyway, it might as well be clearing toxins as efficiently as possible...the kt/v is the "proof" of that.  To talk about going to hospice seems "stubborn" in the extreme and frankly a little bit ridiculous.  Please don't misunderstand me here.  I totally understand how fed up we can get with all the stuff we must do...I've been at this a very long time too...but I really believe that we need to take back any control we can by understanding why we do what we must and then taking charge of our best health possible by making sure we do it well.  Your goal ought to be for that ky/v reading to be as good as it can because then you'll be getting good quality D which will allow you to feel better and have a better quality of life.  For your clinic NOT to insist on it would mean that your care would be less than optimal.

You are young, you are stronger than you might think you are and I hope you'll get past this.  Hugs to you. 

[RichardMEL]

Good Call Monrein.

My unit does clearance evaluations every 3 months. OK I'm on hemo in centre, so it's trivial for me - they just take bloods before and after the session so it's a minor bit of extra time - not as annoying for you to take the stuff in to your unit, but I think it's in your own best interests to be informed about how you're doing and if there ARE problems then doing these tests could definitely help sort you out sooner than later.

Dialysis and kidney failure puts lots of impositions on us - some of them are not fun - but at least it keeps us going. Heck, PD isn't even an option for me to do so I'm stuck going into the hospital 3 times a week. I'm not complaining about that, I'm just saying.

[romanyscarlett]

Not all fistulas are ugly. I know that in some people they become very enlarged but mine is barely visible. I have a very slight bump on my wrist which is the only giveaway. If you were to see me, unless I pointed it out to you, I doubt you'd notice that I had one.

I was told I could have mine removed when I get a transplant. I've decided not to because given my age, even if a transplanted kidney lasts me 20 years I will undoubtedly need dialysis again.

I'd much rather have a small bump on my arm than have a tube coming out of my stomach as to me PD sounds utterly repulsive!

[Genlando]

Several of the dialysis veterans have already weighed in here, and what they say is true.  The quarterly kt/v tests are a protection for you; they're used as evidence that your PD treatments are effective.

You've already hinted at the underlying cause for your discontent:  it's finally hitting home with you that you're going to be a dialysis patient for the rest of your life--unless you get a transplant. And, that sucks.

I went through a similar episode when I was first diagnosed with ESRD; however, I'm in my fifties, and I've had the opportunity to raise a family and work in a career that I enjoyed for about 30 years.  I now view my ESRD as just an excuse to start an early retirement. On the other hand, I gather that you're in your 20s, so I can't imagine how tough it is for you to have to deal with the changes that you're going through.  Chances are, you're pissed at the world, because it seems so unfair.  You might be angry that all this BS happened to you.  At the same time, you might be jealous of some of your friends, because they're able to enjoy a "normal" life, while you're consigned to the life of a DIALYSIS PATIENT.

If you feel that way, vent your anger, but do it in healthy ways.  I started writing nasty-grams to people.  I wrote angry letters to family members, inconsiderate friends, and even God.  Then I saved them on my hard drive, and never printed or sent them.  I unloaded all my rage, but didn't hurt anybody's feelings.

Once you finally accept that your life has changed (note that's "accept"--not necessarily like the changes), then you can move on.  Get involved in helping other people in your local dialysis community. I don't know about your area, but there are a lot of D patients in my area that don't understand a thing about their disease, or what to do about it.  The people at the HD center tell then to do this or that, and they do it.  However, they don't have any control over their lives, so they don't really know how to take care of themselves.  Make it your goal to help out such people.

If you do start reaching out to other people, something amazing's going to happen:  you'll be so busy helping others that you won't have time worrying about your day-to-day problems; or your problems won't seem too big when compared to the issues some of the people you're helping have.  Either way, life will get better for you. Give it a try!

Sorry about going off-topic, just my 

[KICKSTART]

Im sorry i cant help you about the tests because here in the UK its different. But one thing i feel i must prepare you for, is that at some point you will have to go onto hemo, you wont have a choice. PD does not last forever. I have now done both , my PD lasted for over 5 years and now im on hemo. Im sorry to have to tell you that 

[Lillupie]

Im sorry i cant help you about the tests because here in the UK its different. But one thing i feel i must prepare you for, is that at some point you will have to go onto hemo, you wont have a choice. PD does not last forever. I have now done both , my PD lasted for over 5 years and now im on hemo. Im sorry to have to tell you that 

I am sorry but at that point it would be time for me to say good-bye. I have been on hemo a few times since starting dialysis and I utterly hate it. I would either have to be transplanted or say good-bye. The quality of life on hemo just sucks to me. You cant drink anything, you cant eat anything (well compared to PD), the list goes on and on.

[casper2636]

Lillupie,
What a sad choice to make, but I can understand it. A good dialysis buddy of mine was in the same position as you are. He had done PD and than had to go to Hemo and hated it. On top of that he also had to go to chemo. that only abated his cancer, not erradicated it. He used to sit next to me and was so upbeat. He just couldn't stand the treatment. One day, he just stopped coming. The next week he was gone. Tears come to my eyes when I think of him and the choice you are making. Please, think of you loved ones and the what you will leave behind.
I dread dialysis too, and it makes me depressed, but I love my life too much to say good bye.

[KICKSTART]

Im sorry i cant help you about the tests because here in the UK its different. But one thing i feel i must prepare you for, is that at some point you will have to go onto hemo, you wont have a choice. PD does not last forever. I have now done both , my PD lasted for over 5 years and now im on hemo. Im sorry to have to tell you that 

I am sorry but at that point it would be time for me to say good-bye. I have been on hemo a few times since starting dialysis and I utterly hate it. I would either have to be transplanted or say good-bye. The quality of life on hemo just sucks to me. You cant drink anything, you cant eat anything (well compared to PD), the list goes on and on.

Oh i totally get you believe me ! . I said exactly the same thing myself ! and if you want to see just how hard a time im having check my posts out, but i still keep turning up ! What i dont get from a lot of you ( not just you personally) is this big thing about you cant eat anything or drink anything as compared to pd ? I did pd for all that time AND was on just the same restrictions as i am on ,on hemo. My quality of life sucks (as you put it) to the point of depression and breakdown, but ..tomorrow is another day and who knows what it will bring ? Chopping and changing from pd to hemo is probably not helping you either.

[RightSide]

What i dont get from a lot of you ( not just you personally) is this big thing about you cant eat anything or drink anything as compared to pd ? I did pd for all that time AND was on just the same restrictions as i am on ,on hemo.

It's not the type of dialysis per se; it's the amount of dialysis.

PD makes it easier to do more dialysis per week than in-center HD does.  (in-center HD is typically 3-4 hours, 3 times a week; with PD you can be dialyzing all night.)  And the more dialysis you do, the less restrictive you have to be with your diet/fluid regimen.

[KICKSTART]

Rightside . maybe you misread ? I have done both pd and hemo now and i was on exactly the same fluid/diet regime for both. I wasnt able to drink more on pd nor eat a different diet and yes i did standard pd , 4 exchanges per day manual , then night time cycler for 8 hours.

[pamster42000]

You appear to be a person who wants to be highly invovled in the decesions made in your own health issues. Congratulations!! For some reasons Dr's have a problem with this...but I figure..tough luck. If more people stand up for their rights as a dialysis patient maybe something will be done! . Beings you have high anibodies check out the Cedar-Sinai Hospital at Los Angeles CA.

[bette1]

As Restorer says you have to do the Kt/v test to make sure that your pd dialysis is working correctly.  I too started dialysis young (I was 20) so it was kind of a drag to comply with all the tests and things, but maybe you could ask them which are the most important, and make sure those get done.

Not all fistulas are ugly.  I have a flat one on my upper right arm that just has to buttonhole.  I guess the vein never grew big and bulky because I have fat arms . 

I tried to think of the dialysis stuff as the stuff I had to do in order to be well enough to do what I wanted to do, just like eating, sleeping and showering. 

[RichardMEL]

It's not true (in my view) that you "can't eat anything" or "can't drink anything" on hemo. Yes, there are restrictions, but it's all about moderation I think. I used to drink 3L+ a day and yes, it's a lot to pull that back to 1L or less, but it is do-able. Same with the renal diet - it's all about moderation that I figure. Rather than "can't have this can't have that" I find that balance works really well. ie if I have something that is higher potassium during the day I will go low at night - so over a 24 hour period I'm probably going to even out to about medium. Obviously taking binders is important, as is thinking about things like sodium, and what you're drinking (eg: colas)... but really it's not THAT dire.

Compared to PD (which I have not done) I am sure it seems horrible, but saying you can't eat or drink anything might gives others the wrong idea. IMHO.

Just my two cents anyway.

[Zach]

RichardMEL is correct, it's all about moderation and intelligent food selection.

In fact, those on dialysis need to eat more protein than the average person with working kidneys.
That's eating more beef, chicken, pork, eggs, and fish.

I started hemodialysis when I was 23 years old, just about a year out of college.
Since then I founded a film company and have been going strong ever since.

Information=empowerment=long healthy life.

[Lillupie]

It is just when I was on hemo for a short time, I lost soo much weight because there was so much I was not allowed to eat. After having a summer of 90 degree weather, I just cant see not being able to have the basic essential of water!
Isnt getting a fistula surgery? Surgeries do cause antibodies?


Lisa

[Marina]

Lisa,
I  know what you  mean  it  is  so    annoying  to  have  to  bring  in  dialysate  and urine  samples  4x/yr  (  I  HATE  IT  TOO),  but  think of  it  as  a  benefit  for you.   The  test  was  only  done  3x/yr  until  '09.   What if   the  tests  were  perfomed  but  once  or  twice  per  yr   and  PD  wasn't  working  as  well  as  it  should?   You  wouldn't   know  the   toxins   had   built  up  to  a  unhealthy  level  until  you  got  really  sick.    I  do  think  the  test  is    good  thing.
My  nurse  once  told  me  that  we're  very  lucky    that   dialysis  is  regulated  by  medicare.   No  other  disease is  watched  over  by any  health  organization.

Hope you can see  it  as  a positive thing.   hey you  only  bring  samples  from  your  cycler  and  a  day  exchange.  I  do  manuals.   I  have  so say  all bags  and  then mix  them  in a  container  (the  morning of  the  blood  daw)  and  bring  in  60cc    along  with  an urine  sample.    So  you  have  it  easier  than   me, and  as  much  as  I  hate  to  do  this  collection,  I don't  mind  because  I  want  to  know  if  PD  is  still working  for  me.

! What i dont get from a lot of you ( not just you personally) is this big thing about you cant eat anything or drink anything as compared to pd ?

I've  been on  PD  for  over  6yrs.        I've  never had  any  fluid  restrictions.
I've  pushed  to  eat  more  potassium  because on  PD  you  remove  potassium,  most  HD  patients  are  told to  hold  potassium  foods.
My phos  is  great,  and  I'm allowed  to  eat  some  cheese  (1oz/day)  if I  so choose  to.
But,  like  RichardMel  said,   it's  all  about  moderation.  I  eat  pretty much  everything  I like   in  moderation.  If I  eat high phos  food  at  one  meal, I  tried to  avoid   higher  phos  foods the  rest  of the  day.

[BASSMAN]

I just want proof of that. Something concreate that says that. Thats all. No offense, if it came down to it, I will have to go to hospice, and spend the rest of my days.

I am sorry but at that point it would be time for me to say good-bye. I have been on hemo a few times since starting dialysis and I utterly hate it. I would either have to be transplanted or say good-bye. The quality of life on hemo just sucks to me. You cant drink anything, you cant eat anything (well compared to PD), the list goes on and on.
 I am sorry but at that point it would be time for me to say good-bye. I have been on hemo a few times since starting dialysis and I utterly hate it. I would either have to be transplanted or say good-bye. The quality of life on hemo just sucks to me. You cant drink anything, you cant eat anything (well compared to PD), the list goes on and on.

**********************************************************************************
Do not give up!  I never experienced dialysis.  I understand from what I have read that it is difficult.  Please send a PM to paris.  I believe she had a high PRA and was recently blessed with a kidney out of the blue.  If you were a senior citizen, I would respect your decision, but you are young and beautiful.  Your time will come!!!  Do what ever it take to stay alive until that day does come. 

Watch this video!

http://www.youtube.com/watch?v=Gc4HGQHgeFE

[Restorer]

I haven't been able to find any proof of the Medicare requirements for clinics administering PD, but I've only done internet searches. If you really want that proof, you might have to do some calling around or work with your clinic's social worker or financial coordinator.

As for hemo being limiting, yeah, it can be, but you learn to adapt. I know that's not what you want to hear, and it sounds like the cliched affirmation about chronic diseases, "Oh, you can live a very fulfilling life with these limitations," or "You'll learn to tolerate having only 4 free days a week," but it's really not like that. It sucks losing the ability to define your life down to every last detail, but really, who has that? Everyone has natural limitations thanks the their responsibilities. On hemo, you have more, but they're far from intolerable. I haven't changed my diet much since PD. I'm more careful about potassium (which I had experience with before I went on dialysis), and I watch my fluid intake, but not the point of frustration.

On the bright side, you don't have to deal with hemo now. It seems the only responsibility you're balking at is the Kt/V collection. What exactly is it that you find so problematic (honestly asking)? Is there some way you or your clinic can do it differently to make it easier on you?

Also, I've never heard of surgery in general increasing antibodies. That would only happen if you lost enough blood to require a transfusion, which is unlikely, especially if, as a kidney patient on the transplant list, you specifically ask for no transfusions unless absolutely necessary.

[murphy]

Excellent video Bassman.  We should play that at all our pity parties.

[monrein]

Thanks for posting that Bassman.  I'd seen it before but one can't ever see it too many times.