CALLING ALL PD PEOPLE.....Anemia, and EPO shots

[Lillupie]

hello,
 Well first I was wondering, if i refuse to take EPO will I get kick off the transplant list??

 Ok here is the sucky situation. Some of you know that I drive my mom to and from work (pretty much in exchange for a place to live, the wear and tear on my car, I do wonder if its worth it).
 Now my 5 year old is now in the first grade. Normal people can take their child or thier child can take the school bus to and from school. Well since I am a taxi driver the school bus comes when I am taking or picking up my mom. So then I have to drive my daughter to school.
 Everyday I drive ms. daisy to work, which is about 30 minutes east of me, then turn around and drive my daughter back to my area (30 minutes west) to school.
 Later I pick up my daughter, Alexandria when she gets out, immedately have to drive back 30-40 minutes east to pick my mom up from school.

 Let me get to my point. I have been on dialysis for 4 years! ok PD for 4 years! Have been giving myself an EPO shot at home since I started dialysis. Now my dialysis center is about 10-15 minutes SE from where my mom works. My mom is willing to take two days off a month for me to get labs, and then go to clinic at another time. Right now without the dialysis center appointments I am driving over 100 miles a day!

New rule! THey say anyone who needs EPO, a small dose has to come into the clinic to get it, no longer are they letting you do it at home. Im sorry I just refuse to drive from Garden City, Mi to Detroit, turn around back to garden City to drop Alex off, turn around again drive 45 minutes back to the part in Detroit just to get a shot, turn around and drive back home, another about 45 minutes. And a few hours when everyone gets off of work and school, drive to Detorit and back again. This will be about atleast 150 miles put on my car. THe driving I do without having to make 3 trips to Detroit, making only two wear me out. I do this 5 days a week. Im drained!
 Once Im in Detorit, dropping off my mother, aka Driving Miss Daisy, Alex, is with me and I have to make sure she gets to school on time! So I cant go to the center then. in the afternoon I have to get Alex first, she gets out a 4pm. My mom gets out at 4:30, and my clinic closes at 4:30. I wont get to my center until about 4:45 after they close (because of rush hour traffic).
Just dont know what to do. I feel like everytime I turn around there is a new freaking rule with my center,a nd they say its all from the government. I do know one thing. EverY CENTER has their own set of rules! and every center wants your money, My center is coming across that their rules come from the government. I give you i think some rules may be true beceause of the bundling, etc. But come on!


What do you think?
Lisa

[Marina]

Can't you  get  your  shot  before  picking up  your  mom  from  work?        I'm  sure your  mom  would  understand  and  would not  mind  mind   waiting  for you  5-15 minutes, while you  stop  to get your  shot.             
As  we  know  Anemia  not  only  causes  fatigue  it  can  affect  every organ  in  our  body ESPECIALLY  the  brain  and the  heart.   

Just a  thought.      

[Lillupie]

I just cant see driving 45 minutes just for a shot that I used to give myself at home. But by the time i get down there my center is closed.

Lisa

[wbdoug]

I don't know about new government rules but my pd nurse called me yeasterdy to come pick up my vile of epogen to be administered at home.
She emails me about any changes in dosage based on my lab results.
So in answer to your question I don't think it is a new government rule but rather a new rule from your center.

Bill

[Meinuk]

Lisa, if your center has a new policy and they will not be flexible with you, call your Patient Services Coordinator at your ESRD Network, and ask then to advocate for you.  Explain the hardship and that it had been working for four years.  Having this added burden is affecting your quality of life.

http://www.esrdnet11.org/consumer/rights.asp

Renal Network of the Upper Midwest, Inc.
1360 Energy Park Drive, Suite 200
Saint Paul, Minnesota 55108
(651) 644-9877 telephone
(800) 973-3773 for patients

[Marina]

Lisa, if your center has a new policy and they will not be flexible with you, call your Patient Services Coordinator at your ESRD Network, and ask then to advocate for you.  Explain the hardship and that it had been working for four years.  Having this added burden is affecting your quality of life.

http://www.esrdnet11.org/consumer/rights.asp

Renal Network of the Upper Midwest, Inc.
1360 Energy Park Drive, Suite 200
Saint Paul, Minnesota 55108
(651) 644-9877 telephone
(800) 973-3773 for patients

It's  a  Medicare  rule.           


@ Lisa,   can't you  take your  daughter out of  school  15 minutes  earlier  so you  can  go  get your  shot?

[Meinuk]

Marina,

You have to be careful saying "It's a Medicare Rule".

What rule are you citing?

[Desert Dancer]

It's  a  Medicare  rule.           

Uh, then it must be a rule issued like, yesterday. I've gotten no such directive from my center. It would be absolute chaos if every one of their patients had to come in three times a week for EPO. I do mine at home.

Lisa, I think they're just telling you it's a 'government' rule so you can't argue with it. I'd definitely contact your Network over this; it would be a real hardship for anyone, I think.

[Marina]

It's  a  Medicare  rule.           

Uh, then it must be a rule issued like, yesterday. I've gotten no such directive from my center. It would be absolute chaos if every one of their patients had to come in three times a week for EPO. I do mine at home.

My  former  unit  told  me  this.  My  brother  also has  to  go  in  to  get his  shots.

Some  centers,  maybe yours  is  not  going  by  the  rules.     

[Lillupie]

Marina,
 Didnt you get a transplant?? How long ago did you have to start going to the center for EPO? Beceause this is  new to me.

Lisa

[Marina]

Marina,
 Didnt you get a transplant?? How long ago did you have to start going to the center for EPO? Beceause this is  new to me.

Lisa

Lisa,

I  was  blessed  with  a  Transplant   Nov  2010.

I  had  to  go   get  my aranesp   shot  for the  last    the  last  8 months  on PD  (maybe  longer).

[tyefly]

I dont believe its a medicare rule  Marina....  just because YOUR  center told you that makes it so.....my center allows everyone to take their EPO home.....  we usually pick up a months supply when we go to clinic.... 

Maybe your unit isnt following the rules....or maybe they are making their own rules up..... I cant believe it medicare had a rule like this that there would be so many clinics who would be letting so many do this at home....

and then again  who knows......  would love to see the rule..... I am transplant too and I am doing Epo at home....but now I get my epo thru my insurance.....thru a precription....

[cariad]

I dont believe its a medicare rule  Marina....  just because YOUR  center told you that makes it so.....my center allows everyone to take their EPO home.....  we usually pick up a months supply when we go to clinic.... 

Maybe your unit isnt following the rules....or maybe they are making their own rules up..... I cant believe it medicare had a rule like this that there would be so many clinics who would be letting so many do this at home....

and then again  who knows......  would love to see the rule..... I am transplant too and I am doing Epo at home....but now I get my epo thru my insurance.....thru a precription....

I agree with this. I personally would demand to see the rule, then IF it exists, demand that an exception be made. What a waste. And personally, I would NEVER take my child out of school early. It's their education! There are 'rules' about that, too. (Though I think the word 'law' would be more appropriate for that.)

I've driven Detroit traffic (though I try to block it out of my mind) and it is almost as difficult as LA to gauge timing. What happens on those (numerous) days when something goes wrong and it takes you much longer than expected? That is your health on the line. I would call the network.

I gave myself Aranesp until they did away with the SureClick. Then I had my nephrologist administer it for me, and when I moved, I went to my GP less than a mile away. Everyone wanted me to let my husband learn how to do it, but I said no. Never was it suggested that I HAD to have a professional administer it, that was just my choice.

[Meinuk]

So many times, people will say that something is "The Rule".  Sometimes it is a rule, sometimes it isn't, other times it is an "interpretation". Everything can be fact checked.  (and sadly, most of the time, should be)

Here are direct links to some ammunition: 

The Medicare Conditions for Coverage for Dialysis Facilities (CfC's aka - the RULES)
http://www.cms.gov/CFCsAndCoPs/downloads/ESRDfinalrule0415.pdf


And this is the Interpretive Guidance, which is written in real words discussing the CfC's for State Surveyors (the Inspectors):

ESRD Program Interpretive Guidance - Version 1.1 October 3, 2008 (PDF, 1.45 MB)
http://www.cms.gov/GuidanceforLawsAndRegulations/downloads/esrdpgmguidance.pdf


Both of these are public record, and can be found (along with a lot of other information):

The CfC is in the CMS End Stage Renal Disease (ESRD) Center
http://www.cms.gov/center/esrd.asp?

And the Intrepretive guide is listed in Survey & Certification - Guidance To Laws & Regulations - dialysis
http://www.cms.gov/GuidanceforLawsAndRegulations/05_Dialysis.asp

[pitagory]

As of about 1 month ago I am not on epo but my nurse at the davita center told me the same thing that they wanted to do the epo shots in center,
he said its something new. I did my shots at home when I did them.

[msrosefromms]

I switched clinics six months ago to a r=Reliant clinic. I used to give myself my EPO, but now have to go the clinic for them to give me my EPO. I think they are able to buy larger containers of the EPO for Less money and still bill the same amount.

[jeannea]

To answer your original question, you can be kicked off the transplant list for not doing whatever your transplant center says you have to do. I don't know how your center feels about the epo question. But there are a lot of things they get to choose how you're supposed to take care of yourself. I know it's not fair.

[Riki]

To answer your original question, you can be kicked off the transplant list for not doing whatever your transplant center says you have to do. I don't know how your center feels about the epo question. But there are a lot of things they get to choose how you're supposed to take care of yourself. I know it's not fair.

Yep.. Non-compliance is non-compliance... damn, how I hate that word.  I missed a clinic visit because of a major snowstorm. At the time, the clinic was 4 hours away in a different province.  They told me that missing that clinic was non-compliance..... And they wonder why I think they are actively trying to keep me from getting another kidney

[Lillupie]

oh THank you so much for this information. You are a lot of help! 

Lisa

So many times, people will say that something is "The Rule".  Sometimes it is a rule, sometimes it isn't, other times it is an "interpretation". Everything can be fact checked.  (and sadly, most of the time, should be)

Here are direct links to some ammunition: 

The Medicare Conditions for Coverage for Dialysis Facilities (CfC's aka - the RULES)
http://www.cms.gov/CFCsAndCoPs/downloads/ESRDfinalrule0415.pdf


And this is the Interpretive Guidance, which is written in real words discussing the CfC's for State Surveyors (the Inspectors):

ESRD Program Interpretive Guidance - Version 1.1 October 3, 2008 (PDF, 1.45 MB)
http://www.cms.gov/GuidanceforLawsAndRegulations/downloads/esrdpgmguidance.pdf


Both of these are public record, and can be found (along with a lot of other information):

The CfC is in the CMS End Stage Renal Disease (ESRD) Center
http://www.cms.gov/center/esrd.asp?

And the Intrepretive guide is listed in Survey & Certification - Guidance To Laws & Regulations - dialysis
http://www.cms.gov/GuidanceforLawsAndRegulations/05_Dialysis.asp

[Lillupie]

[I  was  blessed  with  a  Transplant   Nov  2010.

I  had  to  go   get  my aranesp   shot  for the  last    the  last  8 months  on PD  (maybe  longer).

Marina,
 Let me explain. You dont need aranesp no where near what you need if you get EPO. Aranesp is stronger then EPO, and you are right it is every 3 weeks with that.

ok in 2007 I started PD dialysis at Henry Ford dialysis (you know the guy who started the car). THey used aranesp, and you had to get that every three weeks.
 When I went to Davita Motorcity, they used EPO only, and that was done once a week. And once I switched over to Davita, they told me I had to give myself the EPO at home. So I got used to that. Now after 4 years they are going to tell me different. They're exact words were "if you are on a low dose of EPO you have to come in every two weeks. Only those who need the higher dose get to take it home". Get it.
 Oh and thanks for asking about my book. I have to save up to get it published. It has over 175 pages in it.

Lisa

[Marina]

Actually  the  need  for   aranesp  varies  from  patient to patient.
We  tried  every  possible  dose  and  the  frequency  I  needed.
I  did  better  with   25mcg  every  2 weeks.

Aranesp  is  not  necessarily stronger,  it's  just  released  slower  than  EPO.
So  aranesp  remains in  our  system  longer than   EPO.

When  my  center  administered  EPO,  I  had to  do  it  1-2x/week.


I'm  so  looking  forward to  your  very  informative  book.       

[natnnnat]

Gregory has an aranesp shot every week on a Wednesday.  6micrograms.  I give it to him.  I like doing it, its interesting.  I got good instructions from here (e.g. HarryHenry Blackbottom Snicklesnorter, and by the way, where has that gentleman gone?  Still off bushbashing in his ute?)(Having asked myself this question, i find Henry that you have had all manner of stupid adventures.  Better move the rest of my comments to your messages describing same.)

[Henry P Snicklesnorter]

.

[fearless]

I agree with the person who suggested that maybe the clinic is trying to save $ by dosing patients themselves.  Epogen is VERY expensive.  The clinics are reimbursed based on the prescription given to the patient, NOT based on the actual amount of the drug they buy.  If they send home a vial with every patient, and each vial is only good for 4 weeks, and the patient can't extract every drop or make their shots perfectly use up the drug, then there are lots of $ wasted.  So, if they have the patient come in, they can administer the drug and ensure there's no wastage.  They can use one vial for multiple doses for a number of patients.

But i have found that in these sorts of situations if I make a good case of why that would impair my ability to keep up good self-treatment (which would be the case if you can't physically get to the clinic for the shot) perhaps they will make an exception for you?  I hope so.

[rsudock]

Anna you always give sound advice...thank you!

xo,
R