I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Lillupie on October 13, 2011, 07:04:34 AM
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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
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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. :)
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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
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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
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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
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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?
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Marina,
You have to be careful saying "It's a Medicare Rule".
What rule are you citing?
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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.
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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.
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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
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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).
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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....
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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.
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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 (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
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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.
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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.
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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.
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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
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oh THank you so much for this information. You are a lot of help! :cuddle;
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 (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
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[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
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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. :2thumbsup;
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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.)
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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.
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Anna you always give sound advice...thank you!
xo,
R
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My husband is on APD and we get a delivery to the house every 2 months so he can self inject.He is on aranespo 150mg. This gets adjusted as needs be. We are so lucky.
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It's been a long time since I was on EPO, but can't you get it in prefilled syringes? I know that's how Arenesp comes. That way, there's no waste, because you use everything that's in the syringe.
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Also tell Henry Ford you want to get your shots at a facility in Dearborn, maybe one of their satelites.