I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: vcarmody on June 11, 2010, 12:57:19 PM
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Hi, my husband used to get Epogen every treatment when he was doing in center. We came home in Feb and getting him his Epogen has been an ongoing problem for us. He was missing so many doses, that his hemoglobin dropped (not a good thing because he has an open wound on his foot for the last year and a half that we can not get healed). They are now giving him 22,000 units once a week (we go to the center for this). This week they gave him 22,000 units and a second dose also but I am not sure how much they gave him. Now they say he has to come in for Iron Infusions once a week for the next 8 weeks. I want to do his epogen injection and his Iron Infusions at home. Has anyone or does anyone do any of this at home. I know of a company that will come to our home and do iron infusions and I prefer this because my husband really hates going to the center.
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Hi, my husband used to get Epogen every treatment when he was doing in center. We came home in Feb and getting him his Epogen has been an ongoing problem for us. He was missing so many doses, that his hemoglobin dropped (not a good thing because he has an open wound on his foot for the last year and a half that we can not get healed). They are now giving him 22,000 units once a week (we go to the center for this). This week they gave him 22,000 units and a second dose also but I am not sure how much they gave him. Now they say he has to come in for Iron Infusions once a week for the next 8 weeks. I want to do his epogen injection and his Iron Infusions at home. Has anyone or does anyone do any of this at home. I know of a company that will come to our home and do iron infusions and I prefer this because my husband really hates going to the center.
vcarmody,
Many give themselves epo at home on a regular basis. But Iron is a different story. Medicare has strict rules about Iron and it must be given in center. I have known of people giving iron at home, but this is very uncommon. Iron must be given over a certain period of time depending on the amount given. The usual dose is 100 or 200 cc per month.
Do you know what his Iron stores are? There may be other reasons why he may be needing so much epo other than renal failure.
///M3R
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When I have had iron infusions, they have to be monitored carefully when they first start the iv in case their is a reaction. Mine took about 4 hours each time and I am not sure I would be comfortable at home without back up medical care. It all probably will depend on the insurance and what they will cover. I hope you get the answers you need and I hope you husband does ok.
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I did four times of iron infusions at a local hospital with each lasting for two hours. I am doing epo at home. When a patient has enough iron, she or he may need less epo.
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I'm not sure what his Iron stores are. I thought I had the blood work print outs here, but I guess they were left at the center. They are thinking he needs so much Epo because of the open wound on his foot.
They originally wanted to do his infusion over 4 hours at either the local hospital or the center, then they said they could do it over 90 minutes then they called and wanted him to come in today and do it over 15 minutes. I got concerned because I read that if they push it to fast you can have a bad reaction. We have private insurance (BC BS primary and Aetna as secondary). I inquired about doing his Epo at home but was told by the center that insurance companies don't allow that, he really hates going to the center because he is not allowed to put any pressure on his foot due to the graft so he is on crutches and he has no energy at all so using the crutches to get around really wipes him out. I did find a company (Nextron Infusions) that will do his iron infusion at our home, that is why I was wondering if anyone had ever did it at home before, but it sounds like it may be safer to do it at the hospital from what everyone is telling me and I am reading. I'm not sure his center is anymore equipped for an emergency then I would be at home.
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There are a few kinds of iron that the infusion lasts differently. There are 20 minute infusions, and I asked the hospital to do 20 minutes for me, but they only did the iron that needs two hours of infusion.
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Hey V, I give my husband his epo at home 10,000 units 3 x weekly and we also have BC/BS insurance. Never been a problem for us. You might talk to your neph about this as it may be specific to your clinic's policies.
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Epo shots at home are easy to do. The iron is a paperwork nightmare. On home D, I ended up going to the local infusion center for an afternoon, and getting a 4 or 5 hour dose. Still, I wouldn't have traded home D for the ease of getting iron in-center again!
I think the home infusion done by the private company sounds great - but how much will it cost out of pocket?
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looneytunes thanks for letting me know that BC/BS covers it. Our nurse keeps saying we have great insurance and we should be able to do it at home, it seems to be our neph who is dragging his feet about letting us do it at home. I guess I am just gonna have to confront him straight out and ask. I really feel my husband needs to get it at least 3 times a week like he was in center, not once a week or once every two weeks or once a month like they were doing after we went home with our system one. jbeany from what the infusion tech was explaining to me, there is no out of pocket expense with the insurance we have, she was saying it is actually more cost effective for the insurance company to have it done at home we just have to get the approval and a prescription from his neph. He still is up in the air on what is best for him, tomorrow he going to the center to talk with his nurse and see what she thinks is best.
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Vicky call BCBS and see if they cover it, not all plans cover everything, I have BCBS and mine covers it in center. I am shocked Doc wont let you do it at home. We go to the same center.
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Jenn has to get Venofer (Iron) in the center also. I think this is standard. Epo is at home though.
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. I really feel my husband needs to get it at least 3 times a week like he was in center, not once a week or once every two weeks or once a month like they were doing after we went home with our system one.
NxStage is a very different treatment than in-center. DH was getting almost 28,000 3x/week while in-center, after starting NxStage he does fine with 10,000/week. Part of that is that you don't get as toxic with daily treatments, part is that Epogen is much more effective given as a shot than dumped into the machine.
The doses aren't really comparable. Really the only thing to look at to determine whether the dose is correct is hemoglobin level.