Iron and EPO

[tyefly]

  Well now that I am training nxstage....  I found out that I cannot get iron or epo and give it to me while I am dialysis..... like we did when in center......  we are suppose to be able to do IV drugs......  so whats the heparin deal......ok.....    they said that I would have to start doing the self shot thing with the epo.... said to just take oral iron if If that didnt work then I could come in they could give me oral iron every week...  I am thinking  that is not what  I want to do is come in to the clinic every week.... I may as well be incenter.....  I have been training for three weeks now...  and I have not had any iron or epo  and plus I was on vit d Iv stuff  senipar or somthing like that  while I was in clinic..... these guys  just dont want to do this stuff.....  they use to give that to me every session while I was in center.....   now nothing....   I keep asking about it and they keep telling me that they will look at my labs and let me know when and if I need some.....  such a big difference between centers....  So   the question I have is   what do you guys with nxstage do for iron and epo and that vit D stuff..sensipar....

[Zog]

We keep Epo in our refrigerator and give shots at home.
Jenn takes oral Sensipar and Iron when she needs it.
Sometimes she will have to go incenter for venofer (IV iron) if her labs say it is very low.
She has had to go incenter for IV antibiotics following a catheter infection.
Other than that we stay home.
I think you may have less drugs to take once you have adjusted to short daily.

[jbeany]

It's not that you aren't capable of doing the iron on the machine - it's that no one will pay for it if you do.  Epo shots are easy to do at home.  Instead of going to the clinic every week, ask about going to your local infusion center and getting the whole dose of iron at once.  It's a pain in the rear, because it takes all day to get the whole dose in a slow drip, but it does last a really long time for most people.  I found that I did so much better on nxstage that I needed iron much less frequently.  (I couldn't take it orally at all - my stomach couldn't handle it.)  In a year and a half on nxstage, I think I only did a transfusion once.  One day out of a whole year was well worth it!

I did Hectorol - the vit d stuff, on the nxstage.  It is possible, and it worked well - you just have to fuss at them until they let you.  I had to fax in my med list to the clinic every week, giving them a rundown of what I had taken and what day so they could bill it correctly.  Or, like Zog says, try the sensipar - it's a pill.

[HubbysPartner]

Wow, our center gives us EPO, venofer and zemplar to give during treatment through the medicine port on the dialyzer.  Hubby is off EPO and venofer at the moment because his hemoglobin and iron levels are high enough, but we are usually given the supply of meds needed for the month. 

[willowtreewren]

Carl rarely needs Epo, but when he does, we do the shots at home. Tiny needle - doesn't hurt.

When he needs Venifer, he gets an IV during our monthly clinic visit. Sometimes a second visit during the month. He takes Hectorol AND Sensipar by pill.

[willowtreewren]

Marge, I want to come to YOUR clinic! 

[HubbysPartner]

Oh, Aleta, I think that's about the only really great thing about our center.  We're not too fond of the nurses and it just seems like a rinky dink operation.  It is an independent for profit center and it seems like they keep barely enough stuff to supply the patients.  We frequently can't get enough of what we need and we have to supplement ourselves.  The person who was supposed to be our trainer was good, but we only had him for training a few days.  There were too many people training and they were all telling us something different.  We actually got sent home to finish training early because we were getting so frustrated.  I just see some questionable practices.  We are biding our time to transfer to the center that will be run by Lou's neph when he gets it worked out.  We hope to be there early in March.  Much nicer, one visit every month and everything delivered to our house.   

[willowtreewren]

I guess the are positives and negatives with every clinic.