Epo and Medicare

[KT0930]

Time for another rant  (sorry, kind of long)

I had my monthly lab appointment yesterday, and for the second time in two months got a new log to keep track of my Epo injections. They say that Medicare wants us to keep better track of when we're doing the injections, so they're also telling us when to give the injections. As in, if you take 3x/weekly injections, do them MWF; 2x/week MTh; and 1x/week on Monday. In my opinion, this is just blatant micro-managing of MY life by the government. I'm not normally one who goes off on the government getting too involved in my life, because for the most part they don't, but this just pisses me off!! Let's forget for one second that Monday's are THE WORST day of the week for me to add anything else to my schedule and just focus on the fact that a government agency - that I really don't have a choice about participating in, by the way - is telling me what day of the week works for them. As my husband pointed out, there's probably one of two reasons for this. Either 1) People have been sharing among friends and family members, and then fudging the dates so they don't get caught; or 2) it's easier for the bureaucrat in charge to keep track of. Ok, if it's #1, go after the people who are BREAKING THE LAW! and if it's #2, GET OUT OF MY LIFE!

So Monday's are bad for me because if it's a week my husband works on Monday and Tuesday (every other), then I get up at 4:45, get myself ready for work, get my son up at 5:45, get him ready for school, get him on the bus at 6:40, leave directly from the school bus stop to get to work at 7:45, leave work at 4:45, pick my son up from school at 5:45, take him to basketball practice at the school gym right away until 6:45/7:00 (depending on when the coach lets them out), grab dinner, and be connected to the cycler at 7:30. The refrigerator is down the hall from the cycler, so I can't go get the medicine once I'm on the machine, and I have multi-use vials, so I can't get it then let it sit overnight until I can put it back in because it'll go bad and defeat the damn point of the whole program.

Oh yeah, the nurse told me this then took my blood pressure about 2 minutes later. It was 120/110  Go figure! (It was down to 120/90 by the end of my appointment).

[boxman55]

I don't understand the program (I get my epo on the machine) but, I would continue doing it your way and just log it their way, F... them   Boxman

[KT0930]

That's what I've decided to do.  now they're gonna read this and be watching for my log! *hiding*

[stauffenberg]

I know what you mean about the government and the medical profession micromanaging your life as a dialysis patient.  Even if you lived under the tyranny of Hitler's Germany, at least the state did not tell you how much water you could drink every day, whether you could put salt on your food, or how exhausted you had to be given the public expense of fighting your never-ending anemia!

[BobT1939]

Hitler's Germany very well might have simply burned you in an oven, Stauffenberg, or perhaps performed hideous "medical" experiments on you that would have been worse than anything you've experienced in your life. ESRD is a pain in the ass, no question, but lets not get carried away./bobt

[jbeany]

Yup, I just got new logs and paper work to keep track of all the meds I take with dialysis - the Aranesp, the Hectorol, and even the heparin.  And I've just been informed that the protocol for taking the aranesp has changed -I used to hold it whenever my hemoglobin was over 13, now it gets held when it's at 12.  Mine has been running 11.8, so it's not going to matter much to me, but that sucks for any of the men in clinic who would actually like to have some energy.  I take mine sub-cu, and only once a week, so they haven't tried to tell me what day I should have it on, at least.

[Neo]

The medicare management of EPO is AWFUL!!!! I function much bettter when my blood count is in the 13-14 range and my doc tries to keep it there, however when it gets over 13 medicare can over rule him and completely stop the EPO resulting ina  very sharp drop, they jsut did it to me again and my blood count is 10 and I feel awful..Medicare has a cut off on the amount that you should have your blood count at.Well IM sorry you cant lump every dialysis patient in the same category im in my twenties and I need the extra energy. So yea its a constant struggle with them, and forces me to miss classes in college and stuff when if the doctor was allowed to do his job I would be fine..So Medicare needs to change some of these things and let Dr's be DOCTORS

[kitkatz]

The dialysis clinic whaps me full of epogen, then it gets up to 11 or 12 they put me on a maintenance dose and the hematocrit plummets back down to 10.  Another thing to talk to primary doc about tomorrow.