rant about this new hemoglobin protocall!

[sullidog]

Just ranting about the new hemoglobin protocall, I hate it! Before the protocall changes I had a whole lot of energy, and now I get tired easily! Yes I do get sperts of energy but not like I did before they changed this crap!
My hb is now at a 9.6, and if it weren't for the protocall it would not be dropping as fast as it did! It went from a 1.6 which is what they consider normal, but personally I don't, and next week dropped to a 9.6, I don't notice any bleeding so not sure about the drop there. Anyways I find I function with my hemoglobin at an 11 or above, but a 10? no way!
I also work full time and find I'm tired a lot, but again before the protocall change, I was fine!
I hope whoever is making these protocalls have a relative that goes on dialysis and they can see what we are going through!
I even take vitamins but again with the new protocall they don't do squat for me!

[mamagemini]

Hang in there!

[MightyMike]

The government will tell you it's for safety reasons but we know the real reason is the bundling trying to save money so they are giving just enough to keep us alive not realizing that healthier patients with more energy are able to work.  Which would have less people on SSDI and contributing back to the economy but you know how it is every time the economy takes a dip they want to always take more money away from Medicare and social security.

[wvgirl]

Well, I didn't know about this but now I do know why mine was stopped and dropped also. I too seem to feel fine as long as I am over 11, but when I drop below that I feel horrible. My doctor says 10.3 is good. Good for who? Not me!!

[kiddogal]

My husband is still pretty new to dialysis (been on it for 6 months).  Can you explain a little more about this new "protocal"?  What are they doing or not doing?  Are they trying to keep youy just above 10.0?  are they not given the patients what they should have?  Thanks for any more information you can shed on this.

[jbeany]

In a nutshell, Medicare changed how they reimbursed for epo injections, and made rules that they wouldn't pay for injections above certain hemoglobin levels (12) for D patients.  Not only did it force lower hemoglobin levels for patients, but it took the decision about the risks of higher hemoglobin away from the patients and the doctors. 

Here's a few things to look into:

Articles:

http://ihatedialysis.com/forum/index.php?topic=19643.msg333123#msg333123

http://ihatedialysis.com/forum/index.php?topic=10822.msg183495#msg183495

Some patient discussion of the results:

http://ihatedialysis.com/forum/index.php?topic=27444.0

http://ihatedialysis.com/forum/index.php?topic=26118.msg421029#msg421029

Things that might be changing....  http://ihatedialysis.com/forum/index.php?topic=24888.msg401204#msg401204

[sullidog]

I wonder since I also have private insurance if they can slightly raise my target, a long with any patients with private insurance.

[Lillupie]

I wonder since I also have private insurance if they can slightly raise my target, a long with any patients with private insurance.

I know what you mean. I too feel it. I used to be able to give myself the EPO at home, and now they make me do it in the center. I like the split the dose of EPO so Im not crashing. But now they cant afford for me to take mine home.

I have other insurance too. I got the feeling that they will not give us the EPO we need though our other insurance because that is not fair to those who do not have the better insurance.

Lisa

[Joe]

Not sure what the deal is there Lillupie, I still do mt EPO at home. They just sent me another 7 vials, I have more than I will use in several months. My hemoglobin number at labs at his month was 14, so they had me hold my injection this week and I'm on my way in to have an H&H done today to see what to do going forward. They don't want me to stop completely because I drop too fast. Hope we can get this balanced out soon.