You know what also pisses me off? Holding Epogen. Ok time for another RANT!!!

[Epoman]

OK a normal person has a hematocrit of 42+ ususally close to almost 50 Well my center likes to hold EPO when peoples crit goes above 38 which is ridiculous. Lets not let people have the same strength as a healthy person lets hold or cut the dose. When they cut my dose my crit drops fast. by a few points within a week or so. So I finally got my doctor to write an order to NEVER cut or totally hold my EPO without first paging him, and he believes in not totally holding the Epogen. So he will just reduce my EPO.

But like always the nurses forget the order and try to hold my EPO and I have to remind them to call the doctor so he can cut it back a little and tell them NOT to hold it.

But it pisses me off that they hold it instead of letting it reach proper levels. And I understand their reasons behind doing it BUT I say it's just so they can save money since most insurance plans won't cover EPO if your crit is above a certain level.

I know I'm lucky that my crit gets that high anyway and I apologize to those who have a low crit even with EPO. But I just wanted to get that off my chest.

[LifeOnHold]

There have been studies showing that a higher hematocrit increases your chance of forming blood clots-- which I know isn't a justification of having people walk around half-dead, but that's what they base their policy on.

[Epoman]

There have been studies showing that a higher hematocrit increases your chance of forming blood clots-- which I know isn't a justification of having people walk around half-dead, but that's what they base their policy on.

Yeah but It's amazing how I feel if my crit goes down a couple of points. I really do feel a difference.

[Naggy6]

I know you posted this some time ago but as I'm new I just saw it today.

I have heard that once your crit goes over a certain number that medicare and insurance co. won't pay for the Epo. I don't know how true that is but I heard one of the nurses in my unit say that to some one.

You know what I hate even more is when your BP is really high and they would give me the epo any way. In a lot of people if your bp is high epo can make it soar. They have it written on my run sheet now that they have to check with me before they give it and it's up to me weather or not I get it.

My bp used to run around 160/110 on a regular basis some times even higher. It didn't seem to make any difference what they did it just would not come down. We tried diet, meds extra dialysis it just wouldn't come down. Then if they gave me epo when it was that high it would jump up extremely high extremely fast 250/150 a few times. I was lucky nothing happened to me.

I went to a new dr. at a diff. hospital she made one med. change and what do you know it came down in no time.

In time it went back up again but not as high as it had been.

Sorry I think I got off topic a little 

[Epoman]

I know you posted this some time ago but as I'm new I just saw it today.

I have heard that once your crit goes over a certain number that medicare and insurance co. won't pay for the Epo. I don't know how true that is but I heard one of the nurses in my unit say that to some one.

You know what I hate even more is when your BP is really high and they would give me the epo any way. In a lot of people if your bp is high epo can make it soar. They have it written on my run sheet now that they have to check with me before they give it and it's up to me weather or not I get it.

My bp used to run around 160/110 on a regular basis some times even higher. It didn't seem to make any difference what they did it just would not come down. We tried diet, meds extra dialysis it just wouldn't come down. Then if they gave me epo when it was that high it would jump up extremely high extremely fast 250/150 a few times. I was lucky nothing happened to me.

I went to a new dr. at a diff. hospital she made one med. change and what do you know it came down in no time.

In time it went back up again but not as high as it had been.

Sorry I think I got off topic a little 

That is absolutely 100% TRUE! At my center 10 years ago my insurance would not cover any EPO if my 'crit was above 32  can you believe that?

[Rerun]

EPO is $100 per unit.  so I get 1,500 units. That is $1,500 per run.  That plus dialysis is $3,000 per run.  That is $10,000 a week to keep me alive.  I wouldn't pay for it either.  For that price, I don't need a crit of 38.  If I had to pay for it, I could live without it like we did 20 years ago.  GEEZ a blood transfusion is cheaper than that.  I cannot believe that we are letting the drug company get away with that crap.  I think we should ALL boycott Epoigen until the price comes down.  My GOD that is extortion.

[Black]

EPO is $100 per unit.  so I get 1,500 units. That is $1,500 per run.  That plus dialysis is $3,000 per run.  That is $10,000 a week to keep me alive.  I wouldn't pay for it either.  For that price, I don't need a crit of 38.  If I had to pay for it, I could live without it like we did 20 years ago.  GEEZ a blood transfusion is cheaper than that.  I cannot believe that we are letting the drug company get away with that crap.  I think we should ALL boycott Epoigen until the price comes down.  My GOD that is extortion.

When my Doc prescribes one of the latest very expensive drugs, I can usually get him to prescribe one of the older generics instead and they seem to work just fine.  What are the alternatives to Epo and how well do they work?

[Rerun]

Normal kidneys produce a protine call erythropoietin that stimulate your bone marrow to produce red blood cells.  EPO is a synthetic protine that stimulates your bone marrow to produce red blood cells.  The only alternative to it is a blood transfusion.  That would be fine for those that are not ever wanting a transplant.  Blood transfusions screw up your antigens.  So, half the center's population or OVER half are elderly who don't even know where they are.  They could have the blood transfusions.  AND you just live with a Hmct of 30 or below.  You adjust.  I'm sorry, but it makes me nuts to see how much money it takes to keep me going.  $40,000 a month if nothing goes wrong.  I honestly wish I would have denied dialysis.  I know I still can, it is just getting up the guts.  If I EVER have to pay more than $5,000 a  year it will probably push me to do it.  BUT, then again, I should pay something to stay alive.  What is the right price for a life.   It only cost $10 a day to keep Terri Schivo alive.  That is what I read the cost of the feeding solution they gave her through her tube.  AND we let her go.  Her Mom and Dad wanted her alive and our judicial system let her die.  AND we are keeping some of these people at my center alive who honest to GOD do not know they are even there or what is happening to them.

This make me nuts thinking about it. 

[Epoman]

Normal kidneys produce a protine call erythropoietin that stimulate your bone marrow to produce red blood cells.  EPO is a synthetic protine that stimulates your bone marrow to produce red blood cells.  The only alternative to it is a blood transfusion.  That would be fine for those that are not ever wanting a transplant.  Blood transfusions screw up your antigens.  So, half the center's population or OVER half are elderly who don't even know where they are.  They could have the blood transfusions.  AND you just live with a Hmct of 30 or below.  You adjust.  I'm sorry, but it makes me nuts to see how much money it takes to keep me going.  $40,000 a month if nothing goes wrong.  I honestly wish I would have denied dialysis.  I know I still can, it is just getting up the guts.  If I EVER have to pay more than $5,000 a  year it will probably push me to do it.  BUT, then again, I should pay something to stay alive.  What is the right price for a life.   It only cost $10 a day to keep Terri Schivo alive.  That is what I read the cost of the feeding solution they gave her through her tube.  AND we let her go.  Her Mom and Dad wanted her alive and our judicial system let her die.  AND we are keeping some of these people at my center alive who honest to GOD do not know they are even there or what is happening to them.

This make me nuts thinking about it. 

Rerun, I have heard you talk this way before and it really bothers me. You are worth EVERY penny it costs to keep you alive. You have worked your whole life and paid taxes, well now you are using benefits that you paid into. Your life is worth millions to keep alive after all you are a human being and there can be no price put on human life. So I don't want to hear you talk like that again. If we can spend literally BILLIONS saving Iraqis from tyranny we can spend many thousands a month to keep you alive. YOU ARE WORTH IT.

- Epoman

[hyperlite]

It only cost $10 a day to keep Terri Schivo alive.  That is what I read the cost of the feeding solution they gave her through her tube.  AND we let her go.  Her Mom and Dad wanted her alive and our judicial system let her die. 

It only cost 10$ a day to keep her heart pumping and her lungs breathing. Our judicial system let her body die. Her brain was already dead. And as Jay Ingram says: "The brain is the seat of the mind"....

[Bajanne]

You know what I hate even more is when your BP is really high and they would give me the epo any way. In a lot of people if your bp is high epo can make it soar. They have it written on my run sheet now that they have to check with me before they give it and it's up to me weather or not I get it.
My bp used to run around 160/110 on a regular basis some times even higher. It didn't seem to make any difference what they did it just would not come down. We tried diet, meds extra dialysis it just wouldn't come down. Then if they gave me epo when it was that high it would jump up extremely high extremely fast 250/150 a few times. I was lucky nothing happened to me.

This is very relevant to me.  Yesterday, my nurses told me that the doctor had raised my Epogen (he told me nothing).
When I finished dialysis my BP was something like 190/125.  I had to stick around while they tried to lower it.  I know see what might have been the cause of that.

[Rerun]

So noted!  But, there are people on dialysis that should not be.  This one poor guy lays there and says "OW, OW, OW"  in between the times he falls asleep (or passes out).  Anyway this should be another post.   

[Panda_9]

I just got my Hb up to 120 and was feeling reasonably well, and then they halved my dose. And as usual it went down again and now hangs around high 90s-100. The thing is, if it goes too high, your blood becomes sticky, and you can get clots. So better to be  a little low, than too high.

[Epoman]

I just got my Hb up to 120 and was feeling reasonably well, and then they halved my dose. And as usual it went down again and now hangs around high 90s-100. The thing is, if it goes too high, your blood becomes sticky, and you can get clots. So better to be  a little low, than too high.

It doesn't become "sticky" it becomes thick with extra red blood cells. However that does not become a problem until your HCT hits the very high 40's close to the 50's.  I personally do not like the rollercoaster of energy levels. There is ONE reason they hold the EPOGEN and that is M-O-N-E-Y BOTTOMLINE.  Years ago, until it was changed recently MEDICARE would not pay if the patients level was higher than 33, that is just WRONG! If a patient is in their 70's fine, but what about patients who have to keep up with their young children (such as myself). I need the DAMN energy. Luckily after I had my parathyroids removed I have maintained a very good HCT 37+ with levels reaching the mid 40's with only needing 3-5,000 units of EPO. (I used to get 28,000 unites 3 times a week and I never went past 34 HCT. I had never felt so much energy. Now a days I have demanded they NEVER HOLD my EPO but they may cut it by 25%-50% but they now know to never hold it. I even go the doctor to sign off on that. 

- Epoman

[kevno]

In the UK we use a different scale for HB mine is near 14 which is to high normal is around 11 - 12. The trouble with high HB is it sticks to the inside of the lines which I use for dialysis. Which lowers the pump speeds then you could clot off, which I have. It is now over one year since I have had epo. I have trouble with low Iron. I have even had a couple circuits of blood taken off, but no difference. My HB needs to come down, You can see how much darker my blood is to other renal patients. Even if they are on a line too. None of the Doctors know why I have kept a high HB. They have come up with the idea I am using the iron to make red blood cells. My Iron was 4.9 should be over 200.

Kevno

[Panda_9]

Sorry Epoman for not using medical terms 

[Epoman]

Sorry Epoman for not using medical terms 

I was just making sure people who saw your post were not misinformed. A high HCT does not cause the blood to become "sticky" it becomes "thick" and I don't believe the word "thick" is a medical term.  If I were using medical terms I would have used the word "Hypercoagulability" which is defined as:

"Thick blood, also known as Hypercoagulability, is a condition where the blood is more viscous than normal." 

- Epoman

[Panda_9]

Sticky/thick/clotty....same diff lol The term "sticky" was actually used by a nurse looking after me 

[BigSky]

They shouldnt hold epo.

Medicare does limit what level hemocrit can be and pay for.  However last thing I read on it from medicare was when hemocrit hits "their" payment target level they will still pay for it if doseage is cut by 25%. 

Another problem is epo patients start to see a jump in clotting issues when it is given with hemoglobin levels of 11-12 and above.

Since last year my unit has done away with epo all together in favor of Aranesp.  Though after reading the inserts it seems it has a higher risk of side affects.

EPO is $100 per unit.  so I get 1,500 units. That is $1,500 per run.  That plus dialysis is $3,000 per run.  That is $10,000 a week to keep me alive.  I wouldn't pay for it either.  For that price, I don't need a crit of 38.  If I had to pay for it, I could live without it like we did 20 years ago.  GEEZ a blood transfusion is cheaper than that.  I cannot believe that we are letting the drug company get away with that crap.  I think we should ALL boycott Epoigen until the price comes down.  My GOD that is extortion.

You might look into Aranesp.  We went from a shot of epo every run to two shots a month with Aranesp.

[Panda_9]

Dose Adjustment

The dose should be adjusted for each patient to achieve and maintain a target hemoglobin not to exceed 12 g/dL.

Increases in dose should not be made more frequently than once a month. If the hemoglobin is increasing and approaching 12 g/dL, the dose should be reduced by approximately 25%. If the hemoglobin continues to increase, doses should be temporarily withheld until the hemoglobin begins to decrease, at which point therapy should be reinitiated at a dose approximately 25% below the previous dose. If the hemoglobin increases by more than 1.0 g/dL in a 2-week period, the dose should be decreased by approximately 25%.

If the increase in hemoglobin is less than 1.0 g/dL over 4 weeks and iron stores are adequate (see PRECAUTIONS: Laboratory Tests), the dose of Aranesp® may be increased by approximately 25% of the previous dose. Further increases may be made at 4-week intervals until the specified hemoglobin is obtained.

[angieskidney]

There have been studies showing that a higher hematocrit increases your chance of forming blood clots-- which I know isn't a justification of having people walk around half-dead, but that's what they base their policy on.

Wow! seriously?? I just read this now but in Canada normal hemoglobin is 120 minimum for women and mine upon last blood work was 121 so I was surprised they have NOT lowered my Eprex yet...  It has been 3 weeks and they still got me on 10,000 CC 3X a week (good thing in Canada it is covered no matter what in dialysis patients) ... no wonder I have to put my Heparin numbers in my machine at 1.5 and 1.5 for 2 1/2 hrs...

Normal kidneys produce a protine call erythropoietin that stimulate your bone marrow to produce red blood cells.  EPO is a synthetic protine that stimulates your bone marrow to produce red blood cells.  The only alternative to it is a blood transfusion.  That would be fine for those that are not ever wanting a transplant.  Blood transfusions screw up your antigens.  So, half the center's population or OVER half are elderly who don't even know where they are.  They could have the blood transfusions.  AND you just live with a Hmct of 30 or below.  You adjust.  I'm sorry, but it makes me nuts to see how much money it takes to keep me going.  $40,000 a month if nothing goes wrong.  I honestly wish I would have denied dialysis.  I know I still can, it is just getting up the guts.  If I EVER have to pay more than $5,000 a  year it will probably push me to do it.  BUT, then again, I should pay something to stay alive.  What is the right price for a life.   It only cost $10 a day to keep Terri Schivo alive.  That is what I read the cost of the feeding solution they gave her through her tube.  AND we let her go.  Her Mom and Dad wanted her alive and our judicial system let her die.  AND we are keeping some of these people at my center alive who honest to GOD do not know they are even there or what is happening to them.

This make me nuts thinking about it. 

Rerun, I have heard you talk this way before and it really bothers me. You are worth EVERY penny it costs to keep you alive. You have worked your whole life and paid taxes, well now you are using benefits that you paid into. Your life is worth millions to keep alive after all you are a human being and there can be no price put on human life. So I don't want to hear you talk like that again. If we can spend literally BILLIONS saving Iraqis from tyranny we can spend many thousands a month to keep you alive. YOU ARE WORTH IT.

- Epoman

You have a seriously good point there Epoman!! I never thought of it that way and want to thank you

Sorry Epoman for not using medical terms 

I was just making sure people who saw your post were not misinformed. A high HCT does not cause the blood to become "sticky" it becomes "thick" and I don't believe the word "thick" is a medical term. If I were using medical terms I would have used the word "Hypercoagulability" which is defined as:

"Thick blood, also known as Hypercoagulability, is a condition where the blood is more viscous than normal."

- Epoman

I just want to thank you for this because even though to some it might seem trivial to use correct terms and I don't mind using "slang" terms as the nurses do .. I do love to see / hear the correct terminology so that I learn Thank you Epoman

They shouldn't hold epo.

Medicare does limit what level hemocrit can be and pay for. However last thing I read on it from medicare was when hemocrit hits "their" payment target level they will still pay for it if doseage is cut by 25%.

Another problem is epo patients start to see a jump in clotting issues when it is given with hemoglobin levels of 11-12 and above.

Since last year my unit has done away with epo all together in favor of Aranesp. Though after reading the inserts it seems it has a higher risk of side affects.

EPO is $100 per unit. so I get 1,500 units. That is $1,500 per run. That plus dialysis is $3,000 per run. That is $10,000 a week to keep me alive. I wouldn't pay for it either. For that price, I don't need a crit of 38. If I had to pay for it, I could live without it like we did 20 years ago. GEEZ a blood transfusion is cheaper than that. I cannot believe that we are letting the drug company get away with that crap. I think we should ALL boycott Epogen until the price comes down. My GOD that is extortion.

You might look into Aranesp. We went from a shot of epo every run to two shots a month with Aranesp.

I wish I could use Aranesp as I was switched to it while on PD since Eprex was not working as well but Aranesp was a dream come true!!! But listen to this: Once I was switched to Hemo they switched me to Eprex (Epo) and I asked why. They said they like to keep all patients in the unit on the same drug to save on ordering more than one.

Nice eh? 

[BigSky]

I wish I could use Aranesp as I was switched to it while on PD since Eprex was not working as well but Aranesp was a dream come true!!! But listen to this: Once I was switched to Hemo they switched me to Eprex (Epo) and I asked why. They said they like to keep all patients in the unit on the same drug to save on ordering more than one.

Nice eh? 

Our unit did something similar but it moved from Epo to Aranesp.   From what the nurses said on it was that the entire hospital and all its facilities (which we are one of) moved soley to Aranesp.   

[angieskidney]

I wish I could use Aranesp as I was switched to it while on PD since Eprex was not working as well but Aranesp was a dream come true!!! But listen to this: Once I was switched to Hemo they switched me to Eprex (Epo) and I asked why. They said they like to keep all patients in the unit on the same drug to save on ordering more than one.

Nice eh? 

Our unit did something similar but it moved from Epo to Aranesp.   From what the nurses said on it was that the entire hospital and all its facilities (which we are one of) moved soley to Aranesp.   

Well I liked Aranesp better as it raised my hemoglobin better, faster, and with less of the drug. I was disappointed when I had to switch from PD to HD and then because the rest of the unit is on Eprex I had to switch back when it doesn't work as well for me. I mean .. they didn't even give me a damn choice I guess if I was paying for it it would be different but since I live in Canada it is paid for .. and what I have learned is .. if it is PAID for .. you get NO choice ...

[sandman]

Well, I can understand the reason behind simplicity but if one drug works better then another, wouldn't it make more sence to use the more effective choice?

What are the side effects of Aranesp?

[BigSky]

Yep it has some side effects.   Havent had any myself though.  Here are some links to compare aranesp and epo side effects.

http://www.webmd.com/drugs/drug-21884-Aranesp+Inj.aspx?drugid=21884&drugname=Aranesp+Inj&pagenumber=6

http://www.webmd.com/drugs/drug-413-Epogen+Inj.aspx?drugid=413&drugname=Epogen+Inj&pagenumber=6