CKD and Anemia

[Zach]

20 years ago we rinsed back all our red blood cells from the lines.  Now they throw away the lines and they are red.  There is a LOT of wast that goes on.  Epogen could be cut down a lot if we would save the red blood cells we have.

That's a good point.

Another way to save on EPO usage is to always keep it refrigerated!       

When EPO first came out in the early 90s, we all followed Amgen's instructions about refrigeration. If you traveled with it, even for just a couple of hours, you were supposed to keep it in a cooler, or if you were in an airplane, give to the flight attendant to keep in the frig.

Now it seems that it is left out of the refrigerator for hours.  In my travels, I've  seen it left on the dialysis machine while the patient dialyzes.  Anyone else have observations?

[Dr. Evil]

Well, we can cut down on epo usage...give it sub-q, not IV.  The dose lasts longer and you wont need as much to get the hgb up.  However, it hurts (stings).  So, are you willing to undergo more pain or discomfort just to save medicare a few $? 

...be careful what you ask for.....you just may get it!

[angieskidney]

20 years ago we rinsed back all our red blood cells from the lines.  Now they throw away the lines and they are red.  There is a LOT of wast that goes on.  Epogen could be cut down a lot if we would save the red blood cells we have.

What? My unit rinses back .. they give me back as much blood as possible until the air detector detects air. Then they say "okay you are done" and I clamp the lines.

[Rerun]

AIR? OMG!  No, they rinse back with saline until the lines are pink.  I make them do it until they are clear and I have to add about .8 from the beginning of dialysis for the fluid I want off.  I also make them "dump" the prime.  There is no reason to pump all that saline in me at the beginning just to take it off.  I have enough fluid problems.

Dr. Evil, Yeah, I'll continue taking it in my lines because it does hurt like hell.  I took Procrit for years once every two weeks and would break out in a sweat after the shot.      But, it would save My insurance, and Medicare more than a "few dollars."  Those greedy bastards who make Epogen should be convicted of Extortion!  I'm glad they didn't find the cure for Polio!!  And don't give me that "research" crap.  They could find a wonderful drug like Epogen and still make it affordable.

[BigSky]

That's a good point.

Another way to save on EPO usage is to always keep it refrigerated!       

When EPO first came out in the early 90s, we all followed Amgen's instructions about refrigeration. If you traveled with it, even for just a couple of hours, you were supposed to keep it in a cooler, or if you were in an airplane, give to the flight attendant to keep in the frig.

Now it seems that it is left out of the refrigerator for hours.  In my travels, I've  seen it left on the dialysis machine while the patient dialyzes.  Anyone else have observations?

Here they gave it sub-q.  Now they do the same with Aranesp.

As to leaving it out, from what I was told is that by letting it warm up a little it helps with the pain that can be caused when its given sub-q.   Myself, epo never bothered me.  However with Aranesp warm or not it burns most of time when injected.

Here they use to let the blood push out most of the saline out before connecting the venous line at the start of dialysis.  Done so that less saline was given to the patient.  However now they connect us up and add .6  to be removed to cover saline from the start of dialysis and what saline is used to clear the lines at the end.

[Zach]

Well, we can cut down on epo usage...give it sub-q, not IV.  The dose lasts longer and you wont need as much to get the hgb up.  However, it hurts (stings).  So, are you willing to undergo more pain or discomfort just to save medicare a few $? 

...be careful what you ask for.....you just may get it!

That's the point, it's not just a few $. At about $10.00 per 1,000 units, it's been the single highest per treatment cost added to the Medicare ESRD Reimbursement program -- since patients receive it on the most part every dialysis treatment, except when their hgb is too high.

Patients in the 1990s received doses of about 4,000 units per treatment.  Today it's not uncommon to find patients receiving 12,000 units per treatment.  Yes, I know the hgb goal has been raised since the "old days."     

And as patients we need to ask ourselves, "Do we owe it to the taxpayers to make sure there is limited waste?"

If we advocate for anything, it might be that.     

Receiving EPO sub-q instead of IV is the way a majority of European dialysis units prescribe it.  Receiving it sub-q also keeps the hemoglobin level more stable.  And as you said, it has several advantages, not the least of which is saving money ... but then the Center would make less money, too.

For more on the tales of this issue, please go to the general discussion thread:  Myths vs. Reality: The True Story of Medicare ESRD Reimbursement

[Zach]

Here they gave it sub-q.  Now they do the same with Aranesp.

As to leaving it out, from what I was told is that by letting it warm up a little it helps with the pain that can be caused when its given sub-q.   Myself, epo never bothered me.  However with Aranesp warm or not it burns most of time when injected.

I'm just concerned that if EPO is allowed to "warm up a little" it also becomes less potent, which leads to increase doses.

[angieskidney]

I was told that it can be warmed a little by normal hand warming for a minute. But before this it should be kept in the refrigerator. I used to have to give Aranesp to myself sub-q when I was on PD. I did Eprex (Epo) before that.

[Zach]

I was told that it can be warmed a little by normal hand warming for a minute. But before this it should be kept in the refrigerator. I used to have to give Aranesp to myself sub-q when I was on PD. I did Eprex (Epo) before that.

What you say makes a lot of sense!

[BigSky]

And as patients we need to ask ourselves, "Do we owe it to the taxpayers to make sure there is limited waste?"

If we advocate for anything, it might be that.     

That is a very dark deep hole to jump into though.

Could not an argument then be made that all patient should be on "reuse" dializers since they are more cost efficient?

[Zach]

That is a very dark deep hole to jump into though.

Could not an argument then be made that all patient should be on "reuse" dializers since they are more cost efficient?

Yes.  There will always be those who will make up arguments which may be to the detriment of dialysis patients.  Reuse may have been one of them.

What I'm talking about is waste, fraud and abuse.  Should a patient receive more EPO (or for that matter, IV IRON) when a smaller dose is all that is needed?  As you stated, your Unit gave EPO sub-q, and now they do the same with Aranesp."  That's what I'm talking about.

I just think we as patients need to be more aware of what's being done to us, what the cost is, and be observant of things around us.  It's not as if I expect patients to go to Congress and testify.       

We should really take this to the general discussion thread:  Myths vs. Reality: The True Story of Medicare ESRD
Reimbursement.    http://ihatedialysis.com/forum/index.php?topic=1102.msg12960#msg12960

[BigSky]

Yes.  There will always be those who will make up arguments which may be to the detriment of dialysis patients.  Reuse may have been one of them.

What I'm talking about is waste, fraud and abuse.  Should a patient receive more EPO (or for that matter, IV IRON) when a smaller dose is all that is needed?

Yes but I do believe Epogen is suppose to be brought to room temp before given as an injection.  My understanding is that is it only suppose to be kept cold when storing and is not to be shaken or put in direct sunlight.

[Zach]

Yes but I do beleive Epogen is suppose to be brought to room temp before given as an injection.  My understanding is that is it only suppose to be kept cold when storing and is not to be shaken or put in direct sunlight.

That sounds reasonable.

[Black]

Has anyone used IV L-carnitine (Carnitor) for anemia?  It has several medical uses, and one is for EPO resistant anemia.

I thought of this thread today when I saw a "Dr. Manny" on FNC doing an interview.  One of the questions he was asked was by a mother concerned about her teenage son taking carnitine to help him build muscle.  His answer was reassuring as he basically said as far as he knows there is no known harmful side effect and that it is good for people working to build lean muscle.  He went into detail as to how it works and why, and said that it contains amino acids which naturally occur in the body.

If it would help cut the need for EPO, why not use it?  If my husband has a problem w/ anemia I'll certainly tell his Neph about it.  Thanks again, Zach.

[Zach]

The general population can take the oral version without any problem.

But the oral version of L-carnitine is not recommended for dialysis patients, because of a buildup of toxins that sit in your body until dialysis.  The IV version is best for dialysis patients.

[Black]

The general population can take the oral version without any problem.

But the oral version of L-carnitine is not recommended for dialysis patients, because of a buildup of toxins that sit in your body until dialysis.  The IV version is best for dialysis patients.

Thanks, Zach, I have soooo much to learn!

[Shades_Elfen]

Now this is something that does interest me....

even before my kidneys failed i was anaemic (I think, have to ask Python about that one...).   *EDIT* apparently when i was really young i had nice rosy cheeks and that, but as i got older and my kidneys went downhill... well, you get the picture.

with Epo (which i was really bad at taking when i was younger as i had and still have a phobia of needles but i have managed to overcome that... mostly), I was able to get my hemoglobin (sp?)  up to the 10+ (my consultant and PD nurses were happy with that) however, i was still as white as a sheet most of the time, now usually i have a pale look to me anyway, but there is a difference between looking pale, and looking anaemic.

now, thanks to my latest stay in hospital (nil by mouth for 4 or 5 days, not moving due to pain then being sent home, only to have to go back a day later and be put on a nil by mouth again and then having a Op to remove my PD cath and appendix on top of that...) , my hemoglobin is now at the low 7 point something  (i think its .3 or .4) and they want to give me a blood transfusion to boost my levels up... so that will be done when i next go in (on tuesday) for hemodialysis.

and I'm only just beginning to eat properly in smaller amounts then I'm used to...

 - Shades

[MattyBoy100]

Hi Shades,

when I was first diagnosed with Alports I spent all night in Intensive care having blood transfused and having a blood sample taken out of my hand every 30 mins.  I don`t know how close I was to not being here at all but the nurse later told me she didn`t think I was going to make it!!!  Anyway, I was very anemic as well and as soon as I sat down I fell asleep instantly.  I just had no energy or will to do anything.  It`s not a nice feeling.  I hope you can get your blood levels up quickly.

[Shades_Elfen]

I wish i could say my ESRF was noticed in advance... but if you want details of that time you'd best ask Python, I was basically dead to the world at the time, in and out of consciousness etc...

Python, can you give a detailed account of what happened? I'd be interested to hear what people here have to say about it (and that doctor...)

[angieskidney]

I really wish my mom would sign up and tell about my health. You are lucky When I was younger I don't remember most of it. But my mom is mainly busy with work and her Incredimail

I was lucky though I didn't have problems with my hempgloin until after my transplant failed .. but I think that was mainly because I had one of my original kidneys while I was on PD until I got a transplant

I hated the needles as well so a nurse came and gave them to me .. but she said I had no choice but to learn to be able to do them myself

[Zach]

Because my kidneys have developed cysts during the last 10 years on dialysis, I don't need to take EPO ... my kidneys produce it on their own.

Sometimes my hematocrit goes too high (42%+) so we dump the blood at the end of treatment instead of returning it.  We replace the blood volume with 400 cc of saline.

Clotting, both the dialyzer and AV fistula, is always a concern now.

[kevno]

Not had Epo since March 2005 then I only had it because I lowered my HB because of a operation. Plus I was on the lowest does, only once a month. But my Iron is always low. Should be here in the UK 400+ mine is usually just above 100. That's after they give me iron on the machine 10 times a month. The only trouble with my HB being high is the blood is thicker, but I am on lines for haemo. Which is slowly clogging the lines up. Keep having TPA but can not have that forever. once again COST. Forgot HB 15 Normal around 12, but with lines preferred 10 - 11.

[Zach]

 

For my friend, Hurlock.

[Rerun]

 

[gregory]

I have been receiving carnitor, it has helped a lot. I found out my unit will not be giving it after the 1st. of the year. The manufacturer informed me it will still be part of the new bundling of medicare costs. I E-Mailed Davita twice asking about this, never got a responce.