I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: Black on August 13, 2006, 08:02:44 PM

Title: CKD and Anemia
Post by: Black on August 13, 2006, 08:02:44 PM
I just read a terrific presentation by a Neph, w/ great credentials, on the awful statistics on anemia in CKD.  The percentage of patients coming for their first Neph appointment is around 60%, and it continues to go up while being treated by Nephrologists to around 80%.  The stats show that anemia continues to be a problem and directly correlates to hospitalizations, cardiac complications, strokes, and death.

The Doc really laid it on the line and let the Nephs know they are failing their patients.  This is a link to the entire presentation but the site requires registration in order to access.
http://www.hdcn.com/symp/06rpasat/per/flash/flash_perp.htm

I thought it was really cool that the last slide in the presentation had a quote from Charles Shultz and right below it a quote from the Doc who gave the presentation.

"God put us on earth to achieve a limited number of goals. Right now, we are so far behind that we cannot die."  Charles Schultz

"God put us on earth to achieve a limited numbers of goals. Right now, we are so far behind that we as nephrologists cannot die"
Brian J. G. Pereira, MD

Can you imagine having a Neph that cool?
Title: Re: CKD and Anemia
Post by: Rerun on August 13, 2006, 10:31:45 PM
I didn't read the article, because I didn't want to register, but it is not "breaking news" that kidney patients are Anemic.  Infact, when I was on dialysis a long time ago we had regular blood transfusions when we got low on red blood cells.  Now, with Epogen it is not a problem.  OR... less of a problem.
Title: Re: CKD and Anemia
Post by: Zach on August 14, 2006, 06:37:13 AM
Ah, the good old days.  I remember them well!    :)
Title: Re: CKD and Anemia
Post by: Black on August 14, 2006, 07:40:49 AM
I didn't read the article, because I didn't want to register, but it is not "breaking news" that kidney patients are Anemic.  In fact, when I was on dialysis a long time ago we had regular blood transfusions when we got low on red blood cells.  Now, with Epogen it is not a problem.  OR... less of a problem.

Yeah, I know for all of you who have been dealing with CKD/dialysis for a while were probably well aware of the problems w/ anemia.  I'm so new at all of this and I still have so much to learn.  :-[  But, having a nephrologist stand up at a meeting, in front of other nephrologists, and present the black and white proof that they are doing an absolutely terrible job, to me, was notable :o -- especially that last quote.  8)

I almost feel sorry for the Neph that will be treating my husband while he is on dialysis.  Until I know I can trust him to take good care of my husband, I'll be a real irritant and second guess everything.  Even after he proves he's concerned and conscientious, I'll still be monitoring everything he should be doing for my husband.  Of course, y'all will be getting the play-by-play. ;D
Title: Re: CKD and Anemia
Post by: BigSky on August 14, 2006, 04:12:13 PM
Its never been a problem at our unit.

Back then and now they give blood if someone is way too low.

Back in the mid to late eighties we were given deca durabolin to build blood cells and it seemed to work pretty good for me.

Went to Epo in 89 and last year they moved to Aranesp.
Title: Re: CKD and Anemia
Post by: Zach on August 14, 2006, 06:03:02 PM
Its never been a problem at our unit.

Back then and now they give blood if someone is way too low.

Back in the mid to late eighties we were given deca durabolin to build blood cells and it seemed to work pretty good for me.

Went to Epo in 89 and last year they moved to Aranesp.

deca durabolin ... YES!  Made me strong "like bull!"    ;)
Title: Re: CKD and Anemia
Post by: Rerun on August 14, 2006, 06:23:37 PM
Black, don't ever let your guard down.  Even if you trust this Nephrologist like your "Father" you still question things that you don't understand.  Better yet your husband needs to start asking questions.  It is his life.
Title: Re: CKD and Anemia
Post by: BigSky on August 15, 2006, 05:44:00 PM


deca durabolin ... YES!  Made me strong "like bull!"    ;)

Deca should be brought back in the treatment of patients who want it.  I have yet to hear of any doctors use the protocol on dialysis patients.

Problem areas for dialysis patients are post dialysis fatigue, muscle wasting.  Studies show that patients treated with deca were able to reduce if not eliminate the post dialysis fatigue and actually showed them to build muscle while on dialysis.  Most recent study was in 99.  However the mention of steroid freaks most doctors.  While at least both of the docs here who deal with us.
Title: Re: CKD and Anemia
Post by: angieskidney on August 15, 2006, 08:00:10 PM
Deca should be brought back in the treatment of patients who want it.  I have yet to hear of any doctors use the protocol on dialysis patients.

Problem areas for dialysis patients are post dialysis fatigue, muscle wasting.  Studies show that patients treated with deca were able to reduce if not eliminate the post dialysis fatigue and actually showed them to build muscle while on dialysis.  Most recent study was in 99.  However the mention of steroid freaks most doctors.  While at least both of the docs here who deal with us.
Why would the docs freak about steroids when dialysis patients who get transplant are put on Prednisone? I don't understand, given that, why they would be so against Deca!
Title: Re: CKD and Anemia
Post by: BigSky on August 15, 2006, 09:02:03 PM
Why would the docs freak about steroids when dialysis patients who get transplant are put on Prednisone? I don't understand, given that, why they would be so against Deca!


They are two different classes of drug.  After a transplant they give glucocorticoids which are adrenocortical steroids.  Deca is an Anabolic steroid.

Title: Re: CKD and Anemia
Post by: angieskidney on August 15, 2006, 09:06:31 PM
Why would the docs freak about steroids when dialysis patients who get transplant are put on Prednisone? I don't understand, given that, why they would be so against Deca!


They are two different classes of drug.  After a transplant they give glucocorticoids which are adrenocortical steroids.  Deca is an Anabolic steroid.


Oh that makes sense! That is why they keep me on the dosage of Prednisone I am on even after the transplant failed and said something about my adrenal glands! Finally it all makes sense!

So Eprex and Arenesp don't work as good as Deca then? I have never even heard of it but have only needed anything since 2001.
Title: Re: CKD and Anemia
Post by: BigSky on August 15, 2006, 09:20:59 PM
No they work very well.

The thing with Eprex and Aranesp is that they only address the red blood cell issue.

Deca was used for blood cells and is not as good as Aranesp or Eprex.

Where deca shines is its ability to help stop the catabolic process of dialysis by keeping people in a positive nitrogen balance and thus help eliminate muscle wasting, loss and and associated muscle weakness that patients report while being on dialysis.  It also helps patients regain muscle mass.

Title: Re: CKD and Anemia
Post by: angieskidney on August 15, 2006, 09:26:41 PM
the muscle loss worries me because when i switched to hemo I was malnourished from how severe my peritonitis was with the PD I was on. I have been very week since last summer and recently have gone back to work and even though my hemoglobin is good I am easily tired and weak. So that is why I am asking.
Title: Re: CKD and Anemia
Post by: Zach on August 15, 2006, 09:28:20 PM

Deca should be brought back in the treatment of patients who want it.  I have yet to hear of any doctors use the protocol on dialysis patients.

Problem areas for dialysis patients are post dialysis fatigue, muscle wasting.  Studies show that patients treated with deca were able to reduce if not eliminate the post dialysis fatigue and actually showed them to build muscle while on dialysis.  Most recent study was in 99.  However the mention of steroid freaks most doctors.  While at least both of the docs here who deal with us.

I'd like to see that study, BigSky.  Do you have a link?  Deca was used at my clinic until EPO came out in the late '80s (or was it the early '90s).  Men received it, but I don't believe women received it, because it's a male hormone.  It has got a bad rap because it's been abused by athletes ... even those in High Schools.  I don't believe kidney patients ever received that high level of dosing.
Title: Re: CKD and Anemia
Post by: BigSky on August 15, 2006, 09:38:46 PM
I'd like to see that study, BigSky.  Do you have a link?  Deca was used at my clinic until EPO came out in the late '80s (or was it the early '90s).  Men received it, but I don't believe women received it, because it's a male hormone.  It has got a bad rap because it's been abused by athletes ... even those in High Schools.  I don't believe kidney patients ever received that high level of dosing.

Here they gave it too both male and female.  I suspect much lower doses for females.  Personally mine was 200mg every two weeks.

I no longer have the study (pitched it after both docs shot me down on it) however here is a link to a press release on it.  I used to have a link (lost it) to a medical site that did various test studies and one of them was for dialysis patients who would undergo the steroid protocol, it was suppose to be a larger study than the one in 99. .  My understanding the study had ended but I have yet to read any results of that one yet.


http://pub.ucsf.edu/newsservices/releases/2004010773/
Title: Re: CKD and Anemia
Post by: Zach on August 15, 2006, 09:48:20 PM
Thanks BigSky.
Title: Re: CKD and Anemia
Post by: Black on August 18, 2006, 11:30:52 AM
Black, don't ever let your guard down.  Even if you trust this Nephrologist like your "Father" you still question things that you don't understand.  Better yet your husband needs to start asking questions.  It is his life.

You can bet that I will try to never again be unguarded with anyone involved in his health care.  After seeing that a neph stood up at a medical conference and told other nephs that they are doing a terrible job of battling anemia in their patients you know I'm going to be watching them all even closer.

Mike is getting much better about asking questions that he ever was before.  When we visited the last dialysis clinic (the 4th one we've been to) he asked more questions than I did!  It has taken years to get him to the point where he feels comfortable in a medical facility.  He used to pass out when he had blood drawn, and hadn't been to the dentist but once in the 10 years before we got married.  In the almost two years since the PKD was diagnosed I've really concentrated on getting him to be as comfortable as possible, and relaxed enough to really listen and ask questions.  He has come a long, long way.
Title: Re: CKD and Anemia
Post by: Zach on August 18, 2006, 12:35:48 PM
Has anyone used IV L-carnitine (Carnitor) for anemia?  It has several medical uses, and one is for EPO resistant anemia.
Title: Re: CKD and Anemia
Post by: BigSky on August 18, 2006, 02:57:36 PM
Has anyone used IV L-carnitine (Carnitor) for anemia?  It has several medical uses, and one is for EPO resistant anemia.

I haven't used it for that but I did take L-carnitine tablets before dialysis as a study mentioned that l-carnitine might help with post dialysis fatigue.  Considering the out of pocket cost for it and the amount they recommended to take it wasn't worth it.  Didn't work for me either.
Title: Re: CKD and Anemia
Post by: Zach on August 18, 2006, 03:33:30 PM
It's very controversial.  Carnitor is approved by Medicare only in cases of EPO-related anemia or hypotension.  Studies have shown it might have a positive affect on muscle tissue because it works in the cell's mitochondria and helps with the transport of long-chain fatty acids.

It may have other benefits, as stated in the link below, but there needs to be a lot more research.

http://www.kidney.org/professionals/kdoqi/guidelines_updates/nut_appx10a.html
Title: Re: CKD and Anemia
Post by: Dr. Evil on August 18, 2006, 03:43:31 PM
Carnitor needs special approval from medicare, and a ton of paperwork.  And then, they still my deny the claim.  So, the center has to lay out the cash for it, then maybe medicare will pay for it if they are in a good mood!.  All of this aside, the data on the supplement is really weak. We dont know if it makes a difference or not in any outcome with ESRD.

Testosterone is the old-school way of trying to get hemoglobins up.  Lots of side effects, some good, some bad.  We may see more of it in the future.  Right now, the centers can bill separately for epogen.  Soon, this may stop, and the centers will get a flat fee for a dialysis treatment....including drugs.  So if that happens, i guess the use of expensive drugs (epo) will fall and cheap drugs (testosterone) may go up.  We will have to wait and see what happens.
Title: Re: CKD and Anemia
Post by: Zach on August 18, 2006, 05:05:27 PM
Right now, the centers can bill separately for epogen.  Soon, this may stop, and the centers will get a flat fee for a dialysis treatment....including drugs.  So if that happens, i guess the use of expensive drugs (epo) will fall and cheap drugs (testosterone) may go up.  We will have to wait and see what happens.


Dr. Evil, please don't scare us!   ;)

We should start another discussion thread on Medicare reimbursement.  It should be titled, "Myths vs. Reality:  The  True Story of Medicare ESRD Reimbursement."
Title: Re: CKD and Anemia
Post by: Dr. Evil on August 18, 2006, 06:13:56 PM
Zach...not trying to scare you.

However, if you want to have any say in these matters (or any ESRD matters), I would strongly encourage you to contact your representative in the US congress. 
ESRD reimbursement can only be changed by an act of congress (literally).  It is unlike any other part of medicare.

Our professional organization tries to help (the RPA....Renal Physicians Association)...but ultimately we are viewed as a bunch of whiny docs crying poverty every time the budget comes up for renewal. 

If congress hears more from individual constituents, it has more (...hopefully) impact......esp. if you throw in a check as well ! ;D
Title: Re: CKD and Anemia
Post by: Zach on August 18, 2006, 06:45:15 PM
As I said, we really need to start another discussion thread.

There's more to Medicare ESRD reimbursement policies than meets the eye.  Some in Congress, such as Senator Charles Grassley (R-IA) and Congressman Pete Stark (D-CA), might look at the continuing issues of waste and abuse in the dialysis unit and say that the policies need to address these perennial problems.  Back in the late 1980s, the late Senator John Heinz III was also concerned with these same issues.

Before we patients advocate for anything, we need to know the truth, the whole truth and nothing but the truth.
(That's the Perry Mason in me.)     ;)
Title: Re: CKD and Anemia
Post by: Rerun on August 19, 2006, 11:51:25 PM
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.
Title: Re: CKD and Anemia
Post by: Zach on August 20, 2006, 01:22:18 AM
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!       :o

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?
Title: Re: CKD and Anemia
Post by: Dr. Evil on August 20, 2006, 05:28:08 AM
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 $?  >:D

...be careful what you ask for.....you just may get it! ;D
Title: Re: CKD and Anemia
Post by: angieskidney on August 20, 2006, 05:44:35 AM
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.
Title: Re: CKD and Anemia
Post by: Rerun on August 20, 2006, 06:03:46 AM
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.   :P   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.
Title: Re: CKD and Anemia
Post by: BigSky on August 20, 2006, 06:59:55 AM


That's a good point.

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

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.
Title: Re: CKD and Anemia
Post by: Zach on August 20, 2006, 07:09:05 AM
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 $?  >:D

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

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."      :P

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.      :o

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
Title: Re: CKD and Anemia
Post by: Zach on August 20, 2006, 08:13:22 AM
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.
Title: Re: CKD and Anemia
Post by: angieskidney on August 20, 2006, 08:18:00 AM
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.
Title: Re: CKD and Anemia
Post by: Zach on August 20, 2006, 08:21:17 AM
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!
Title: Re: CKD and Anemia
Post by: BigSky on August 20, 2006, 01:07:08 PM

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.      :o


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? ;)



Title: Re: CKD and Anemia
Post by: Zach on August 20, 2006, 01:34:45 PM
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.       >:D

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
Title: Re: CKD and Anemia
Post by: BigSky on August 20, 2006, 02:05:24 PM

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.

Title: Re: CKD and Anemia
Post by: Zach on August 20, 2006, 02:08:32 PM
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.
Title: Re: CKD and Anemia
Post by: Black on August 23, 2006, 07:08:55 PM
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.
Title: Re: CKD and Anemia
Post by: Zach on August 26, 2006, 10:02:04 AM
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.
Title: Re: CKD and Anemia
Post by: Black on August 26, 2006, 10:42:37 PM
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!
Title: Re: CKD and Anemia
Post by: Shades_Elfen on August 27, 2006, 03:48:50 AM
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
Title: Re: CKD and Anemia
Post by: MattyBoy100 on August 27, 2006, 01:42:46 PM
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.
Title: Re: CKD and Anemia
Post by: Shades_Elfen on August 27, 2006, 03:16:51 PM
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...)
Title: Re: CKD and Anemia
Post by: angieskidney on August 27, 2006, 06:58:30 PM
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 :P

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 :(
Title: Re: CKD and Anemia
Post by: Zach on August 27, 2006, 09:21:16 PM
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.
Title: Re: CKD and Anemia
Post by: kevno on August 28, 2006, 02:53:47 AM
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.
Title: Re: CKD and Anemia
Post by: Zach on November 29, 2009, 11:10:29 AM
 :bump;

For my friend, Hurlock.

8)
Title: Re: CKD and Anemia
Post by: Rerun on November 29, 2009, 07:41:08 PM
 :bump;
Title: Re: CKD and Anemia
Post by: gregory on October 07, 2010, 11:49:47 AM
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.
Title: Re: CKD and Anemia
Post by: greg10 on October 09, 2010, 04:21:37 PM
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.
Wow, reviving an old thread.  That's good!  This fellow BigSky really knows kidney function I must say, just finished reading some of his posts in this thread.  As to Carnitor, isn't it just L-carnitine and you can just take it orally, available OTC, such as:
http://www.amazon.com/Swanson-Premium-Brand-L-Carnitine-500mg/dp/B00068GAM8

apparently a failing kidney will produce less L-carnitine.
http://en.wikipedia.org/wiki/Levocarnitine

Never mind, I see I should have searched the forum a bit further, apparently there is a concern that carnitine taken orally may result in harmful metabolites in ESRD patients (there is no abstract to this paper and the studies are hard to find):
http://www.ncbi.nlm.nih.gov/pubmed/11874598?dopt=AbstractPlus

Quote
End-State Renal Failure/Hemodialysis

L-carnitine and many of its precursors are removed from the circulation during hemodialysis. Impaired L-carnitine synthesis by the kidneys may also contribute to the potential for carnitine deficiency in patients with end-stage renal failure undergoing hemodialysis. The U.S. Food and Drug Administration (FDA) has approved the use of L-carnitine in hemodialysis patients for the prevention and treatment of carnitine deficiency (56). Carnitine depletion may lead to a number of conditions observed in dialysis patients, including muscle weakness and fatigue, plasma lipid abnormalities, and refractory anemia. A systematic review that examined the results of 18 randomized trials, including a total of 482 dialysis patients, found that L-carnitine treatment improved hemoglobin levels in studies performed before recombinant erythropoietin (EPO) was routinely used to treat anemia in dialysis patients, and that L-carnitine treatment decreased EPO dose and resistance to EPO in studies performed when patients routinely received EPO (57). Although some uncontrolled studies found that L-carnitine treatment improved blood lipid profiles in hemodialysis patients (58), the cited systematic review of randomized controlled trials found no evidence that L-carnitine improved lipid profiles (57). The National Kidney Foundation (NKF) does not recommend routine administration of L-carnitine to all dialysis patients (59). However, the NKF and other consensus groups suggest a trial of L-carnitine for hemodialysis patients with selected symptoms that do not respond to standard therapy. Those symptoms include persistent muscle cramps or hypotension (low blood pressure) during dialysis, severe fatigue, skeletal muscle weakness or myopathy, cardiomyopathy, and anemia requiring large doses of EPO (59). In general, intravenous L-carnitine therapy (20 mg/kg body weight) at the end of a dialysis session has been recommended for patients on hemodialysis (60). Oral carnitine is not advised for hemodialysis patients due to the possible accumulation of potentially toxic metabolites (see Safety) (61).

Here is a study from 2001 that suggested oral administration is comparable to intravenous:
Quote
Pharmacokinetic considerations for the therapeutic use of carnitine in hemodialysis patients
MD, PhD Eric P. Brass

Department of Medicine, Harbour-UCLA Medical Center, Torrance, California U.S.A.

Available online 10 October 2001.
Abstract

Clinical observations have suggested that carnitine supplementation may be beneficial to a subset of patients receiving chronic hemodialysis. In the absence of definitive clinical trials, the clinician must decide for an individual patient whether a trial of carnitine therapy is justified. The institution of carnitine therapy is further complicated by the availability of oral and intravenous dosing forms and by the compound's complex pharmacokinetics. The oral systemic bioavailability of carnitine in normal subjects is 5% to 16%, with peak plasma carnitine concentrations reached 2 to 6 hours after dosing. Carnitine is initially distributed into extracellular water and then more slowly enters tissue compartments with complex kinetics. Elimination of carnitine is through the urine or dialysate. Intravenous carnitine administration results in large peak plasma concentrations and assures systemic bioavailability. Orally administered carnitine has been reported to have clinical efficacy in hemodialysis patients in doses of 2 to 4 g per day in divided doses. Intravenous carnitine has also been widely used in clinical trials in attempts to demonstrate efficacy in the hemodialysis population; however, the available data do not establish the superiority of the intravenous formulation over the oral form. Intravenous carnitine may have theoretical advantages in initiating treatment when high peak concentrations are required to facilitate carnitine reaching nonhepatic tissue sites or when oral carnitine therapy is not feasible due to poor tolerance or compliance. Although comparative trials are lacking, it is probable that oral therapy can be used for long-term maintenance, regardless of which formulation was used to initiate therapy. The decision to use carnitine therapy, as well as the dose and route of administration, requires individualization based on the clinical status of the patient and the goals of therapy.