I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: hurlock1 on November 17, 2009, 09:13:17 AM
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I just found out that Epogen, a medicine that is supposed to prevent anemia in dialysis patients, costs $700.00 a dose! I'm getting 3 doses a week. I don't have to pay it. The insurance company and medicare has to pay. But I'm hoppin' mad! Gold is on the market for $1136.00 per ounce. I wonder if the doctor is getting a kickback. What did they use before the got Epogen? Does anybody in here know how long Epogen has been on the market? Is there another drug that does the same thing? There is no "generic" Epogen because of some loophole in the law. Does anybody else have these same concerns?
jmz :Kit n Stik;
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I just heard about Epogen yesterday... but nothing about the cost.
My nephrologist told the nurse to stop my epogen because my heomglobin was getting too high. It's always (before dialysis been way to low). Nurse told him I never got Epogen. Now I'm concerned. Is he wanting to save money? Was she already saving money but not giving it? Do I need it? You know, I don't reallly care about the cost as long as I get it if I need it. I've paid Pretty Pennies for insurance all my life and by gosh I want some of it back now.
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it depends on your center which type of drug you get.
Mine uses Arnesp (sp) instead of epo but both do the same thing.
if your hemoglobin is under 10 they will use epo or asnep to raise your hemoglobin lvls. Normal lvls if i recall are between 12-14. If you are getting epo or the other make sure your iron is not being deplenished which has its own set of difficulties if it gets to low.
When they put me on arsnep i had to also get drips of iron. Both together raise your red blood cell count which raises your hemoglobin.
I think arsnep goes for about $350 a shot.
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Honestly, I'm not all that concerned how much money I cost my insurance company. My life is worth it! :bow;
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Carl hasn't needed Epo for several months, now. But when he did the protocols were very strict. They called it liquid gold! We had to sign out a tiny, tiny vial and bring back the unused portion when it expired before we could get the next vial. I gave Carl his shots at home since we do home hemo.
Aleta
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Willowtreewren, do you give the medications through the port on the dialyzer? I give all the medication through there and it makes it so much easier; no more sticking.
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Epogen is utilized due to majority of people with ESRD dont produce "erythropoietin" which is produced by the kidneys to stimulate red blood cell production from the bone marrow. Yes it is very expensive and is goverment monitored due to abuse in the past by dialysis clinics to increase thier profits. There is very strict monitoring and nurses/clinics must document every amount given faithfully. There are strict guidelines in relation to administration. In the past before Epogen or Arnsep patients who had low hgb levels required blood transfusions. With the use of Epogen the need for blood transfusions has been significantly diverted. Imagine everytime you dropped below a certain level you would have to go to the hospital and recieve blood. So Epogen and Aransep has resulted in dramatic changes in the dialysis world. It can be given IV via your machine or subcutaneous (just under the skin). If given SQ tends to be more effective and requires smaller doses as it's longer acting usually given only once per week but IV avoids the stick yet usually requires to be given every treatment. Also if supplemented with doses of iron it can be a very effective medication in preventing anemia thereby avoiding the need for repeated transfusions.
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I would give the shot SubQ because that is the protocol in our center.
I give a student an insulin shot every day any way. I've been doing that for years. Giving shots doesn't bother me.
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I get my own Procrit and inject by my self, so no any clinic or Medicare interferes with my use. I am very strict to follow my own protocol: to keep hemoglobin between 11 and 12. The normal level for men is >13. My private insurance pays for it.
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Honestly, I'm not all that concerned how much money I cost my insurance company. My life is worth it! :bow;
Amen to that :2thumbsup; Yes, Epogen & Aranesp are costly medications, but they are highly specialized injections, and there is no substitution for them. They will be generic someday when the patent expires, but without patent protection we would not have any new drugs developed - it would not be worth it to the pharma companies!
Prior to starting Dialysis I gave myself Aranesp injections at home - what a Godsend those injections were, as I was able to have a bit of energy again! Now they give me Epogen at dialysis, but its PRN because sometimes when they check my HGB its within normal range, then after a week or 2 off the Epogen it will get low, and the cycle starts over again.
DWCRAWFORD - you should ask to see your labs if you are questioning whether or not you really need it. At least at my center, I request & receive & save copies of all my labs, that way I know for sure what my levels are and can make sure I am getting the best treatment and that nothing is missed. Good luck to you :)
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What did they use before the got Epogen?
I thought before the Epogen we all had to have more transfusions, wasn't that the only way to correct anemia previously?
Which increases antibodies and more problems with getting a transplant. Somebody please correct me if i'm wrong.
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I'm wondering if anybody here has heard how abuse the to medicare system is leading to the collapse of the healthcare system. "Those poor pharmaceutical companies" They're charging that much because they can! "See a need, fill a need!" And charge people through their. . .
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It is kind of like the cost of chemo. My bills for the chemo infusions were enormous, but these are specific drugs for a specific need. My arenesp has always been paid for, thank goodness. My hemoglobin was 7 or 8 until I got the wonder drug, epo. :thumbup;
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I thought before the Epogen we all had to have more transfusions, wasn't that the only way to correct anemia previously?
Which increases antibodies and more problems with getting a transplant. Somebody please correct me if i'm wrong.
Yeah, at my dialysis center, one of the older nurses told me that when she started out in this job 20 years ago, dialysis patients got monthly transfusions. They would hang up the blood drip at the dialysis machine.
And that was risky: Hepatitis, HIV, allergic reactions (making kidney transplants more problematic), the whole nine yards.
Actually, when I was first diagnosed with ESRD, my hemoglobin count was so low that my neph decided that even Epogen/Aronesp would take too long to work. So I started off with two units of blood transfusion.
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So true! When I was diagnosed in 1974, started dialysis in 1978-1981, I had many blood transfusions, also plasma exchanges. There were alot of risks involved..b4 1992(or was it 1994?), they hadn't tested for those as RightSide states. Many individuals who have had transfusions, tattoo's may not know if they may be carrying these virus's.
What is strange, it does normally raise antibodies..I even had a baby, which also increases anitbodies, a year ago I got evaluated for a 3rd transplant..I thought for sure my antibodies would be high. Turns out the antibodies were at 0!...I asked my transplant coordinator to make sure she had the right patient record in front of her..sure enough she did. Am I one of those 'Puzzle People' ?
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Actually, when I was first diagnosed with ESRD, my hemoglobin count was so low that my neph decided that even Epogen/Aronesp would take too long to work. So I started off with two units of blood transfusion.
Same here, i had 2 or 3. All a bit of a blur now though.
I asked my transplant coordinator to make sure she had the right patient record in front of her..sure enough she did. Am I one of those 'Puzzle People' ?
It would have been hard to believe, but good news.
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Thats nothin, 1 round of vancomycin (21 days) cost $5500.
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Those with Mediacare as primary, EPO costs about $10.00 per 1,000 units.
Also, back in the old days before EPO my center gave the men intramuscular injections of Deca Durablin to help with our hemoglobin levels. We all were given folic acid right after hemodialysis treatment.
As for cheating the American taxpayer, here's a recent article about EPO, etc,:
Amgen suit unveils industry 'overfilling' practices
" ... A lawsuit launched against Amgen Inc. on Oct. 30 raises important questions about what is accepted practice when it comes to manufacturing and administering certain drugs and whether the company encouraged the fraudulent sale of free drugs to increase their use.
The fifteen state attorneys general behind the suit allege that Amgen exceeded the amount of “overfill” necessary in its vials of anemia drug Aranesp and then its sales staff used that extra drug, placed in each vial so that a full dose can be extracted and administered with a needle, to encourage purchases and the false billing of Medicaid for the additional medicine...."
Read more about it:
http://www.vcstar.com/news/2009/nov/10/amgen-suit-unveils-industry-overfilling/?print=1
I posted about this issue here at IHD a few years back.
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Thats nothin, 1 round of vancomycin (21 days) cost $5500.
A "round" of Epogen of 21 days is $14700.00
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What does the Aranesp cost in comparison to Epogen?
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A "round" of Epogen of 21 days is $14700.00
Where did you get that figure from? That doesn't sound right. Unless you mean for an entire dialysis unit. My figure was per person.
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The cost is going to vary based on the amount of epogen you get. I get about 1/2 of what I used to get.
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When my husband was on hemo he had 2 epo injections through his lines twice a week. He has just returned to CAPD and has gone back on to an injection call MERCEA apparently it is a different kind of epo that lasts, wait for it a month I dont know whether this is cost cutting or what.it is supposed to have the same effect as epo. Has any one on here heard of it or taken it? We live in England.
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A "round" of Epogen of 21 days is $14700.00
Shoot, I'm glad I read this post again because I remembered I left 5 vials of Epo in my car! :o :o Holy crap, I'm relieved that it has been cold out!
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When my husband was on hemo he had 2 epo injections through his lines twice a week. He has just returned to CAPD and has gone back on to an injection call MERCEA apparently it is a different kind of epo that lasts, wait for it a month I dont know whether this is cost cutting or what.it is supposed to have the same effect as epo. Has any one on here heard of it or taken it? We live in England.
MERCEA is the same as Aranesp in the States, and it is longer-acting, thus the need for fewer injections.
The real issue is his hemoglobin, which should be between 10.5 and 12.5 g/dl.
Here's the UK Kidney Foundation's "Know your Numbers."
http://www.kidney.org.uk/Medical-Info/other/know_nos.html
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Those with Mediacare as primary, EPO costs about $10.00 per 1,000 units.
Zach, does that include non-dialysis patients?
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Those with Mediacare as primary, EPO costs about $10.00 per 1,000 units.
Zach, does that include non-dialysis patients?
I don't think so. Just those on dialysis.
Sorry.
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My husband was only on epo for a little while just before PD stopped working and just after he started hemo. If memory serves me right at that time each shot was about $70 Canadian. We were billed for it at the time because it wasn't covered by our insurance or MCP but we were told not to pay for it because it was in the process of going to be covered. That was 13 years ago so I am sure the price has gone up since. He is lucky his hemoglobin is always in the normal range and sometimes a little above.
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Zach you are the only one I know who has heard of mercea, no one else seems to have heard of it. I do not know how much it costs but I know my husband prefers epo once a week.
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Zach you are the only one I know who has heard of mercea, no one else seems to have heard of it. I do not know how much it costs but I know my husband prefers epo once a week.
I may be incorrect, so perhaps you can ask you husband's doctor.
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A "round" of Epogen of 21 days is $14700.00
Where did you get that figure from? That doesn't sound right. Unless you mean for an entire dialysis unit. My figure was per person.
21 days times $700.00 = $ $14700.00
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WE can refuse it. Say you don't want Epogen. I will if you will. Let's make a list of people who will go into dialysis and REFUSE the damn expensive drug. YOU CAN LIVE WITHOUT EPOGEN! You may need a blood transfusion now and then but that can be donated by a friend or family member for less money. Hope you don't want a transplant though because blood transfusions just add to your antigens.
I will be first! NO EPOGEN!
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A "round" of Epogen of 21 days is $14700.00
What is you hemoglobin? And what is the dose per treatment you receive?
EPO costs your dialysis center about $10.00 per 1,000 units.
If you or your private insurance company is being charged more, than it is your dialysis facility that is part of the problem.
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A "round" of Epogen of 21 days is $14700.00
Where did you get that figure from? That doesn't sound right. Unless you mean for an entire dialysis unit. My figure was per person.
21 days times $700.00 = $ $14700.00
You take vanco 4 times a day for 21 days, you take EPO or Aranesp once every 1 or 2 weeks. $14,700 would be for 21 doses, not days! I was talking about time frame versus money spent, seeing as time is money.
Oops I assumed my Aranesp dosage of once every 2 weeks when I was on PD, clearly everyone gets a different dose depending on individual characteristics and modality of dialysis. Which reminds me of an article I read about how hemo clinics purposefully administer more aranesp to maximize profits: http://www.boston.com/business/healthcare/articles/2006/10/24/some_see_profiteering_in_clinics_use_of_drug/
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Which reminds me of an article I read about how hemo clinics purposefully administer more aranesp to maximize profits: http://www.boston.com/business/healthcare/articles/2006/10/24/some_see_profiteering_in_clinics_use_of_drug/
Good research, calypso!
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I was having 40mcg of Aranesp weekly administered in the lines when i was on HD.
Now on PD i have 20mcg every 12 days. I was told that on HD you lose more blood cells through the dializer.
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EPO, has actually been out since the early 1990s. Yes it is expensive. THey have told me once my hemoglobin levels go above 12 I cant have anymore EPO. THey claim that hemoglobin levels higher then 12 you are at risk for a seizure. But what I rreally think it is, they dont want to pay for it (medicare)
Before EPO, you got a blood transfusion. I do know of a guy who has been on dialysis since 1968. Every time his hemoglobin or hemocrit dropped below a certain number, he had a blood transfusion. Which causes a lot of antibodies, he has no chance of getting a transplant because he is 100% desentized.
Lisa
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DONT YOU DARE> I got kicked off the transplant list once because I refused the Aransep!
They said they had to put me on hold for the transplant list because they wanted to make sure I was going to take my medicine.
:(
I am trying to tell people dont refuse nothing! I am going to state this in my book too. :boxing;
Lisa
WE can refuse it. Say you don't want Epogen. I will if you will. Let's make a list of people who will go into dialysis and REFUSE the damn expensive drug. YOU CAN LIVE WITHOUT EPOGEN! You may need a blood transfusion now and then but that can be donated by a friend or family member for less money. Hope you don't want a transplant though because blood transfusions just add to your antigens.
I will be first! NO EPOGEN!
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Good advice Lisa, the Doc prescribes our medication for a good reason.
If you refuse meds now they think you could do the same with the immune suppressants.
DONT YOU DARE> I got kicked off the transplant list once because I refused the Aransep!
They said they had to put me on hold for the transplant list because they wanted to make sure I was going to take my medicine.
:(
I am trying to tell people dont refuse nothing! I am going to state this in my book too. :boxing;
Lisa
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I was not saying to refuse a life saving transplant drug. I was stating that if you want the price of Epogen to go down or anything for that matter (Gasoline) you boycott it. You can live without Epogen. I did for years.
Having said that..... the transplant team is forcing you to take Epogen.... "Thank You" From: Amgen $$$$$
:bow;
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DONT YOU DARE> I got kicked off the transplant list once because I refused the Aransep!
They said they had to put me on hold for the transplant list because they wanted to make sure I was going to take my medicine.
:(
I am trying to tell people dont refuse nothing! I am going to state this in my book too. :boxing;
Lisa
No, no, no, Lisa! With respect, I could not disagree with this advice more. Rerun is right, they are forcing you to take a drug that you stated, for whatever reason, you did not want. Patients rights are crystal clear on this issue. (You are in the US, right?) Patients have a right to refuse any treatment or any part of any treatment without their care being compromised.
There is, however, an effective and an ineffective way to refuse treatment. I suspect they were taking advantage of the fact that you are young and female and perhaps did not have a history of standing up for yourself? With any new drug, I insist on first being given the option to do my own research and consult a doctor whom I trust. Aranesp was introduced in 2005, and there have certainly been issues - issues like kidney patients dying in greater numbers when their hemoglobin gets above a certain number and the drug is still being administered. I take Aranesp because it works for me. I hate getting the shot (ouch!) and the price is ridiculous, but I do need it.
DO NOT let these doctors convince you that they are gods, infallible, or that they always have some mysterious, doctor-ey reason for something that you could not possibly understand because you don't have some fancy degree. Ask questions, demand answers. Change nephrologists, dialysis centers, or transplant centers if they are going to play list games with you. I could go on and on, but I would be saying the same thing a hundred different ways: do not let yourself be bullied into treatment.
On a related topic, I was under the impression that new state laws ban most gifts and kickbacks from pharmaceutical companies to doctors (in certain states). I have also heard that there is a way to look up what your doctor is receiving from these companies? If anyone has a link, I would love to see it. I have searched for a way to look for my state and found nothing.
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Medicare has very strict antikickback laws. I will look for the link. We (MD's and nurses) have to take an inservice and a test every year.
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If you were to purchase the Epogen at Sam's Club it would only cost about $400 depending on the dosage.
At our clinic it is $2000 a dose.....for people with traditional insurance. I don't know what it is for people on medicare but I will in about a month!!! :Kit n Stik;
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EPO, has actually been out since the early 1990s. Yes it is expensive. THey have told me once my hemoglobin levels go above 12 I cant have anymore EPO. THey claim that hemoglobin levels higher then 12 you are at risk for a seizure. But what I rreally think it is, they dont want to pay for it (medicare)
Before EPO, you got a blood transfusion. I do know of a guy who has been on dialysis since 1968. Every time his hemoglobin or hemocrit dropped below a certain number, he had a blood transfusion. Which causes a lot of antibodies, he has no chance of getting a transplant because he is 100% desentized.
Lisa
Taken from Wikipedia:
"Darbepoetin alfa (rINN) (pronounced /dɑrbəˈpɔɪtɨn/) is a synthetic form of erythropoietin. It stimulates erythropoiesis (increases red blood cell levels) and is used to treat anemia, commonly associated with chronic renal failure and cancer chemotherapy. Darbepoetin is marketed by Amgen under the trade name Aranesp."
"Like EPO, its use increases the risk of cardiovascular problems, including cardiac arrest, arrhythmia, hypertension and hypertensive encephalopathy, congestive heart failure, vascular thrombosis or ischemia, myocardial infarction and edema. Also seizures and strokes. "
"Other reported adverse reactions include hypotension, fever, chest pains, nausea and myalgia"
"Erythropoietin is associated with an increased risk of adverse cardiovascular complications in patients with kidney disease if it is used to increase hemoglobin levels above 13.0 g/dl.[23"
I'd still use it though. As much as safely possible and amounts recommended by the doctor.
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"Erythropoietin is associated with an increased risk of adverse cardiovascular complications in patients with kidney disease if it is used to increase hemoglobin levels above 13.0 g/dl.[23"
I'd still use it though.
My hemoglobin went close to 150, and i was taken off it for three months. then when i had bloods done it was around 80. :Kit n Stik;
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THat may be you. You might be ok without EPO. Usually we dialysis patients need EPO to make red blood cells, without it we will become anemic.
Yes you are right we can boycott and refuse EPO, but at the same time the transplant team has a right to refuse you a kidney. They think if you are not going to do what you are told to do on dialysis, when you wont take a bunch of pills.
Lisa
I was not saying to refuse a life saving transplant drug. I was stating that if you want the price of Epogen to go down or anything for that matter (Gasoline) you boycott it. You can live without Epogen. I did for years.
Having said that..... the transplant team is forcing you to take Epogen.... "Thank You" From: Amgen $$$$$
:bow;
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THat may be you. You might be ok without EPO. Usually we dialysis patients need EPO to make red blood cells, without it we will become anemic.
Yes you are right we can boycott and refuse EPO, but at the same time the transplant team has a right to refuse you a kidney. They think if you are not going to do what you are told to do on dialysis, when you wont take a bunch of pills.
Lisa
I was not saying to refuse a life saving transplant drug. I was stating that if you want the price of Epogen to go down or anything for that matter (Gasoline) you boycott it. You can live without Epogen. I did for years.
Having said that..... the transplant team is forcing you to take Epogen.... "Thank You" From: Amgen $$$$$
:bow;
A good transplant team will not see a patient as non-compliant for something like refusing Epogen. And any dialysis clinic who makes a claim like that in a patient's file are opening themselves to a lawsuit by the patient, so it seems unlikely that it could happen. More is being revealed about the Epogen drug pushers and it's probably going to affect how the Epogen is distributed. http://ihatedialysis.com/forum/index.php?topic=16845.0
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Isn't it wonderful that we live in a country where, now at least, we can make our own determination about whether to accept or reject drugs, and at the same time, bear the responsibility for our decisions?
In the meantime, I've been following this thread hoping I could learn more about epogen. My hemoglobin is too high, Nephrologist asked about epogen and I've never been on it. Next week I am scheduled for a Cat Scan to look for some king of possible cyst on my kidney. It is a little scary but at the same time I trust my doctors and want to hurry and get this over with. Just wondering if anyone could shed any insight into the possible repercussion of too high hemoglobin and and will it be a simply matter.
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Dan,
In another thread I read tha too high Hgb can make the blood "sticky" leading to clots and adverse effects on the heart.
Today Carl's Hbg was 12.4, the cut off at our clinic for administering Epogen. I'll be giving him small dose (.15 units) weekly until his next labs in January. He has not needed it for many months. He also gets Venifer (iron) by IV when we go to the clinic every month.
Aleta
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My labs this time showed 15.4. It is the first out of range marker I've received other than low phosphorous and low protein. This is obviously why the doctor asked me to come in to check for possible reasons..... I guess. Unless he just wants to take me to lunch or somehing (LOL).
There is something seriously wrong with a person who always HAS to end a comment with some stupid... I need to locate that "self esteem" thread again.
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A smoker will have a high HGB as well. Just another reason for it.
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never ever been a smoker...
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Dehydration can cause your hemoglobin to read too high.
Easily corrected.... :beer1;
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I'll drink to that! :2thumbsup;
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OK, Cariad. So could constantly stretching how my they take off of fluid be a factor. They don't believe my small gain of 1 or 1 1/2 kilos and try for 3 removable but always have to turn it off because of BP. Are you saying that could raise the hemoglobin???
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If you are dehydrated for any reason, dialysis or otherwise, it will make your hemoglobin read deceptively high because there will be a greater ratio of hemoglobin to fluid. The concentration of hemoglobin reads higher, but your actual hemoglobin amount may be fine. The reading that they take is your concentration of hemoglobin, not the actual amount. That's why the fix may be as easy as drinking up!
Sorry, not a medical pro, so explanation may be muddled.... Good luck with your appointment.
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If you are dehydrated for any reason, dialysis or otherwise, it will make your hemoglobin read deceptively high because there will be a greater ratio of hemoglobin to fluid. The concentration of hemoglobin reads higher, but your actual hemoglobin amount may be fine. The reading that they take is your concentration of hemoglobin, not the actual amount. That's why the fix may be as easy as drinking up!
Sorry, not a medical pro, so explanation may be muddled.... Good luck with your appointment.
So the opposite should be true. When I come in after a weekend and the first thing they do is take a lab draw then my fluid is really high. That should make my hemoglobin deluded? So my actual hemoglobin is probably higher than I get credit for.
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When I come in after a weekend and the first thing they do is take a lab draw then my fluid is really high. That should make my hemoglobin deluded? So my actual hemoglobin is probably higher than I get credit for.
To make more money off you, Rerun!
Also might be considered fraud.
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