I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Bungarian on December 12, 2015, 07:04:05 PM
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On the 10th it was 10.0 and they took labs Thursday and it was 8.5
I accessed my lab results on the Davita website and have not talked to anyone at my clinic about it. What would cause it to fall? Is it too low?
I feel fine and would not know without the labs.
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From what I understand hemoglobin levels are maintained by drugs given during dialysis. The doctor will up the dosages and it will go back up.
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Our nephrologist uses epo to manage the hemoglobin. She changes dosage based on hemoglobin levels. We administer at home at start of dialysis once a week. Dosage varies over time based on hemoglobin labs. The EPO stimulates the bone marrow to make blood. Normal kidney function does that except in CKD patients.
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We administer at home at start of dialysis once a week.
Interesting ... We were told to administer at then end of dialysis at the end of the week.
Also at home
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I take epo and iron at my clinic. I guess they need to up the dosage.
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We administer at home at start of dialysis once a week.
Interesting ... We were told to administer at then end of dialysis at the end of the week.
Also at home
We too were told to do the EPO after treatment. My husband will be starting on Micera tho before the end of the month. Has to go to the clinic for that. Darn.
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I take epo and iron at my clinic. I guess they need to up the dosage.
They will need to give you more EPO first tho before they can do the iron. The EPO will produce blood cells that are needed for iron to latch on to.
You can read up on it here: "Kidney Disease And Anemia: Why Is It So, And How Is It Treated?" by Dr. John Agar dated 10-29-15.
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We too were told to do the EPO after treatment. My husband will be starting on Micera tho before the end of the month. Has to go to the clinic for that. Darn.
If they follow the same procedure they will iron load your hubby before the micera. I was given the first micera shot last clinic. NEVER AGAIN. The same night I developed spasmodic headaches :Kit n Stik; that would come every 15 to 30 seconds. Hurt like HE double toothpicks. They were bad enough to make me cringe every time. Lasted two or three days. I am back on EPO.
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We too were told to do the EPO after treatment. My husband will be starting on Micera tho before the end of the month. Has to go to the clinic for that. Darn.
If they follow the same procedure they will iron load your hubby before the micera. I was given the first micera shot last clinic. NEVER AGAIN. The same night I developed spasmodic headaches :Kit n Stik; that would come every 15 to 30 seconds. Hurt like HE double toothpicks. They were bad enough to make me cringe every time. Lasted two or three days. I am back on EPO.
That's what I fear. My husband is the quiet type, not one to ever complain so I told him to please, PLEASE speak up if he experiences any side effects.
Question: When you went back on EPO, were you able to get it from your clinic or do they write you a prescription for it? The clinic gives my husband EPO to inject at home but say they won't be carrying it anymore now that they are switching to Micera so, I was wondering if he has to go back on EPO if that means they will have to write him a prescription for it to be filled at a pharmacy.
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So far the clinic has gone back to ordering my EPO. I have clinic this week so we shall see if it changes.
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I saw the nutritionist today. She said they would increase my epo. She also said to eat more red meat and put me o something called Renavit.
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I saw the nutritionist today. She said they would increase my epo. She also said to eat more red meat and put me o something called Renavit.
When my husband's Hemoglobin was down to a 6 (long story) they increased his EPO injections from 1x a week to 2-3x a week for a month. That did the trick.
Sorry, should have added the fact that he got a blood transfusion AND THEN they increased his EPO.
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Mine dropped once, back in 2005. It was at 7.7, if I remember right. I was on PD at the time, and getting Aranesp every 2 weeks. They did all kinds of tests, looking for the reason for the drop, but never found anything. What they did for me was, first, a blood transfusion, then had to have Venofer once a week for 6 weeks, and that seemed to do the trick.
Now, my hemoglobin is high enough, I think the last one I saw was 12.5, that I don't need Arenesp anymore, and I had such nasty blood pressure issues while on Feralicit, that I was taken off that too. I take Feramax now to keep my iron stores up, but that's it.
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Latest test show it is up to 10.0
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Latest test show it is up to 10.0
That's great! How many people can say they REALLY ARE a "10"! lol And just in time for the holidays and the start of a (hopefully good) new year! Yay Hemoglobin!
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I was down to 6.2 after my transplant (hip, not kidney). I was told this was the result of the surgery, and my refusal to accept transfusions (which my MDs supported). I was exiled back to the clinic until it hit 8.5.
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Nurse tells me my numbers but my brain is a lot like a seive, it fails to hold much.
I am on a daily iron supplement in attempt to keep my iron within range. Many times it has dropped as low as 10%. Nurse gets exciited and bothers Dr until he order Iron IV. Sometimes up to 4 rounds, once a week, and I feel a lot better.
Red count is linked to iron, starts falling off once I get under about 15%. No Epo yet.
Nurse was telling me something about the NEW medicare drug changes, that Epo may no longer be covered without exception, that most all will be switched to (?) Aracept. Not sure of the name as I haven't had any, yet.
Ask about your iron levels, does it need attention? A addition to your diet of iron rich food/source?
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Nurse was telling me something about the NEW medicare drug changes, that Epo may no longer be covered without exception, that most all will be switched to (?) Aracept. Not sure of the name as I haven't had any, yet.
Fresenius has been switching patients to Micera (PEGged EPO)
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Nurse was telling me something about the NEW medicare drug changes, that Epo may no longer be covered without exception, that most all will be switched to (?) Aracept. Not sure of the name as I haven't had any, yet.
Aranesp is similar to Epo, but it works slower over a longer period of time.. so you generally only need it once or twice a month, where with Epo it was once a week at least... it was also given to us on the machine, so no extra sticks, which I liked.. when I was on it anyway.. I don't need it anymore.. Arenesp also needs iron to work, so if you get IV iron, you'll probably get it the same day
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They will need to give you more EPO first tho before they can do the iron. The EPO will produce blood cells that are needed for iron to latch on to.
You can read up on it here: "Kidney Disease And Anemia: Why Is It So, And How Is It Treated?" by Dr. John Agar dated 10-29-15.
This is wrong information. You might have misread Dr. Agar's article. If ones iron levels are too low, then EPO or any other ESA (erythropoiesis-stimulating agents) alone won't help with esrd related anemia. EPO needs iron to replenish red blood cells. I don't like to reinvent the wheel. So, while I couldn't find the article you referred to by using google search, I did find this info from the Kidney School on Anemia and Kidney Disease - http://www.kidneyschool.org/pdfs/KSModule6.pdf
On page 6-5: Anemia and Iron - "There is another key player in the anemia story besides EPO: iron. Iron is the key building block for making red blood cells. Without enough iron, EPO will still signal the bone marrow, but few blood cells will be made. "
and this on anemia management from Davita's web site: "If a patient’s hemoglobin does not go up after beginning treatment with an erythropoiesis-stimulating agent, the doctor will recheck iron. Even though there is now a higher level of erythropoietin in the body, there needs to be enough iron for red blood cell production to occur. Vitamin B-12 and folic acid levels must also be in a normal range for healthy red blood cell production to occur." - http://www.davita.com/kidney-disease/overview/treatment-overview/anemia-management-and-chronic-kidney-disease/e/4840
Hope this helps. - PatDownsII
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I saw the nutritionist today. She said they would increase my epo. She also said to eat more red meat and put me o something called Renavit.
Sorry to be a bit late in responding to your post. Not getting enough iron either through your diet and/or with supplementation (including IV) and not getting enough EPO are the two most common reasons why hemoglobin stays low in esrd patients. However, please look into the following:
* Have you been experiencing abnormal blood loss during dialysis?
* Has food become a turnoff to you? Have you been drinking more fluids or eating more high fluid content veggies/fruits in your diet? Losing real weight and replacing with fluid build up can keep Hgb low even with taking an ESA (erythropoiesis stimulating agent like EPO). Fluid overload dilutes Hgb.
* Malnutrition - what is your serum albumin level? Best to keep it 4.0-4.3 range
* Do you have inflammatory problems - arthritis, lupus, or inflammatory bowel disease?
* Internal bleeding - not uncommon if you have polycystic disease.
Some things to discuss with your nephrologist and dietitian if you feel there is any validity with your situation.
BTW, Renavit is a vitamin B-12 and Folic acid supplement. Both help in the production of red blood cells. However, since they are water soluble, we loose them during dialysis treatment. Not uncommon at all for patients to be taking this or some other renal vitamin. I take Dialyvite with Zinc and Folic acid with DHA.
Hope this helps and that your well-being improves. - PatDownsII
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They will need to give you more EPO first tho before they can do the iron. The EPO will produce blood cells that are needed for iron to latch on to.
You can read up on it here: "Kidney Disease And Anemia: Why Is It So, And How Is It Treated?" by Dr. John Agar dated 10-29-15.
This is wrong information. You might have misread Dr. Agar's article. If ones iron levels are too low, then EPO or any other ESA (erythropoiesis-stimulating agents) alone won't help with esrd related anemia. EPO needs iron to replenish red blood cells. I don't like to reinvent the wheel. So, while I couldn't find the article you referred to by using google search, I did find this info from the Kidney School on Anemia and Kidney Disease - http://www.kidneyschool.org/pdfs/KSModule6.pdf
On page 6-5: Anemia and Iron - "There is another key player in the anemia story besides EPO: iron. Iron is the key building block for making red blood cells. Without enough iron, EPO will still signal the bone marrow, but few blood cells will be made. "
and this on anemia management from Davita's web site: "If a patient’s hemoglobin does not go up after beginning treatment with an erythropoiesis-stimulating agent, the doctor will recheck iron. Even though there is now a higher level of erythropoietin in the body, there needs to be enough iron for red blood cell production to occur. Vitamin B-12 and folic acid levels must also be in a normal range for healthy red blood cell production to occur." - http://www.davita.com/kidney-disease/overview/treatment-overview/anemia-management-and-chronic-kidney-disease/e/4840
Hope this helps. - PatDownsII
Thanks so much for correcting me, PatDownsII and for the info! Gee, just when I thought I had learned something...
My husband's clinic would not give him iron until his Hemoglobin was back up to at least 9.5. Meanwhile, they had increased his EPO. Sorry if I misunderstood Dr. Agar's blog post.
I hope I can correctly link Dr. Agar's article (see below). If not, it can be read at "Home Dialysis Central" under the News/Research section and from there, the KidneyViews Blog. His article is titled "Kidney Disease And Anemia: Why Is It So And How Is It Treated?" dated Oct. 29, 2015.
http://www.homedialysis.org/news-and-research/blog/124-kidney-disease-and-anemia-why-is-it-so-and-how-is-it-treated
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When I first went to the ER and was diagnosed with kidney failure, my hemoglobin was at a 2.9. Needless to say, one of the biggest concerns was getting my iron back up. My nephrologist got me a advance sample of auxia - which is a binder with iron added. Didn't work great for my phosphorus personally, but it did get my iron up in conjunction with everything else. I'm at a 12.1 now :clap;
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When I first went to the ER and was diagnosed with kidney failure, my hemoglobin was at a 2.9. Needless to say, one of the biggest concerns was getting my iron back up. My nephrologist got me a advance sample of auxia - which is a binder with iron added. Didn't work great for my phosphorus personally, but it did get my iron up in conjunction with everything else. I'm at a 12.1 now :clap;
Glad your Hemoglobin level is back up. My husband doesn't feel "good" until his is at least at 11 or higher. He's still under 10...darn Micera seems to be very slow compared to EPO. Maybe we'll have to look into the "auxia" you wrote about. Thanks. :thumbup;
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I recently switched binders to auryxia because the calcium acetate I was taking was causing my calcium to creep up each month.
My iron stats have increased a bunch. Because of a bad reaction to micera I am still taking EPO ...... but right now my HGb is high enough they told me to put it on hold.
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It has been steady in the 10 to 11 range now.
This made me think of something else. When they put the iron in my line I can taste it in my mouth. Anyone else have this happen?
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The goals for a dialysis patient is to be between 10 and 12 hemoglobin. Too high and you will clot the machine, too low and it is not good for you.
I can taste the iron when they give it to me intravenously at dialysis, especially the venofer iron.
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The goals for a dialysis patient is to be between 10 and 12 hemoglobin. Too high and you will clot the machine, too low and it is not good for you.
I can taste the iron when they give it to me intravenously at dialysis, especially the venofer iron.
The "too high" concern is not clotting the machine but thrombolytic side effects from EPO/Micera. The research shows that attempts to push HGB into a "normal" range increases risks of things like CVAs, PEs, MIs and all sorts of nasty effects. These risks are substantially reduced by targeting an HGB of 10-11 in renal patients rather than 12-14.
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Anyone being told by their clinic that they must stay on Micera at the max dose for at least 3 months before they can be switched back to EPO? Despite his Hemoglobin level continuing to drop on Micera and Iron IV's, that is what Fresenius told my husband. Nurse said that they expect that his Hemoglobin will "suddenly shoot up" on the Micera but that they have to give it a try for at least 3 months. By the way, Fresenius signed a contract with the producers or makers of Micera so all this sounds fishy to me. He wants to go back on EPO, he's anemic and feeling it. All other labs are good.
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.......................Vitamin B-12 and folic acid levels must also be in a normal range for healthy red blood cell production to occur." - http://www.davita.com/kidney-disease/overview/treatment-overview/anemia-management-and-chronic-kidney-disease/e/4840
BTW, Renavit is a vitamin B-12 and Folic acid supplement. Both help in the production of red blood cells. However, since they are water soluble, we loose them during dialysis treatment. Not uncommon at all for patients to be taking this or some other renal vitamin.
These little tidbits didn't stick with me when I first read these postings. Now that I have a clearer head I have to wonder if either of these are contributing to my very low energy.
Since my memory isn't near what it used to be, I think I will print this and put it in my PD Log, thus at Clinic next month I can be reminded to ask more questions. Like do our labs normally check these things.
My red count hasn't yet ever dropped very much, but my iron is constantly a problem, often dropping as low as 10% dispite taking the daily supplement. I cannot have much spinach as it drives my gout. And THAT is no fun. And I love, cooked or raw.
Thanks Pat Downs for digging out this and posting. Information like this can make a big difference in helping all of us stay as healthy as possible.
Take Care,
Charlie B53
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Anyone being told by their clinic that they must stay on Micera at the max dose for at least 3 months before they can be switched back to EPO?
Micera seems 2b working 4 me, and the head of hematology at a major hospital also approved it, however, the local FMC clinic staff was very up front about the fact that the switchover was cost motivated.
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Anyone being told by their clinic that they must stay on Micera at the max dose for at least 3 months before they can be switched back to EPO?
Micera seems 2b working 4 me, and the head of hematology at a major hospital also approved it, however, the local FMC clinic staff was very up front about the fact that the switchover was cost motivated.
2-3 injections per month, the nurses time spent injecting the patient and preparing and administering Iron IV's, cost of test tubes, needles, syringes, alcohol wipes, gauze, tape, shipping, cost of lab technicians to perform tests and document lab results (sometimes 2-3 times a month), nurses time following up on lab results and notifying patient, completing required paperwork, etc...AND...dealing with an anemic patient on your record who is feeling poorly does NOT seem very practical to me.
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Syringe prices are measured in cents. The clinic is not decreasing the number of home patients the home care RN supports because she administers Micera. Syringe cost included in price of drug. Lab owned by Fresenius, so the biggest part of the lab cost is probably the Fedex shipping. The bean counters are convinced it is cheaper.
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Bean Counters = Necessary EVIL
I'll leave it at that as they tend to drive my BP up and I don't need that.
My Mother was a CPA so I very well understand the need for accounting. But when Corporate makes decision strictly on cost instead of effectiveness, reliability, and all the things that really make the difference it's like replacing Quality with Corporate Greed.
I am very surprised at myself that I managed NOT to write a book as I usually do. I run off at the mouth.
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I asked a big name hemo doc about Micera v. Epo.
He told me he thought it was fine, and might even be a good idea. He is outside my dialysis treatment loop so he is not involved in the financial incentives.
If you want to worry about financial incentives, just look at how the $$ has driven the US to a 3 day/week standard when every other day would be better for most patients.
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I wonder how many companies these days are finding themselves cooking the books. In the end, they suffer, their employees suffer, their customers suffer, we ALL suffer. >:(
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Any suggestions for how my husband can politely tell his Neph to switch him from Micera back to EPO or at least do something about him being anemic? His Hemoglobin is still low at 8.3 and not budging. All other labs are good. Seems unacceptable that they would let a patient continue being anemic month after month. I feel bad for him and helpless with this.
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Any suggestions for how my husband can politely tell his Neph to switch him from Micera back to EPO or at least do something about him being anemic?
If the neph says no, ask:
1. Is this decision being made on a medical, financial or policy basis?
2. If it is not being made on a medical basis, to whom do I appeal?
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Thanks for the suggestion. I don't go to his appts with him but if I did, that's probably what I'd ask. My husband is the quiet polite (shy) type and has had the same neph for years. Doubt he'd use your suggestion but I do think he's at the point where he's going to be firm. Of course I offered to go with him and be his "advocate" but he doesn't want me to. I don't know why he can talk to me and not others but I wish he'd be more assertive in this case. I don't want to cause trouble between him and his neph so I bite my tongue. Da*mn disease.
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It can seem very difficult to gain information when you are not allowed to go and ask the hard questions.
Will your Husband follow directions?
I'm thinking of you will write a couple direct questions down, give the note to your Husband immediately before he leaves for his appt. Ask him to PLEASE ask these so we can both understand the reasons for these decisions.
If he will then either the Dr will give good answers, or change back to Epo.
Good Luck!
Charlie B53
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It can seem very difficult to gain information when you are not allowed to go and ask the hard questions.
Will your Husband follow directions?
I'm thinking of you will write a couple direct questions down, give the note to your Husband immediately before he leaves for his appt. Ask him to PLEASE ask these so we can both understand the reasons for these decisions.
If he will then either the Dr will give good answers, or change back to Epo.
Good Luck!
Charlie B53
I had the same idea, which he quickly objected to. I guess if he doesn't have a conversation with his neph then not much I can do but accept it and the consequences. He's smart, he knows and is very worried about the risk of heart damage caused by prolonged anemia as well as other risks but...he doesn't always (if ever) speak up to the people he needs to speak up to. Wish certain people in his life knew this little fact about him. I cannot make him say or do what he does not want to so I don't. But it sure sucks seeing him feel so lousy. Saddens me. *long sigh*
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:guitar: Hubby's neph looked at him today and asked how he was doing. He said "ANEMIC". Neph looked over his chart and labs, declared that the Micera was not working for him and ordered the nurse to put the man back on EPO! Whew!!! Of course he has to wait about a week since he was given a shot of Micera and some Iron the other day but come next week...he gets to go back to giving himself EPO injections at home AND hopefully emerge from this anemic nitemare!
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Sorry for reading this a bit late, but mighty glad he's got his EPO back
:yahoo;
Love, Cas