I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: RightSide on January 06, 2011, 08:28:13 PM
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My latest blood test showed that my hemoglobin count is 10.8. That's definitely anemic. It has been declining slowly since last year when it was around 13.
I do an aerobic workout on my elliptical trainer every day, in addition to shoveling snow in the winter and other things that keep me active. I can definitely tell the difference now that my blood count has dropped: I feel chillier, and I don't have quite the pep that I had last year.
I have pleaded with my neph to raise my blood count back again, but he has pretty much refused. He's seen all the latest and greatest info about how Aranesp and Epogen can cause strokes in patients whose hemoglobin is normal (13-14). And so he told me that he just can't get my blood count up to what a healthy person would consider normal.
So what's the story with you all? Do your nephs keep you anemic too, or do they try to get your hemoglobin close to normal?
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I've always been pretty lucky. My Hgb has always been 149-155 g/L (14.9-15.5 g/dL in U.S. measurements)
Haven't had need for Venofer or Aranesp (Epo) in 5 years or more.
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Mine is at 11.9. I feel tired a lot and some days have no energy at all. But, the neph says we have to wait until my Hematocrit comes down to 31 before the insurance will pay for a shot. It is at 34.9 right now.
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When I was on Dialysis and using aranesp every 2 weeks (50's) I was usually around the 110-120 range (11.0-12.0) which was perfect. Post transplant I got as low as 72 (!), spent quite some time in the 80's (but I felt full of beans!!). Most recently I've been 101-107 (10.1-10.7) and it's coming up slowly as the production of red cells ramps up. Luckily the docs relented on giving me blood which I didn't want (PRA) and they didn't either and I came up naturally.
So technically I am still too low but I think I am getting there :)
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Hi all you anaemics!
My husband recently started dialysis (three months on HD and now CAPD) On HD he was given blood and iron and went from 7.0 to 12.9. Last results showed 11.6 - We have been delivered Aranesp - but your talk of stroke has worried me a little - will wait to see the consultant before using it. I think they like you to be above 10 but below 13 when on dialysis.
Going to google Aranesp immediately - what did we do before google!
All the best,
Kay
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Hi, RightSide - looking at my last two sets of labs, in November my hemoglobin was 12.4 and they held my Epogen. In December it had dropped to 10.9 and they restarted the Epo. The reference range on my labs is 12.0 to 16.0, but they always hold the Epo if it climbs above 12.0; after reading Amgen's Safety Information Sheet on Epo, it's just as well.
http://www.epogen.com/patient/safety_info/important_safety_information.html (http://www.epogen.com/patient/safety_info/important_safety_information.html)
I'm hoping to feel well enough to start dancing again so I can manage my anemia without Epo; right now I'm pretty much just a slug and that doesn't help.
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They have let me go as low as 7.9 and it was dreadful , despite epo and venofer and i ended up having 3 transfusions (doesnt matter as im not on the transplant list). Now im finally up to 10 and they think that is good !
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Jenna's neph said they now recommend epo at 11.1 or under (I think.) He said risks are too great for kidney patients of heart attack or stroke and it's better to be a little lower than normal. He did agree, however, that one patient may feel fine at 10 while another is really tired, so they cannot use the same number for every patient.
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The new bundle is has patients in range between 10 to 12. And the Clinics will be lose 2% of total payment if (I think)80% of their patients are not in range. The government studies (and Others studies) do show that a Higher Crit leads to All kinds of bad results....not just strokes. That is true except for those who just seem to not need injections to keep their count in range.
But as the Bundle isn't going to pay per dose any more, Patients are only get enough EPO to keep them above 10 and below 12. That is the range and that is what the clinics are going to keep you at..it will maximize their proffits.
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The new medicare bundle guideline of 10 to 12 g/dl is probably optimal for a lot of patients, but the optimal level is really gender, age and physical-activity dependent. Most patients will also benefit from up to 8 blood measurements of Hgb per month instead of the typical 1 to 2. Having tested Hgb levels each time we had a dialysis treatment, measured with a POC (point of care) device, we have found that it is much easier to adjust epoetin injections given the near instant feedback of hemoglobin levels. We also do epoetin injections subcutaneously instead of flushing it into the blood stream because subcutaneous injection tend to require only 30% of the IV dosage and the epoetin is released slowly into the blood stream as it is in a normal kidney function.
http://ihatedialysis.com/forum/index.php?topic=20798.0
Interestingly, you are more likely to have higher Hgb levels with higher vitamin D levels and/or sun(UV) exposure. So if you don't get enough sun during the winter and you have low Hgb levels, try some vitamin D supplements and/or sun exposure.
Ergocalciferol (ERGO) vitamin D supplementation in hemodialysis patients deficient in 25-OH vitamin D may decrease the need for erythropoietin (EPO)
http://ihatedialysis.com/forum/index.php?topic=21423.msg354598#msg354598
Erogocalciferol is vitamin D2, generally derived from mushroom ergosterol. You can make your own ergocalciferol by exposing mushroom to UV light.
http://en.wikipedia.org/wiki/Ergosterol
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For some reason which no one can find an answer except to drink more, for the past three years my blood count has between 140-150. Had scans fro cysts or worse but nothing. Nurses used to regularly throw the line but still would not go down. Did muck up my fistula as it coagulated so the instruction from the neph was to drink more.
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Rightside, see if you can get your doc to compromise. I get that he doesn't want you to be at 13 or 14, like a healthy male should be. But when I was on, I did wonderfully at 11, so-so at 10, and complete crap at 9. 2 points can make a huge difference in your energy levels. See if you can get him to agree to aim for high 11 or low 12. Your quality of life may really improve with even a small boost.
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I have pleaded with my neph to raise my blood count back again, but he has pretty much refused.
How about I.V. iron to help raise your hemoglobin?
I receive Ferrlecit every four months.
Also, do you take enough folic acid and vitamin B12?
Both folic acid and vitamin B12 help your body make red blood cells.
8)
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I was surprised yesterday when the neph asked if Jenna is taking oral iron supplements. Her hemoglobin is 10.4 and he wants it higher, but is reluctant to give epogen unless she does iron first (I think, but I now realize I am not sure what he wants.) :P
Jenna is taking a multivitamin daily. It has Folate (as folic acid) 400mcg, Vitamin B-12 (as cyanocobalamin) 6mcg, (among other things) but I don't know how much is "enough."
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The danger line for me is under 100, the upper limit is 130, usually I skate around between the two with weekly or fortnightly Aranesp infusions usually accompanied by iron. I am keen to take up NHHD because there are reports that this can eliminate the need for Aranesp or EPO.
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What is NHHD?
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Just a guess - Nocturnal Home HemoDialysis.....
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I have pleaded with my neph to raise my blood count back again, but he has pretty much refused.
How about I.V. iron to help raise your hemoglobin?
I receive Ferrlecit every four months.
Also, do you take enough folic acid and vitamin B12?
Both folic acid and vitamin B12 help your body make red blood cells.
8)
My neph is reluctant to prescribe either more Aranesp or more Venofer (that's iron sucrose). He finally agreed to increase my iron dose for just ONE MONTH and that's all.
I understand his concern about the strokes. But if I'm anemic, vigorous exercise of the type I do every day can cause heart problems too.
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Just a guess - Nocturnal Home HemoDialysis.....
I don't qualify for any type of home hemo, because I live alone and I have no partner to be around me when I would be dialyzing.
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I get epo if I'm below 11. When I first started on d I was at 5.0
My neph has no problems with putting me on epo.
Troy
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Reading about the 'bundle', which I assume is a new set of guidelines for USA public medicine, I forgot to add that the same idea exists in Australia...you need to get below 100 before your neph can prescribe free Aranesp.
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I was reading here about epo and seen where they are supposed to explain the meds pros and cons and have you sign a consent form. They didn't do that at D today. That explains the headaches I have been getting and the rash grrrrr they are going to kill me yet at that place. But good news I am going on a tour of a different D center across town to see what they got to offer hopefully better then what I am getting now. I noticed they been giving everybody in my section shots but not me they just stick it in my tubes. My question is am i supposed to sign a consent form and be explained all about epo? if so they are not doing it
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Today my clinic informed me that we have a new protocol for EPO...... and that their range is now 10-12.... and until I go down to below 10 I am not to take anymore EPO...... I have been taking 10000U twice a week and that amount has been keeping me at 11.1 Even though that is in the range I can not take the EPO because it is in the range.... I am not allowed to maintain my Hemoglobin count....as I have been for a year now....Its the new bundle program..... and they dont get paid for that anymore...so now it time to cut back....to earn more profits.... at the exspense of the patients...
I feel best at 11.0 when I get down to 10.0 or 10.3 or somewhere in the low 10 I feel tired all the time....
sadly I will again..... I will try to do something to get around this...... Some people dont do well in the lows 10..... I dont understand why we cant go by what normal levels are..... just because we have a illness doesnt mean we should not feel the best we can..... Why do they do this......so unfair..... next they will tell us that we can get IV iron any more..... we will have to take pills..... they will make us ....... They are controlling the quality of our lives..... CMS.....why why...... why.......
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Today my clinic informed me that we have a new protocol for EPO...... and that their range is now 10-12.... and until I go down to below 10 I am not to take anymore EPO...... I have been taking 10000U twice a week and that amount has been keeping me at 11.1 .. why.......
If you feel you function the best at 11 g/dl HGb, you can try to have your blood test done when you are well hydrated, it will easily drop your hemoglobin level by 0.5 g/dl. For example have your blood test done after a day of rest, when you have retained some fluid. I am not suggesting you should do this to beat the test, but that is what it amounts to.
Why you asked ? Because depending on age, there is a higher risk of mortality with higher erythropoetin levels, not to mention clotting problems with access and cardiovascular events.
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HB between 10 and 12. I use Cosmopher (iron)
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:thumbup; to ajusting Lab results......
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Today my clinic informed me that we have a new protocol for EPO...... and that their range is now 10-12.... and until I go down to below 10 I am not to take anymore EPO...... Its the new bundle program..... and they dont get paid for that anymore...so now it time to cut back....to earn more profits.... at the exspense of the patients...
It's not just a matter of "profits."
Epogen and Aranesp have been found to have dangerous side effects. This is the new FDA warning:
WARNINGS
INCREASED MORTALITY, SERIOUS CARDIOVASCULAR EVENTS, THROMBOEMBOLIC EVENTS, STROKE and INCREASED RISK OF TUMOR PROGRESSION OR RECURRENCE
Chronic Renal Failure:
* In clinical studies, patients experienced greater risks for death, serious cardiovascular events, and stroke when administered erythropoiesis-stimulating agents (ESAs) to target hemoglobin levels of 13 g/dL and above.
* Individualize dosing to achieve and maintain hemoglobin levels within the range of 10 to 12 g/dL.
Cancer:
* ESAs shortened overall survival and/or increased the risk of tumor progression or recurrence in some clinical studies in patients with breast, non-small cell lung, head and neck, lymphoid, and cervical cancers (see WARNINGS: Table 1).
* To decrease these risks, as well as the risk of serious cardio- and thrombovascular events, use the lowest dose needed to avoid red blood cell transfusion.
* Because of these risks, prescribers and hospitals must enroll in and comply with the ESA APPRISE Oncology Program to prescribe and/or dispense EPOGENŽ to patients with cancer. To enroll in the ESA APPRISE Oncology Program, visit www.esa-apprise.com or call 1-866-284-8089 for further assistance.
* Use ESAs only for treatment of anemia due to concomitant myelosuppressive chemotherapy.
* ESAs are not indicated for patients receiving myelosuppressive therapy when the anticipated outcome is cure.
* Discontinue following the completion of a chemotherapy course.
Perisurgery: EPOGENŽ increased the rate of deep venous thromboses in patients not receiving prophylactic anticoagulation. Consider deep venous thrombosis prophylaxis.
http://tinyurl.com/4rxjxwe
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Last blood test mine was 9.5, but then again I am still recovering from my 2 week bout in the hospital. Doc said he would raise my Epo. Kaiser likes us to be somewhere between 10 and 12, and raise or lower the Epo accordingly.
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I have been severely anemic for a long time my court is usually between 7-9 and my saturations as low as 4 I was called today to be told that they were 9 on this last blood draw. they give me I.V Iron and I take 20 of epo 3 times a week but as soon as the iron stops I drop right back down. I am always tired with no energy and latley find myself very depressed my Dr. is working on it so no complaints there but just tired of it all.
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I have the same problems, dyann and am also sick and tired of it.
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interesting and useful discussion. Gregory's haemoglobin is at 88 (8.8 US) and they want him back on aranesp. I gave him a shot tonight, we had a left over dose of it in the fridge. And came here looking for this thread, as I knew there was some discussion of the recommended range. Thanks for calming my worries.
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I don't get aranesp anymore. I haven't for awhile now, a few months. I seem to be doing good. My hemoglobin is around 113.
Sometimes I get liquid iron and I hate that. I get so darned constipated from it >:(
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My haemoglobins dropped to 79 and have now recovered to 125. Docs don't know why they went down or why they went back up. Am having another colonoscopy and gastroscopy to-day and am booking in for a camera gastroscopy. We'll see what they find.
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I've been running at 13/14 since my transplant. At least until last month. Mine bottomed out with the surgery and the complications, and of course the not really eating anything for a month.
I'm tired of puffing whenever I so much as do the laundry.
Wonder if I can beg my doc for a single dose of Aranesp?!
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I am EPO resistant so I take wild swings in my Hemoglobin levels. I was hospitalized last month when I dropped to 6.7, but usually manage to hold steady between 9 and 10. My doctor, the nurses and clinic manager are all very concerned about it. I've seen a hematologist and had a host of tests done, but I just don't respond well to EPO. Most people don't realize how different you feel when you are 9 compared to above a 10.
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I have had problems with being anemic since I was 12 years old. The first time there was any indication that something might be wrong was when I had just finished PE and my pulse was racing pretty fast and I didn't feel good. I was sent to the nurses office and she decided to let me lay down to let my heart rate go down since I just had PE. Well, it didn't go down so she called my mom and advised to take me to the doctor. Well, we lived in London at that time, which was in 1970, and our doctor would not let us come to his office for some reason and always made a house call when we needed to see him. He diagnosed me as being anemic and had prescribed these HORRIBLE huge iron pills that made everything I ate taste like iron.
When I complained about it, he said that I could do what they use to do in the olden days to treat anemia............... eat raw liver :o I took the iron pills ;D