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The Hemoglobin Balancing Act

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  • The Hemoglobin Balancing Act

    ESRD patients quite frequently suffer from anemia - insufficent red blood cells, owed to the kidney's inabilty to produce the enzymes that signal the body to produce red blood cells. This condition used to be treated with blood transfusions and is now treated with drugs like Epogen, a synthetic erythropoietin, also known as EPO, which is a glycoprotein hormone that controls erythropoiesis, or red blood cell production. You may wonder why your respective dialysis clinic monitors your hemoglobin level so closely as well as closely controls your use of Epogen.

    As long as your hemoglobin levels stay within 11.0 and 12.0, your clinic is happy, because the CMS (Centers for Medicare and Medicaid Services) are happy. Epogen is quite expensive and the CMS doesn't want to pay for any more than what is required to maintain a hemoglobin level under 12.0. If your hemoglobin exceeds 12.0 in your lab work, the CMS will eventually take note and take action.

    The hemoglobin level for a "normal" non anemic individual is 13.0 to 17.0 g/dl. Lance Armstrong and his blood doping teammates on the Tour-du-France pumped enough EPO into their blood streams to sport hemoglobin levels in the high teens, and with it the increased endurance from the additional oxygen transporting capabilty of all those red blood cells.

    I'm certain that if we dialysis patients were able to maintain hemoglobin levels even in the 13.0 range, we'd feel like a million bucks. But that is not likely to happen. A chief contributor to a dialysis patient feeling tired is anemia, or more specifically, a hemoglobin level that is purposely managed to fall below that of a "normal healthy" person. Another more functional reason beyond the direct dollars and cents of Epogen treatment is the higher the hemoglobin level, the denser the blood with red blood cells and the greater the likelihood of clotting the filter on the dialysis machine.

    I started HHD training and hemodialysis with a hemoglobin level of 9.0. Oddly, I didn't tire any more easily than I do with a level of 11.5. During my first several weeks of training and dialysis, I was given 5000 IU of Epogen 3X weekly via IV. This dose was reduced as my hemoglobin levels increased. I recall doses of 3000 IU 3X weekly and then twice monthly, along with IV Iron until sufficient iron stores were built up in my blood sream and my hemoglobin reached into the 11.'s. As soon as I reached or exceed 12.0, the Epogen was stopped. Thanks to some residual kidney function (PKD) I went a few months with little to no Epogen.

    Roughly one year after starting HHD, my hemoglobin has stabilized between 11.0 and 12.0 at an Epogen dose of 2000 IU once per month. Invariably, if my hemoglobin drops below 11.0, my clinic will order a mid month 2000 IU dose of Epogen and my hemoglobin will rocket up to the high 11.0's, at which point I will cease the mid month dosing.

    Dosing of IV Iron should coincide with Epogen dosing as it is the Epogen that stimulates the production of red blood cells, which in turn place demands for Iron. It makes little sense to keep pumping a patient full of IV iron if the patient is on a low dose of Epogen - they will never use the Iron, and it will simply accumulate, waiting for red blood cell production to be used.
    Last edited by stumpr54; 09-10-2014, 03:13 PM.

  • #2
    So, stumpr54, when I questioned my clinic nurse as to why her (or any other middle aged female with functioning kidneys) hemoglobin is considered normal at 130 to 160, why is it acceptable for mine to be 106? She told me that the lower acceptable level is to do with blood pressure or something... I'm not sure I completely understood what she was saying, but thought she was suggesting that higher levels of hemoglobin (achieved by EPO injection) would somehow cause an increase in blood pressure. It didn't seem entirely logical to me, as my hemoglobin was 135, a few months ago... Is this because it was 135 naturally, as opposed to with help from EPO? Or...is she just evading my question because Medicare won't pay for the injection until I need it to stay alive, rather than just to "feel better"? Honestly, I currently have the same question about dialysis...I do CAPD (started July 2014) with the plans to switch to APD, as soon as possible; however, am currently cut back to one exchange per day (at night). I started on the typical 4 exchanges per day schedule and was decreased to 3 per day, in August, based on very good scores on my Adequest test. In September, I was cut back to 1 per day (at night) because I had a leak and needed to decrease the pressure on the abdomen, during the day, to allow it to heal. I was lucky, as most people would have had to go on hemo but, because of my high Adequest score and residual function (PKD), I was able to just cut to 1 per day, instead. The issue I have, is that I don't feel nearly as well as I did doing full dialysis, the surgeon has seen my tests, from the leak/hernia, and had given the go ahead to resume dialysis (back in October). Supposedly, though, my blood work continues to indicate that I'm "healthy" enough to continue on just 1 exchange per day. I've questioned, specifically, whether it's an issue with Medicare requiring my blood work to indicate that dialysis is necessary to keep me alive or actually living, but haven't really had an acceptable answer. I've heard denials but I've not really been given an alternative explanation that makes any sense to me. One doctor said something to the effect that "why would I want to do all those exchanges, when they're not necessary?" (Read the following with a tone of sarcasm...) I suppose, referring to the tremendous inconvenience of having to connect, and then disconnect, catheter to and from bag three extra times per day - taking up about 10-15 minutes, total, out of my day. (I carry my drain bag in a shoulder bag with a really long strap and hang my fill bag from hooks all around my work place/home, so the only extra time, taken out of my day, is the few minutes it takes to connect and disconnect at beginning and end of each exchange.)
    Sorry for the very long post...I guess I'm feeling a bit cynical... Any thoughts?

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    • #3
      Hello DanCars,

      I can speak to the hemoglobin issues and not to the PD issues regarding exchanges, health and Medicare. I am an HHD patient with PKD and chose HHD and hemodialysis because of my enlarged kidneys, a history of hernias, the general absence of abdominal space for PD fluids and a general distain for anything foreign to my body, e.g. the PD abdominal port.

      The numbers you cite for hemoglobin are foreign to me. Hgb, or hemoglobin or concentration of red blood cells is measured in g/dl and the normal range is 13.0 to 17.0. Studies of dialysis patients have indicated that levels above 12.0 cause a significant increase in the risk of a cardiac event, e.g. arrest. I would suspect that the higher concentration of red blood cells naturally increases the risk of a clot that would reach the heart. This is principle reason why Medicare will not support/pay for Hgb levels higher than 12.0.

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      • #4
        Originally posted by stumpr54 View Post
        The numbers you cite for hemoglobin are foreign to me. Hgb, or hemoglobin or concentration of red blood cells is measured in g/dl and the normal range is 13.0 to 17.0. .
        Oh, sorry, in Canada hemoglobin is reported in g/L, so my level of 106 would "translate" to 10.6...

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