The Hobgoblin Known As Hemoglobin

[BobN]

June 12, 2013

One of the many things that your typical dialysis patient obsesses about is their hemoglobin level, something that a non-patient probably isn't even aware exists.

The reason we think about it so much is that when our hemoglobin gets low, which happens frequently, it sucks big time.

(Boring Primer Alert)

You see, this is a problem for people with kidney failure because the kidneys produce a hormone called erythropoietin, which is required for red blood cell production.  Hemoglobin is a protein found in red blood cells that helps transport oxygen throughout the body.

So, when your kidneys fail, the whole process goes to crap.

Low red blood cells, or anemia, low hemoglobin, poor oxygen within your cells.  And a generally poor attitude toward anything involving movement.

Typically, this condition is counteracted in dialysis patients with injections of Epogen (or Epo), which is the man made form of erythropoietin.  Epo can be infused during treatment for in-center patients.  Home patients have to give themselves injections.

(Oh boy, another needle!  Just what we need.)

Dialysis centers are very careful about the amount of Epo they gave you, first, because two much can also be bad news, and second, because the drug costs about a zillion dollars per ounce.

Recently, my hemoglobin levels were too high, so I was instructed to reduce my Epo dosage for a couple of weeks.  At the end of the period, of course, my level plummeted and I basically found out how a used dishrag feels.

It was tiring for me to walk from the den to the utility room, a total expanse of maybe ten feet.  I made the mistake of trying to play tennis in my Senior Men's League, and was a useless slug out on the court.

When I reported these symptoms to my in-center contact, they upped my Epo and I was back to my usual energetic self.  I felt like Popeye after popping a can.

Of course, it was probably too late to repair my relationship with my tennis doubles partners, who, understandably, tried to subtly avoid teaming with me for a couple of weeks until I proved myself worthy again.

So, patients, if suddenly a simple act like blowing your nose makes you want to lie down for a while to recover, you might want to check your hemoglobin.  It goes a long way towards explaining energy levels in dialysis patients.


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Edited: Added full text - okarol/admin

[KatieV]

I'm on a lot of EPO, but my hemoglobin is still at 10 (clinic wants it at 11). 

Something else to be aware of is your iron level.  All the EPO in the world won't help if you have low iron stores, which mine were recently.  Since I was at the clinic already to get my catheter declotted (will my problems never stop!!!), I got a big dose of iron as well.

[Grumpy-1]

Bob  what Hemoglobin level do you try to keep?  I feel much better if I'm at 11 or above (but less than 12) BUT the neph won't let me get that high.  They are following the FDA guidelines (and I repeat GUIDELINES) that we should be below 10. And since as you say EPO cost as much as your house, the insurance folks aren't too happy about forking out $$$.  So, long story short, they let my level drop to 8.2 before doing anything and it has taken a month + to get it back up to 8.9   Again, as you say "feel like a dishrag" most the time.  Grumpy

[Henry P Snicklesnorter]

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[Grumpy-1]

KatieV  Yea - they are pumping iron into me each session as well.  Grumpy

[Joe]

So true Bob! The limp rag analogy is so appropriate. Hate it when my Hemoglobin count goes down. For some reason, I react quickly and radically to changes in my Epo dosages and when I get low, they give me iron to give the Epo something to work on. It's a viscous cycle.

[noahvale]

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