My Time Warp

I would love to say that this blog post thoroughly details my amazing version of the best number in "The Rocky Horror Picture Show," but alas, it does not. Instead, it will run the risk of boring the crap out of all of you by chronicling the past four months of the ever-frustrating state of my hemoglobin levels.

When I left off, my red blood cells were on the move, in a good way finally, and by the end of May, they had reached a normal level of 12.6. I was feeling fantastic, but apparently, as soon as you are feeling human again is the perfect time to start adjusting the medication that made it all happen. It turns out that 12.6 is deemed too high for doctors and for insurance companies who, of course, won't pay for the Epogen when the hemoglobin reaches a certain number. Therefore, to keep in compliance with protocol, I was ordered to stop the Epogen completely for two weeks and then recheck the blood. Lo and behold, I continued to amaze and baffle Dr. Cool Whip and my BFF Denise when the hemoglobin actually increased to 12.8. It was then back to our old friend, Protocol, who said no Epogen for another month. Another month?!

Disclaimer: The following is a diatribe/rant on how I feel about protocol. If you are currently satisfied with the state of our health care system and/or health insurance, feel free to skip ahead to the next paragraph.

Does anyone else fail to see the logic in this?!?! It took almost 8 months of Epogen use to get my numbers to an acceptable level. Just because it was now normal does not mean my kidney is going to magically start working on its own and become a red blood cell-producing machine. Cutting back to a smaller dose or decreasing the frequency would have made much more sense. This little exercise in Hemoglobin Roulette demonstrates to a tee why I feel protocol has no place in the process of treating patients. Diseases, maybe, but each patient is different and can not be treated by following a simple and archaic chart: if A happens, then follow steps B and C. Every person responds to medication differently, manifests different symptoms, or even has very different pain thresholds. Not only is relying solely on protocol irresponsible, it also puts patients like me right back where I started...with a hemoglobin of 8.8.

While I wasn't shocked by that number, I was completely frustrated, especially when the "solution" was the start the Epogen back up at 100 mg every other week. Umm, correct me if I'm wrong, but I'm pretty sure we got absolutely no response with this dosage in the past, right? My argument was quickly shot down by protocol (grr.), but my hemoglobin had my back by dropping to 7.2 in those two weeks. And, voila, I was back to 100 mg every week, just like that.

I went back through my calendar and lab results and have determined that last time it took between 6 and 8 weeks at this dose for the red blood cells to start coming back up. I've been at it now for three weeks and currently have a hemoglobin level of 6.2. Can I hold on for another month and avoid a transfusion? Only time will tell.