My Days Without Hemoglobin

People often ask, "How are you feeling?" and I usually have no idea how to answer. "Tired" just doesn't cut it because it simply implies that I need sleep, and how I feel goes way beyond tired. I have found the best way to describe how I am feeling is to give examples, i.e. when I bend over to pick something up, I must be very cautious when returning to the upright position lest I get dizzy and bite it on the office floor. So, without further ado, a day in the life of a hemoglobin-less Dawn-Nicole.

On days I am off, I could easily sleep the day away. I have been known to sleep until 3 pm, get a bite to eat, and go directly to bed for the night. On days I work, however, I set my alarm for at least a half hour before I normally would. You would think this would be counter-productive, but I have to account for the numerous rest breaks I take while getting ready. When the alarm rings, I sit up slowly and give myself a few minutes to make sure I am able to stand. Then it is off to conquer the shower.

I'm not going to lie, showering is hard work. While most people look forward to a long, hot shower, it is easily one of the most dreaded parts of my day. Washing my hair is the worst, by far. The combination of standing and having my arms moving above my head is usually too much, and I find myself having to sit to do it. Yep, sittin' in the shower, that's what the cool kids are doing. Luckily, my hair doesn't require daily washings, so I have that going for me. After the shower, the rest of the getting ready process is smooth sailing. I don't bother with my hair, the shower has defeated me in that department. In the summer, I would just let it air dry and as it gets cooler, it will be ponytail city. Getting dressed is relatively painless, with just a few breaks to either sit or lay down. I generally dress in layers, though, because the hemoglobin helps regulate body temperature. That combined with my constant craving for chewing ice, and I am always freezing. So, I grab a sweater or two and I'm out the door.

My two main obstacles at work are my inability to focus and my impatience. I try to get anything important completed first thing, when my brain is sharpest. I have learned to work on various projects a little at a time - spend a few minutes on one thing, them move to another, and so on. Those of you who know me know this tactic goes totally against my character. I can't even eat more than one thing on my plate at a time. If I don't do this, however, I find myself getting very easily distracted and/or frustrated. Impatience and frustration are big issues for me. Without the focus I usually have, I have a hard time articulating my thoughts, finishing tasks, or even a sentence for that matter. Factor in that I am just so tired of being tired and I am left with a very long day at work. But, I plow through with a steady supply of caffeine and ice chips, and after what feels like forever, I head home.

On days I work, that is pretty much all I can manage. Once home, I usually contemplate doing housework, but settle for scooping the kitty litter (it is a very small apartment!). Anything else is a sweet bonus. Dinner is always something I have picked up on the way home, there's no way I'm wasting precious energy on cooking. I used to watch a movie during dinner, but now it is TV shows on Hulu. I clearly don't have the patience for movies anymore. I tried to watch Sherlock Holmes the other night which resulted in me yelling at Robert Downey Jr. to get on with it already. On the plus side, I'm finally getting to see all the shows I have been hearing I HAVE to see. Bedtime is next, and it is a rare occurrence for me to be awake past 8 pm.

There you have it...how I am feeling on any give day. Basically, it is an exercise in rationing my energy and prioritizing what needs to be done now and what can wait a month or two. While I am fortunate to even be doing any of this, I still miss being able to walk half a block without feeling like my heart is going to explode, turning my head without feeling like I may pass out or simply hanging out with friends after work. So, if you have any spare red blood cells laying around, feel free to throw some my way!

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.