I've only actually driven myself to UCLA and back again twice since my transplant, so I wasn't up for an ordeal. So I rescheduled. I've been avoiding seeing the doctor and have been seeing the NP instead, and she has insisted that I need to see the doctor at least every third appointment....so it looks like its almost a month between appointments for me this time, as, what with holidays and such, the doctor didn't have any openings until the end-ish of February. That's okay. I do pretty okay on my own most of the time. Oh, and we got eight inches of snow, so I'm glad I had the foresight to cancel early.
I've been undergoing testing extravaganzas with my dexa bone scan - which was ordered to check for osteoporosis - since I have been on prednisone for so long and it can cause bone loss. Came back all good. I've had an eye exam to make sure that my eyes are still producing tears. You know how they test that? They shove little litmus paper looking things in each one, tell you to close your eyes, and see if they water, with a foreign object stuck under your eyelids for five minutes. Seriously? Seemed a bit barbaric. Mine watered adequately.
They also gave me an eye exam (yay 20/20 vision in both eyes), and dilated my pupils, which I wasn't counting on. The only other time that Keith didn't drive me to UCLA, and they dilate my freaking eyes! I came out of the office, and I'm like, well, this is okay, I can still see okay. And then I tried to look at my phone to see how long eye dilatation lasts. Oh hey, up close I can't read or see a fucking thing. Not so good for driving. Not to mention the fact that I look at myself in the rearview mirror, and I look like an anime character with huge blown out black pupils. "Oh no, officer, I'm not on any drugs, I promise." Yeah right. So I ended up sleeping in my car in the parking garage for a few hours before getting on the road. The decision to drive myself was a poor choice on my part, I've just been trying so hard to give Keith some semblance of a life back, instead of having to be my chauffeur all of the time. Bad idea this time around.
Lets see, I also had an x-ray on my left ankle, as, no joke, I feel like it is sprained or broken most of the time. No fractures or any sign of significant osteoporosis. So it just hurts. Which sucks. I think my doctor put it into words best the last time I saw her: my CGVHD can't be measured by tests, it's mostly just measured by the way I'm feeling, which is so hard for me. I want something that can validate it. I want something, a test result, something that I can point to and say, "Look, see, the measure of my pain is right there. It's a six or seven on the Richter scale, and this proves it." Without scientific evidence, I feel so invalidated. Keith was helping my put a TENS unit on my foot a few weeks ago, and noticed that it was incredibly swollen compared to the other foot. Everyday it's incredibly swollen for no flipping reason, except my donors cells attacking my own, but I shove it in my boot, and carry on anyway. Its entirely frustrating. And it's not getting any better.
One perk to keeping on keeping on: I did get to see these guys, up close and personal on one of my walks a couple of weeks ago, so that was neat.
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| Wild Burros |
They tested my chimerism again. That's the test that tells them what percentage of my blood is my donor, and what percentage is my own. The me that used to be is gone. I'm all donor. Which is good, I guess. After all, that was the goal. Oh, and no CML. The BCR/ABL test came back completely negative. Excellent.
What is not excellent is the fact that my hemoglobin/hematocrit continues to be high. I think that my doctor abandoned the idea that it is high due to living at high altitude, as my erythropoietin level is low normal. Erythropoietin is the hormone that tells your body to make more red blood cells. Generally if your body thinks that you are oxygen deprived - because you live at high altitude, or you have sleep apnea - your erythopoietin level will be higher, as it is sending a signal that more red blood cells are needed to carry oxygen. Covertly, my doctor tested me for the JAK2 mutation. It came back negative. Why is this significant? My doctor wanted to rule out a blood disorder, known as Polycythemia Vera. Ninety percent of people with polycythemia vera have a JAK2 mutation. I do not. Just to be ultra sure, I had a bone marrow biopsy at my last appointment. My NP emailed me to let me know that the tests were normal, but I haven't had a chance to discuss the results with the doctor yet. So at this point I have polycythemia of unknown origin, which means that I have an elevated red blood cell count, or more accurately, elevated hematocrit, and they don't know why.
Having a higher than normal red blood cell count is not ideal, because it makes your blood thicker, making you more prone to blood clots, which could lead to heart attack or stroke. So, thick blood equals bad. So even though they don't know why I have it, they still may have to treat it, and one of the most common treatments, is - my least favorite - phlebotomy. FML. It is absolutely ironic that less than five years ago, my body couldn't produce enough red blood cells to keep me going, and I had to have blood transfusions every four to six weeks, and now it's making so many that they are going to have to bleed me. Is this some kind of cosmic joke on me, or what?
I'm down to 4mg of prednisone, and I'm thinking about taking myself down to 3mg this week. The fatigue is still ridiculous. Daily naps are still needed, or else I'm falling asleep by 8pm. The tacro shakes are back a bit, and my levels have been all over the place, and since I'm on a relatively low dose, they just leave that alone for now. I asked when I can get my measles (MMR) immunization, since there has been another outbreak, close to UCLA, and was told that they don't give them until I'm off of immune suppression completely for at least a year. With my GVHD joint pain flares, that doesn't look likely any time soon. I've been getting headaches, which is unusual for me, but with the litany of issues I have piled on top of the numerous pills that I take, it's almost impossible to isolate any one cause. So, I treat them by swallowing more pills. (Ibuprofen.)
Hair is still bad. It looks like I left it under the iron too long. The front is just so damaged looking. Still taking biotin, and I think that its beginning to grow a little longer, it just does not look any healthier, even though I do deep conditioning treatments a couple times a week.
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| Even frizz ease cant help this mess |
