FAQs:
1. Is detectivery even a word?
answer: Yes. It is the act of being detectiverous.
My investigative approach this time involved the novel methodology of "asking my doctor, who is trained in such things, what she thinks." While my WBC continue to wildly see-saw all over the place (last week, 5.1; this week, 3.2), my red blood counts continue to go down slightly. I posed this scholarly question to my doctor last week, "What's the deal with my red blood cells?" She told me that the kidneys produce a hormone that stimulates the production of red blood cells. Since my kidney function has been declining over time due to cyclosporine toxicity and my apparent inability to drink enough water (3.5L/day not being "enough"), my RBC production has gone down (as well as hemoglobin production).
Well. I took this information and summarily cast it aside.
So this week, when RBC counts still sucked, I freaked out in the customary manner. A little Googling lead me to some sort of kidney website which again detailed the relationship between anemia and kidney function. Due to production of a hormone called EPO on behalf of the kidneys.
Oh. Right.
So it seems that my doctor, the so-called "Head of the UCDMC Bone Marrow Transplant Program," might just know what she is talking about...that is, IF! her information checks out with my Excel spreadsheet when I graph RBC v. creatinine levels and determine that there is indeed an inverse relationship (creatinine levels increase as kidney function decreases, I can't remember if I have mentioned that). Until then, the saga continues. Well, for me, anyway. Everyone else seems pretty ready to put the whole thing to bed. But I leave you with this: I am now scheduled for a urinanalysis and ultrasound to check out whatever needs to be checked out about the kidneys. So the case is not exactly closed because there could still be some other nefarious thing!! Even if my "doctor" says these measures are "routine." Hmph.
Meanwhile, most other things are going well here. Hope they are where you are too!
Wednesday, August 24, 2011
Wednesday, August 10, 2011
Back-of-the-napkin amateur medical detectivery
First of all, a disclaimer. I am not a doctor. At least, not the kind that actually helps people. So all of the following is probably wrong, but it is enormously satisfying to me and it's my blog.
I figured if I didn't update now, I probably wouldn't update until October or something, so here goes. I had my blood draw this morning. My white blood cell count went up to 3.3...still low but fairly normal (although below my own average) for me. Neutrophils almost doubled since my last blood draw and are well within the ordinary person's normal range. Hell, I may have more neutrophils than you at the moment. Platelets are low-ish, but normal for me (although, again, below my average). The mystery that remains is this: how on earth I spent 3 days frolicking around at 8500-9000 ft with a hematocrit of 28%. Low normal for a healthy person is 34%; below 27% and I get a transfusion. So that is still oscillating downward, along with all my red blood counts (hemoglobin and red blood count as well). I guess stunning scenery can counteract the effects of anemia.
I took a minute to contemplate all my data in my handy dandy spreadsheet and graphs and a couple of things stood out. First, my white blood cells regularly peaked at the beginning of each month since January (to between 5 and 8), then declined throughout the month to around 3. I'm guessing this may be due to the intrathecal chemo I received at the end of each month, followed by a short course of steroids, which inflates blood counts (releases your blood cells out of the marrow into the blood stream). This cycle stopped in March, when I stopped the chemo. I had another WBC peak in mid-May, when I got sick with a cold. I could assume that at this point, WBCs were flooding out of the marrow to do their thing with the virus. Go team! Counts then went back to the low 3s. They started to decline again when- you guessed it (or perhaps didn't guess it at all)- I started to taper prednisone, my other steroid dose. How about that? Neutrophils follow the same pattern.
The second thing I noticed was that all my blood counts crashed and my kidney number got awful soon after I got pneumovirus. I guess that sometimes happens with viruses, which I realize is the opposite of what I said earlier. But that's the beauty of the human body! Its data can fit any explanation you want it to. Especially when you have a rigorous sample size of 1. I currently have no hypothesis for the RBC issue but I intend to look into it.
Anyway, that's that. See you hopefully a few times in September- that's when I have my one-year follow-up in Seattle. Let's not talk about that just yet.
I figured if I didn't update now, I probably wouldn't update until October or something, so here goes. I had my blood draw this morning. My white blood cell count went up to 3.3...still low but fairly normal (although below my own average) for me. Neutrophils almost doubled since my last blood draw and are well within the ordinary person's normal range. Hell, I may have more neutrophils than you at the moment. Platelets are low-ish, but normal for me (although, again, below my average). The mystery that remains is this: how on earth I spent 3 days frolicking around at 8500-9000 ft with a hematocrit of 28%. Low normal for a healthy person is 34%; below 27% and I get a transfusion. So that is still oscillating downward, along with all my red blood counts (hemoglobin and red blood count as well). I guess stunning scenery can counteract the effects of anemia.
I took a minute to contemplate all my data in my handy dandy spreadsheet and graphs and a couple of things stood out. First, my white blood cells regularly peaked at the beginning of each month since January (to between 5 and 8), then declined throughout the month to around 3. I'm guessing this may be due to the intrathecal chemo I received at the end of each month, followed by a short course of steroids, which inflates blood counts (releases your blood cells out of the marrow into the blood stream). This cycle stopped in March, when I stopped the chemo. I had another WBC peak in mid-May, when I got sick with a cold. I could assume that at this point, WBCs were flooding out of the marrow to do their thing with the virus. Go team! Counts then went back to the low 3s. They started to decline again when- you guessed it (or perhaps didn't guess it at all)- I started to taper prednisone, my other steroid dose. How about that? Neutrophils follow the same pattern.
The second thing I noticed was that all my blood counts crashed and my kidney number got awful soon after I got pneumovirus. I guess that sometimes happens with viruses, which I realize is the opposite of what I said earlier. But that's the beauty of the human body! Its data can fit any explanation you want it to. Especially when you have a rigorous sample size of 1. I currently have no hypothesis for the RBC issue but I intend to look into it.
Anyway, that's that. See you hopefully a few times in September- that's when I have my one-year follow-up in Seattle. Let's not talk about that just yet.
Tuesday, August 9, 2011
Crap, is it August already??
Well, guess I missed July! Oops. All kinds of stuff happened. Too bad you don't get to hear about most of it. I will tell you this: I got pneumovirus. It went away.
Anyway, we just got home from a lovely camping trip at the edge of the Mokulumne Wilderness. It was Luna's first, and thus a first for all of us as a family. There were amazing wildflowers, ginormous trees, new birds, bats, and lots of hiking. It was a fantastic, if slightly mosquito-y good time. Luna was completely beside herself. Every time we turned around, she was scaling granite boulder piles, or climbing on fallen trees, or was in the middle of a meadow picking flowers, or was climbing up a hill off-trail. This shows that a.) she was clearly born to be outdoors, and b.) we should probably be more attentive as parents, so we are not always pulling our daughter off the top of boulders, out of trees, etc.
Apparently, there is a way to get a fatigue-plagued, low blood-count-having, drug-addled, kind-of-complainy transplant patient to physically push herself a lot further than she has in a long time. I guess all I needed was an interpretive sign cheerfully posted at a trailhead in camp. The sign provided information on a couple of suggested hikes, the easiest being described as a moderate, 1.5 mile hike through cool pine forest and across a meadow of wildflowers, ending at a high alpine lake. The other suggested hike was one I had hiked before while backpacking (in, obviously, healthier times). I remembered it as steep, exposed, and long; and naturally chose the first hike. Brett, Luna, Topo and I set off triumphantly.
Now, once you have me on a trail, you really just have to rely on my stubbornness from a former life to keep me going. Even if the trail is longer than the cheerful sign had indicated (how is that even possible?! The Forest Service could have figured the mileage on their personal iPhones, for Pete's sake). Even if it is steeper than previously supposed. And more exposed. And climbing up to over 9000 ft in elevation. Keep in mind, I haven't even walked more than a couple of miles at sea level on flat ground in at least a year. And here I am on this mountain, saying, "Let's just go a little further until we can see where the trail goes." "Let's just go to that ridge and see if we can see the lake." "We've come so far already. Let's just keep going until we get there." By the time we finished that 5 mile hike, I must have been completely out of my mind. Because Luna was falling asleep, I suggested another hike to keep her awake. So we hiked up another trail looking for an old mine, and when we didn't find it, I suggested, "Let's just go a little further and see what the trail looks like." "Maybe it's off the trail, and we should just climb up this rock face here and see what's on the other side." "Well, it's not here; let's climb up and peek over that ridge." Brett was kind enough not to point out that I had no business doing any of this. And guess how I felt afterward.
GREAT! I mean, so I went to bed at about 7:30. So I am sunburned (I took every precaution, except, you know, "staying out of the sun"). So my legs are a little shaky. I feel like if we could have just stayed up there for say, a month, I could have kept going and going until I became practically my old self...or rather, another new version of my current self. Jessie 2.0. One with fewer bugs and less likely to crash.
But allow me to temper all this good news with my characteristic worrying. Right now, I'm starting to worry about my blood draw tomorrow. In July, the month that Blog forgot, my kidney function was getting progressively crappier. Then, at a couple of blood draws, all my numbers shot south (and I know that this was a dramatic drop because I recently put all my blood count numbers into an Excel spreadsheet and graphed them! There, I said it! I also added trendlines and R-squared values! Laugh all you like! I already know I'm a nerd!). This was concerning to all, but my doctor was pretty sure it had to do with medications. So she cut all my dosages for several days to see if my numbers recovered. And they did, a little. Also, I wound up with a rash covering almost my whole face and scalp that I was pretty sure would never go away...until it did about 2 days later. I am still pulling large patches of dead skin out of my hair periodically (yeah, guess I really do need need those stupid pills after all).
Since the meds seemed to be the culprit, my dosages were re-upped and at the next blood draw, my blood counts maintained the same level, except my white blood cells and neutrophils. They dropped again (you may remember my neutrophils from past blogs about me worrying). With low neutrophils, I'm even more susceptible to infections than I normally am (normal being "pretty susceptible"). So I have another blood draw tomorrow, a week earlier than I'm usually scheduled. My doctor is calling Seattle about the whole thing. My worries include the following: that my neutrophils will be so low that I'll be instructed to be super-extra careful again like the post-transplant days, and that something more nefarious than medications is messing with blood counts (something that begins with an "L" and really, really sucks).
To play the bright side for a moment, I'm glad we took this camping trip before my doctor could tell me not to for whatever reason. Turns out, it is pretty hard to worry about anything when looking at an alpine lake just as blue as anything you've ever seen, surrounded by snow-covered peaks and the sweetest-smelling pines while sitting with your super-awesome husband, super-cute kid and trusty dog. So that was good.
Well, all this writing is getting my mind cranking up about tomorrow again, and frankly, I'm not ready to think about it yet. So I am abruptly ending this post here. I hope everyone is really enjoying the summer, wherever you are!
Anyway, we just got home from a lovely camping trip at the edge of the Mokulumne Wilderness. It was Luna's first, and thus a first for all of us as a family. There were amazing wildflowers, ginormous trees, new birds, bats, and lots of hiking. It was a fantastic, if slightly mosquito-y good time. Luna was completely beside herself. Every time we turned around, she was scaling granite boulder piles, or climbing on fallen trees, or was in the middle of a meadow picking flowers, or was climbing up a hill off-trail. This shows that a.) she was clearly born to be outdoors, and b.) we should probably be more attentive as parents, so we are not always pulling our daughter off the top of boulders, out of trees, etc.
Apparently, there is a way to get a fatigue-plagued, low blood-count-having, drug-addled, kind-of-complainy transplant patient to physically push herself a lot further than she has in a long time. I guess all I needed was an interpretive sign cheerfully posted at a trailhead in camp. The sign provided information on a couple of suggested hikes, the easiest being described as a moderate, 1.5 mile hike through cool pine forest and across a meadow of wildflowers, ending at a high alpine lake. The other suggested hike was one I had hiked before while backpacking (in, obviously, healthier times). I remembered it as steep, exposed, and long; and naturally chose the first hike. Brett, Luna, Topo and I set off triumphantly.
Now, once you have me on a trail, you really just have to rely on my stubbornness from a former life to keep me going. Even if the trail is longer than the cheerful sign had indicated (how is that even possible?! The Forest Service could have figured the mileage on their personal iPhones, for Pete's sake). Even if it is steeper than previously supposed. And more exposed. And climbing up to over 9000 ft in elevation. Keep in mind, I haven't even walked more than a couple of miles at sea level on flat ground in at least a year. And here I am on this mountain, saying, "Let's just go a little further until we can see where the trail goes." "Let's just go to that ridge and see if we can see the lake." "We've come so far already. Let's just keep going until we get there." By the time we finished that 5 mile hike, I must have been completely out of my mind. Because Luna was falling asleep, I suggested another hike to keep her awake. So we hiked up another trail looking for an old mine, and when we didn't find it, I suggested, "Let's just go a little further and see what the trail looks like." "Maybe it's off the trail, and we should just climb up this rock face here and see what's on the other side." "Well, it's not here; let's climb up and peek over that ridge." Brett was kind enough not to point out that I had no business doing any of this. And guess how I felt afterward.
GREAT! I mean, so I went to bed at about 7:30. So I am sunburned (I took every precaution, except, you know, "staying out of the sun"). So my legs are a little shaky. I feel like if we could have just stayed up there for say, a month, I could have kept going and going until I became practically my old self...or rather, another new version of my current self. Jessie 2.0. One with fewer bugs and less likely to crash.
But allow me to temper all this good news with my characteristic worrying. Right now, I'm starting to worry about my blood draw tomorrow. In July, the month that Blog forgot, my kidney function was getting progressively crappier. Then, at a couple of blood draws, all my numbers shot south (and I know that this was a dramatic drop because I recently put all my blood count numbers into an Excel spreadsheet and graphed them! There, I said it! I also added trendlines and R-squared values! Laugh all you like! I already know I'm a nerd!). This was concerning to all, but my doctor was pretty sure it had to do with medications. So she cut all my dosages for several days to see if my numbers recovered. And they did, a little. Also, I wound up with a rash covering almost my whole face and scalp that I was pretty sure would never go away...until it did about 2 days later. I am still pulling large patches of dead skin out of my hair periodically (yeah, guess I really do need need those stupid pills after all).
Since the meds seemed to be the culprit, my dosages were re-upped and at the next blood draw, my blood counts maintained the same level, except my white blood cells and neutrophils. They dropped again (you may remember my neutrophils from past blogs about me worrying). With low neutrophils, I'm even more susceptible to infections than I normally am (normal being "pretty susceptible"). So I have another blood draw tomorrow, a week earlier than I'm usually scheduled. My doctor is calling Seattle about the whole thing. My worries include the following: that my neutrophils will be so low that I'll be instructed to be super-extra careful again like the post-transplant days, and that something more nefarious than medications is messing with blood counts (something that begins with an "L" and really, really sucks).
To play the bright side for a moment, I'm glad we took this camping trip before my doctor could tell me not to for whatever reason. Turns out, it is pretty hard to worry about anything when looking at an alpine lake just as blue as anything you've ever seen, surrounded by snow-covered peaks and the sweetest-smelling pines while sitting with your super-awesome husband, super-cute kid and trusty dog. So that was good.
Well, all this writing is getting my mind cranking up about tomorrow again, and frankly, I'm not ready to think about it yet. So I am abruptly ending this post here. I hope everyone is really enjoying the summer, wherever you are!
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