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I'm delighted to say that my post What's In A Name? was included in second round of the new blog carnival for, by & about patients, Patients For a Moment, started by Duncan Cross.
For those who aren't familiar with blog carnivals, they are (usually weekly) collections of posts by various bloggers on a specific topic. There's a number of medical blog carnivals out there (my favorite is Grand Rounds). You submit yourself and the host of that carnival decides whether to include you. Some hosts include all submissions, others sometimes pick and choose what they consider are the best ones for their theme or topic.
I've been a little shy about submitting my posts to carnivals in the past, partly because my blogging is usually more about what's going on in my life than taking more of a step back to look at issues.
Anyway, there's lots of great reading in this blog carnival, so if you haven't already seen it, please take a look!
What is it with me and weird blood test results that don't seem to have much signifiance?
The jury's still out on this one, so we'll see what my rheumatologist does with it.
But the hematologist called me this evening with the good news that I'm not going to bleed to death. (I kind of knew that already.)
I am among 1 to 3 percent of the population that has a weird antibody that causes an abnormal test result on the typical test used to check clotting.
Dr. D called it a "lupus inhibitor," which is a bit of a misnomer because apparently "lots" of people without lupus have it. (Lots, of course, being fewer than 3 percent of the population. The Lupus Foundation says about half the people with it do not have lupus.)
Ironically, people with this antibody that makes it look like they don't clot properly are more at risk of thrombosis (blood clots that can lead to a stroke or embolism, etc.).
Turns out this might also explain my miscarriages a few years ago, if the heart-shaped uterus wasn't enough to cause them.
Anyway, you can read more about this at Wikipedia here or at the Lupus Foundation page here.
So I don't think that this will help my rheumatologist assign me a lupus diagnosis. I don't know if I want one ...
But I'll be calling his office tomorrow to alert him to this latest development. I'm also hoping to get copies from the hematologist's office of all the lab results of the tests he ran, which I'll post here to share.
Seems like I've seen a ton of doctors lately, and I don't think I've updated on all of them. So here's a little roundup of what my most recent medical stuff has been:
- Dermatologist: Biopsy of weird white bumps on knee scar came back as secondary milia, pretty much the best possible result.
- Cardiologist: Follow-up visit on 6/22 was pretty normal. Residents apparently persuaded cardiologist to recommend a heart monitor that I will wear for a week to see what (if anything) is happening heart-wise when I faint and/or feel close to fainting. (I have far more close calls than actual loss of consciousness.)
- Hematologist: Blood drawn June 19. Called to check on results June 24. Nurse said doctor had to sign off on results but "they confirm your blood is thin." The remainder of the tests he ordered were various autoimmune coagulation tests, which she described as "pretty esoteric" and said she couldn't interpret them. Had hoped to get call from doc yesterday, but no such luck. Hopefully next week.
- Internist: Visited 6/23 with long list of things to discuss, including increased joint pain, fatigue and return of hair loss. She ordered more blood work, including cortisol test, thyroid, and iron levels.
- Neurologist: Playing phone tag but she left voice mail that EEG was normal and lumbar puncture did not show O-bands, which would have been a sign of multiple sclerosis. Only 50 percent of MS patients have O-bands in their spinal fluid, so it doesn't entirely rule out MS, but she's not leaning towards thinking that's my mystery illness. I'm scheduled to see her again at the end of July.
Phew. That's a lot of stuff!
I got distracted and failed to call the hospital to set up an appointment to get the heart monitor. I'll have to call on Monday and see when they want to do that.
Which is worse: Having an invisible chronic illness that takes months or years to diagnose or having one with a diagnosis that isn't taken seriously by either medical professionals or family, friends and/or co-workers?
Rosalind Joffe, author of Women, Work and Autoimmune Disease: Keep Working, Girlfriend!, blogged this week about being glad she has a disease people actually believe exists.
What is it with the lack of respect for illnesses like fibromyalgia and chronic fatigue syndrome?
Since I came down with my mystery illness, I've started reading a fair number of medical blogs, both by patients and by medical professionals, many not even remotely related to my experiences.
For some reason, I've been especially drawn to blogs by people who work in emergency rooms. I suspect it's the dark humor, something I've missed since leaving the newsroom.
But I'm offended when I read references to patients who came into an ER as having a "made-up disease" or being a drug seeker. To those folks, unless there's something that shows up on an X-ray or MRI, it can't be real. Migraines, back pain, fibromyalgia -- none of those things exist to some of these docs and nurses, and even if you go to the ER for something else, they would look at you with suspicion if you had a history of those problems until and unless they found clear-cut evidence of a problem (preferably trauma) they considered worthy of their time.
Here's my deep, dark confession: I was relieved last time I saw my rheumatologist and he told his resident that he had crossed fibromyalgia off his list of possible diagnoses for me because of the collection of abnormal blood tests results I'd had.
Don't get me wrong, I respect fibromyalgia as a legitimate illness that causes much pain and suffering, sometimes to the point of total disability. I do not consider it a made-up disease.
But there are so many doctors out there who either don't believe fibromyalgia exists, or who think it's a psychological disorder. And even more laymen who think it's a bogus diagnosis.
Even (especially?) the media has little to no respect for fibromyalgia. Earlier this year, the New York Times (not my favorite newspaper) inflamed the fibromyalgia community with an article about the approval of the drug Lyrica to treat fibromyalgia. The article was insulting to people who suffer with fibromyalgia from its start: "Fibromyalgia is a real disease. Or so says Pfizer ..."
It's bad enough to have an invisible chronic illness and constantly have people saying (or thinking), "But you don't look sick ..." without also having them roll their eyes because they think you're either faking or that it's all in your head.
What does it take to get some respect for the fibromyalgia community? And the rest of the invisible chronic illnesses?
Tuesday was two days after the summer solstice, but it was certainly the longest day I've had in a long time.
My husband, Scott, had one of his rare business trips, with his flight leaving at 6:15 a.m. Tuesday and, thankfully, returning home that night.
His early departure meant that when Ellie woke up at 2 a.m. and called for him, I needed to respond to her instead. We'd discussed his trip with her, but in the middle of the night, she apparently forgot about it and was beyond disappointed to get me instead of him.
"Iiiiiiiiii waaaaaaaaaant Scooooooooooott," she sobbed for just over an hour. (Yes, she tends to call us by our first names, and we're mostly OK with that. Mostly.)
The poor kid eventually cried herself to sleep.
Then it was, I think, the first time I had to get her ready for school/camp/daycare on my own. Since I didn't have a job I needed to get to, we didn't set an alarm and she woke up on her own about 6:30 a.m., 30 minutes later than normal. (And I was grateful for that, and that it wasn't one of her days when she woke up 45 minutes earlier than usual.)
The morning routine went fine -- she was delighted when I let her choose what clothes I would wear for the day -- and I dropped her off at preschool at 7:30 a.m.
I came home and immediately crawled back into bed for a couple hours more sleep, although I would have been happier with five or six more hours sleep. But I had a noon appointment with my internist (who, btw, had not heard of the NIH's Undiagnosed Diseases Program and was excited to hear about it), followed by a meeting with my lawyer to discuss next week's deposition on my 2006 car accident that left me with ongoing back and neck pain.
Back-to-back appointments on any day would have been Too Much for me, particularly such lengthy appointments (almost an hour with the internist, 90 minutes with the lawyer). But this day? I was crazy to even try.
After the lawyer, I went home for a little downtime before picking up Ellie. I had promised her a trip to McDonald's Playland after school, but I knew I just wasn't up to it so I bribed her with a "movie night" instead. She was delighted, since she rarely (if ever -- I can't think of another time) gets to watch DVDs on a week night.
We both enjoyed Enchanted, a movie we've watched several times before. Ellie was great about cooperating with getting ready for bed, but then came the hard part -- going to sleep without Daddy. I had this silly idea that if I let her stay up a bit later than usual, she would be tired and fall asleep faster. Nope!
We hit her bedroom for lights out about 8:30 or 8:45 p.m. I was beyond exhausted at that point, to the point that I was literally shaking/trembling. Ellie was a chatterbox (she gets that from her mom, who was notorious with college roommates for getting chatty as soon as the lights went out), and just didn't settle down the way I hoped she would. She talked, and sang, and fidgeted until finally, around 10 p.m., she finally gave up and fell asleep holding both my hands.
That last part was trickier than it sounds because it hurt even though she wasn't squeezing my hands particularly hard. But it was worth it, since it got her to sleep finally.
I was creeping out of her room about 10:20 p.m., just as I heard Scott coming into the house, a long, long day for both of us.
Today, I'm really paying the piper for putting in a "normal" day yesterday. I find it amazing that when I overdo things, not only do my mystery illness symptoms flare, but so do other ones. I started getting a killer sore throat during Ellie's staying-awake marathon, and by the time I got to sleep myself, I had major congestion and sinus pain.
My lawyer asked yesterday afternoon how I was feeling, and I replied, "Cruddy." Today, I'm wishing to go back to cruddy, which would be a major improvement. :-(
******
Apologies to those who have left comments lately or sent email, both of which I'm horribly behind on. I will catch up, but it's not looking likely for today.
You know it's a bad sign when the lab technician says, "Jeez, you just don't want to clot, do you?!" as she raises your arm in the air and presses with gauze on the site of the blood draw.
My hematologist read his email while on vacation, and I got the call this morning that he'd like to repeat the platelet function test to make sure it wasn't a fluke or a lab error (although with the elevated result from November 2007, it seems unlikely that it was a fluke) as well as to run some autoimmune coagulation tests. Unfortunately, I didn't get the names of those tests today, so I'll have to wait until I get the results to find out exactly what he was looking for.
My hematologist teaches and treats patients at OHSU, Oregon's medical school, so you deal with a lot of students there. A phlebotomy student who finished her coursework and is doing her internship asked if it was all right for her to draw my blood.
I told her no problem, but also alerted her that my veins can be challenging to get a needle into. Then she looked at both my arms, with 4-inch-long, 2-inch-wide bruises at both wrists and a large bruise in my right elbow, and bit her lip.
She felt around tentatively for a vein that wasn't in the center of one of the bruises, before she asked the other tech to trade patients with her. Poor kid. I was fine with letting her try a poke or two on me since I figure students need practice on the people with tricky veins as well as the ones with easy veins. But she didn't want to hurt me by poking me in one of the bruises, and those were the only veins she felt semi-confident of being able to tap.
Her more experienced colleague got lucky on the first poke, and then was determined that she wouldn't add a new bruise, hence the holding my arm up when I didn't clot with normal pressure.
I got only a little bruise where the needle poked me, but I got a series of bruises higher on my arm where she tied the tourniquet.
But what are you going to do when you bruise easily and have for your entire life?
Today was my two-week post-op checkup with my OB who did my D&C and endometrial ablation on June 4.
She said she was pleased with how the procedure went and gave me some photos of the inside of my uterus. The only thing that was at all unusual is apparently the inside of my uterus is heart-shaped. That sounds sweet, but it may have been a contributing factor to my miscarriages. (It's moot now since we no longer plan to expand our family.)
But the abnormal platelet function test that her nurse called me about just a couple days after the procedure is apparently more serious than I realized. The OB was pleased to hear I already have a hematologist, and told me to call him today.
I left a message for his assistant, and got a quick call back. "Your PT is 70?!" she asked. "Do you have it in front of you? Can you fax it to me?" Meanwhile, she was looking at my file on her computer. "It looks like Dr. D was treating you just for anemia. We didn't know you had a bleeding disorder!"
"Well," I replied, "I didn't know that either. And I don't know that I do."
Like my neurologist, Dr. D is out of town on vacation, but he's responding to email sporadically so she expects to have a plan for me tomorrow.
Hm. I guess if I'm not clotting properly -- I'm taking twice as long to clot as it should -- that explains the horrendous bruises I have from my blood patch experience ...
Stay tuned. I'll let y'all know what's up when I hear something.
(FWIW, the OB said that perhaps my difficulty clotting was related to my overall health issues. She says it sometimes becomes an issue for people with lupus and other autoimmune diseases. We'll see. I suspect this is just another in a long line of weird test results that don't lead to a clear diagnosis.)
Edited to Add: I vaguely remembered there being some tests run earlier in my illness because I was freaking out about my bruises. I dug through my very thick file of lab test results and discovered that platelet function tests had been run back in November 2007. At that time, the APTT that's causing concern now was 53.6. I don't know why that didn't get followed up on back then. I faxed over those results to the hematologist as well, so he'll have that much more to contemplate. I'm guessing that I won't be waiting until I'm due for an annual checkup on my MGUS before I see him again ...
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