UPDATE: Progress!

The following chart shows the progression of my platelet count from the onset of my ITP. I thought it would help illustrate how my counts improved with the Nplate injections (and careful avoidance of tonic water).

I apologize in advance for the small size. I realize it’s a little ridiculous, (I hope anyone intent on looking closely is prepared with reading glasses…haha) but with this 1-column blog template, it’s the best I can do for now.

• Little purple diamonds = Nplate injections
• Vertical purple line = 1st Nplate injection
• “Normal” platelet range indicated in pink-ish/coral-ish color

(Go ahead and laugh at my legend, you scientific-types…)

Clearly, this drug was a Godsend. It’s taken a while, but my blood seems to finally be back to normal. Yay, normal. :)

If you’re new to ITP or this site and want the backstory, click here to start at the beginning of my hemadrama.

Two Lessons (brought to you by the letters I, T, and P)

I recently read a PDSA Discussion Forum post by a fellow ITP patient dealing with the effects this disorder can have on one’s psyche. This post hit home with me, because I’ve dealt with the same two concerns she expressed in some regard since my diagnosis. A victim of the severe anxiety and worry which often accompany this disorder (which, in many cases, can be attributed to the Prednisone commonly prescribed), this concerned patient found herself extremely worried about a recently published study linking 57 deaths to Rituxan, a common drug used in ITP treatment. What drug was used to treat her ITP? You guessed it.

I didn’t take Rituxan, but through my own ITP experience, I can attest to the worry and anxiety that come with the territory. When you find yourself in a hospital bed observing concerned doctors and baffled nurses while being tested for every disease/disorder imaginable, you suddenly come to the realization that you’re not invincible; that life is short and that you could be the sick person on the Sunday School prayer list. A piece of paper neatly 2 hole-punched and added to your file folder at the nurse’s station down the hall could easily contain life-changing information. You recognize that, although you haven’t taken life completely for granted, you’ve probably spent entirely too much time being angry or upset or worried over the embarrassingly petty minutiae of life…but, I digress. (I’ll get to that later. See: Lesson #2.) My point: When one comes to this I’m-Not-Superman/Superwoman realization, it’s easy to worry about everything else that could possibly be wrong.

UPDATE: I’ll have a double Thrombocytopenia. With extra antibodies. And hold the platelets, please.

I’ve been failing at updating. Big time. So, today, I’m left with no choice other than to bust out the bullet points in order to get things up-to-speed…

• The bad news: My amazing, awesome original hematologist who was there from the onset left his practice to do oncology research for a biotech company at the end of June. The good news: I am now seeing an amazing, awesome new hematologist who shared his office with the original and feel good about it. I still go to the same office, with the same super nice nurses/office staff…the only thing that’s really changed is the doctor. (And my platelet count!)
• New hematologist is still hopeful that my case of ITP was acute, and possibly brought on by the Quinine exposure in the tonic I used to drink. He even has a name for it: Cocktail Thrombocytopenia. (Sounds fun, huh?) I think that’s what I’m going to start calling vodka-tonics…Thrombocytopenias.
• Platelet count on July 13: 261k (Woooo!)
• Platelet count on July 27: 261k (Woooooooooo!) (Really good news, considering the fact that I was unintentionally bashed in the head/ear by a 13-year-old’s paddle during a white water rafting trip last week…HARD. Like, spinny dizzy birdies HARD. And, considering the fact that I coaxed my out-of-shape body 4 miles up and down a mountain for 6 hours…my calves still hate me… )

I hope I don’t jinx myself, but given my recent stretch of good news, I’m going to cease the weekly CBC updates, because each new post pushes all of the most relevant, useful material written in the midst of this ordeal further and further back in the archives, making it more difficult for people to find. I have plans for other posts, however, and will continue to update as necessary. Once you step on the ITP rollercoaster, it’s impossible to see what lies ahead, so I might be back here posting about mouth blisters and 0 platelets sooner than I think.

But I hope not.

To health! Mazeltov! (I’m toasting with wine, P.S…NOT a mixed drink, just in case they get sloppy with the tonic…)

Up!

Correlation between extremely hot weather and platelet production?

I don’t know, but…maybe…

Turns out, the temperatures/heat index in Houston are not the only things that have been on a consistent climb since my last posting. Apparently, my platelets have decided to accelerate, too: my current count is up to 289k. :)

I’m told that a healthy platelet count can fluctuate quite a bit from week to week or even day to day, which would explain the drastic gain since my last results. My next blood draw is in 2 weeks, so as long as I don’t melt and/or suffocate between now and then, I’ll be back…

Down.

I’ve lost around 100,000 platelets in the past two weeks, making my current count 188k.

I also feel like absolute crap today and have since returning home from a girls’ weekend in Austin on Sunday afternoon. (Fun trip to a city I love, but my allergies revolt every time I visit.)

(On a side note, as appealing as it may sound, sipping mugs of Theraflu in 97 degree weather is not fun.)

I have tons of stories from the trip that I’d love to make into witty little anecdotes relating back to my CBC results, (like the fact that, unbekownst to us, this weekend was actually the Republic of Texas Motorcycle Rally Extravaganza and my once-beloved 6th Street was lined with thousands of bikes whose hairy-backed owners thought it was comical to watch my girlfriends and I practically jump out of our stilettos as they revved their loud engines and called us “Princess.” ) but I’m just not in that state of mind today…

The platelet drop could be attributed to being sick and popping sinus/allergy/cold/flu pills like candy, but—you guessed it—we’ll never know…

My doctor didn’t seem overly concerned about the drop and said we’ll check again in 2 weeks. If he’s not worried, guess I shouldn’t be either.

Free at last…

I am absolutely not going to give you a weekly CBC update today.

It’s not that I’m being bratty…it’s just that…for the first time since February, I can’t give you my weekly results…

…because I don’t know them.

(Oooooooooh…)

And I don’t know them because I didn’t have to have my blood drawn this week!

As I mentioned in my last post, due to my platelets’ recent performance, I now have blood work every other Monday.  It seems we’re out on good behavior. No longer shackled by the chains of my weekly 8 am appointment with the girls in the blood lab, we’re free! (On probation, of course, but free for the most part.)

Snaps for 2 less needles shoved in my arm per month.

(Today makes 8 weeks with no drugs…scary…)

But, even though I have no numbers for you this week, I’m not leaving you empty-handed. I recently stumbled upon the Information Television Network’s webpage for their TV series “Healthy Body Healthy Mind,” which featured an episode dedicated to ITP. To be honest, I haven’t gotten to watch it in its entirety yet, (watching it at work in Cubicle-Land would violate the cubicle code of ethics and, call me crazy, I always seem to find other ways to waste my time when I get home at night…) but the first 6 minutes tells me that it’s definitely worth posting.  (I did see that Caroline Kruse, ITP patient and Executive Director of the Platelet Disorder Support Association, is interviewed…) Once I watch the whole thing and determine whether or not it complies with my strict rules for posting on my “What is ITP?” page, (strict rules = basic, informative and easily understood by someone who isn’t a hematologist) I may post it there permanently.

In the meantime, watch it by clicking the following link:

ITP-The Hidden Blood Disorder

Liar, liar, feet on fire!

If I were Pinocchio, my nose would have grown a foot as soon as I typed the following text in my last post:

“More posts to come this week. I promise! Believe it or not, I’ve actually been working on some informative posts…stay tuned!”

And here I am a week later, giving you my boring weekly CBC results. But, listen, I had something to do every single night this past week that prevented me from making good on my promise. It wasn’t me! Okay…it was totally me. I’m sorry.

But…what’s my excuse for failing to stay true to my usual Monday night posting schedule at the very least?

I’ll blame it on a man tamed Tao at a nearby nail salon, a puddle of cuticle oil and my own clumsiness.

You know I’m going to elaborate.

Quick weekly update: D-E-F-E-N-S-E!

This is going to be one sorry excuse for a post, but I’m currently watching LeBron lead the Cavs to another win, so please accept my apologies in advance.

In short, I was fortunate enough to get some more great news today: My platelets are up to 224k this week without an Nplate injection! That’s a gain of 14,000 platelets in 7 days. Yep. My platelets’ defensive game is solid lately. They’re bigger, they’re faster, they’re stronger. No antibodies getting in the lane this week. (Like LeBron just did! OHHHHHHHHHHH!) Needless to say, I’m pretty proud. 

(Except, now, when I get bitten by a mosquito and am left with that annoying, painful, drive-me-crazy itching, I can no longer gain satisfaction by picturing them dying an agonizing death due to ingesting my poisonous, platelet-deficient blood…)  

Crap. Orlando is now up by 2 with 4 seconds left in the game…gotta wrap it up…

More posts to come this week. I promise! Believe it or not, I’ve actually been working on some informative posts…stay tuned!

Overtime!

(On a side note, I saw Herschel, my favorite horse who spends his days chauffeuring a little cop around downtown Houston protecting citizens from its most threatening and dangerous inspection sticker violators while sitting at a stoplight today. I honked.)

UPDATE 5/27: They lost. Right after I posted this entry. LeBron & the Cavs LOST. :( Disappointing.

Platelet-training: I’m a big kid now!

I just knew my doctor was going call me into the office for an Nplate injection today. Since my last injection on April 14, my platelets were steadily declining at a rate of around 100k or so/week, and at last count, I was holding at 152k. Plus, I had a crazy busy week, having something going on each night that kept me out later than usual. I was pretty confident that I had socialized my way to 0 platelets, so imagine my surprise when the nurse called today and said my count was 210k!

210k? As in, last week’s count plus 58,000?

…but I didn’t have an injection last week…

“Wait,” I interrupted the nurse with whom I’ve become so well-acquainted, “so…I actually grew some platelets on my own…all by myself?!”

Wow! I feel like a kid on a Pull-Ups commercial. (I’m a big kid now!) I don’t remember how it felt to conquer the art of potty-training, (Although I know I had to be better at it than my little brother was. Trust me–I was there, I was 6, and all I have to say is that you should never hang a magazine rack full of reading materials on the wall next to the toilet when you’re potty-training a 2-year-old boy…unless you hate said reading materials and want to subject them to a life parallel to that of a tree trunk in Central Park…) but I can imagine it would feel similar to growing 58,000 platelets without the aide of any drugs.

If I had a progress chart with gold star stickers like my brother had hanging in the bathroom when he was potty-training, I would definitely get a big gold star today.

(…except mine would be…um…dry.)

My 1st Retraction: All artificial sweeteners are not created (ahem) Equal.

So…a month or so ago, I published a post  about a study my boyfriend brought to my attention regarding the effects of the artificial sweetener, Aspartame, on platelet growth. http://newsgroups.derkeiler.com/Archive/Misc/misc.health.alternative/2007-08/msg00565.html

And, although I never mentioned a brand name specifically, in choosing a title for my post, I may have alluded to a specific sweetener in a pink package which can be found on restaurant tables everywhere. However, this pink packaged sweetener doesn’t contain the ingredient in question. This product’s controversial ingredient is Saccharin. Don’t get me wrong, Saccharin doesn’t boast a clean record by any means, but I’m unaware of research linking it to decreased platelet counts. So, actually, the product to avoid (based on the study mentioned above) is the sweetener in the blue package.

Just thought I’d clarify.

(To summarize, the product in the pink package contains Saccharin, the product in the blue package contains Aspartame, and the newer product in the yellow package contains Sucralose.)

And, now we’ve reached the point in this post where I recommend the best sweetener for ITP patients based on my extensive research/knowledge on the topic.

Right?

Wrong.

The only thing I have figured out about this disorder is that I can’t figure it out. What seems to work for one person has no effect on another, so I’m reluctant to endorse anything. I’m not a doctor. I’m not a scientist or a nutritionist or a toxicologist, and I’ll probably never claim to be an expert on this disorder. I’m an ITP patient who really just wants to drink sweet tea while her platelet counts stay high.

Personally, I’m sticking with the white package. Heard of it? Yeah, it’s called sugar…

See the Platelet Disorder Support Association’s list of substances that may reduce platelet counts featured on their website at http://www.pdsa.org/itp-information/itp-warnings.html.