Living & Coping With ITP
It was warm that day. I may not remember the exact date and time I received the call, but I do remember that it was a warm day. Bad or unexpected news often hits you suddenly, leaving you in a state of shock that prevents your mind from thinking rationally and keeps your body from responding to even the most basic of command functions. As luck would have it, I was riding the bus home when I received the call so all I had to worry about was pulling the cord at the right moment to signal that I wished to depart. The year was 2005…and it was warm that day.
The call was from my doctor who was calling about my recent blood work. Always a good sign, right? Anyway, he said I needed to get to the ER right away. I tried getting more information from him but it was difficult to hear over the engine of the Port Authority bus and the loud, obnoxious woman who was yapping on her cell phone nearby. Apparently, someone on the other end “didn’t know her” even though the conversation seemed to go on for several minutes and involved intimate details about their love life. I don’t think my doctor would have told me what the problem was anyway, he just kept insisting I get to the ER immediately.
I hesitated for a little, almost rejecting the idea as I hated hospitals…still do. I eventually agreed and once I was home, set off in my car back on the same stretch of highway towards Allegheny General. I called Jen and told her what was going on, though I believe she was working at the time. I don’t remember much about the drive there, only that my head was swimming with random thoughts that were trying to coalesce into a logical plan of action. The biggest fear people like me have is not having enough information and not being in control.
So, after a long and grueling wait in the ER waiting room, I saw my mom rush in out of the corner of my eye. I was truly grateful to see her, as even though I had a chance to collect my thoughts, I was still a nervous wreck. She told me Jen had called her and so she had left work to come sit with me, which was nice of her to do.
Finally, someone called me back and I immediately regretted agreeing to come to the ER. There stood a middle-aged woman who was pulling on a set of rubber gloves way too eagerly. At first I thought, “well my issue is blood related so maybe she’s just going to draw blood and is being extra careful.” Turns out no. Everyone but her left the room and I got to enjoy my first medical violation. I made a mental note to mark it on the calendar when I got home. All that was missing from the experience was Martin Lawrence and choir busting out with “Oh Happy Day.”
So, after the whistling crazy lady with the set of evil rubber gloves left, I pulled up my pants and curled into a fetal position in whichever corner of the room was darkest. My mom came back into the room and started laughing…having been a nurse herself for over three hundred years, she knew what had just happened.
After that, another white coat person came into the room. I was told I had ITP. Finally! Some new information for my mind to process! Intensive Training Program? No. Identity Theft Protection? No…wrong place…unless I was cloned…no. In-Target Probe…whatever that is, I hope not. Institute for Theoretical Physics? Maybe, I’m one smart cookie. Icky Toe Pressure? No. Insane Taco Plan? No…I hate Taco Bell. BLAH! I had to ask for more information. I got some answers, but they were too busy trying to convince me to let myself be admitted overnight…DOUBLE BLAH!!!
So, I ended up spending the night, another first. They made me sit in a wheelchair and pushed me to where I needed to go, which I never understood. My legs work perfectly fine. Anyway, I was greeted by a bunch of hot nurses who ending up fighting over me in one grand royale wrestling match. That’s how I remember it so that’s definitely what happened. They hooked me up to some sort of IV bag, which I got dizzy from and had them stop administering. They drew blood about a thousand times and I had to wear this…apron…I guess you could call it. I’m not sure how they can call it a gown. It’s half a gown. I guess budget cuts have reached an all time high. People should really write to their congressman to push for more medical funding. I just took two of them, one for the front and one for the exposed back.
My hematologist came to visit and explained a little more about what ITP was. I checked myself out the next morning despite their objections. There was no cure for ITP, so what was the point? I had responsibilities to take care of and I didn’t much enjoy being a lab rat.
That’s my story. Now for the boring medical lesson.
ITP is short for Idiopathic Thrombocytopenic Purpura. I had personally decided on Insane Taco Plan, but Idiopathic Thrombocytopenic Purpura was obviously going to be my next guess. It’s a blood disorder (*Bing!* Now we’re cooking with gas) that is fairly rare and to which there is no current cure. Idiopathic means “unknown cause”, Trombonecyclounicyclepsychophenetic (or whatever) means “having an abnormally low platelet count”, and Purpura means ”the appearance of red or purple discolorations on the skin.”
To understand ITP, we need to take a small peek at what goes on in the spleen, an organ that helps regulate the body’s immune system. The spleen not only removes old red blood cells, but produces new ones. It can also create antibodies when needed. In essence, it acts as a filtration center for your blood cells.
Your body has something called platelets. Platelets help your blood clot. This is essential for when you get a cut and start to bleed. If your blood doesn’t clot, there is a good chance that you will continue to bleed.
The normal platelet count for the average, healthy human being is between 150,000 and 450,000 per μl (microlitre) of blood. Mine came in around 50,000, if memory serves. Patients below 20,000 will experience spontaneous bleeding and various health risks. Patients below 50,000 are advised not to participate in contact sports and to wear helmets and other safety gear when necessary.
What causes the low platelet count? That’s where the spleen and the immune system come in. Apparently, my immune system sees my platelets as a foreign body and is wiping them out regularly. Not all of them, but enough for it to matter.
Those with a low platelet count are prone to bruise easily and will sometimes see red spots spontaneously appearing on portions of their skin. I myself have experienced both of these symptoms but never thought anything of it.
Take all of the above information, couple it with the fact that medical experts like hematologists don’t really know where the problem originates, and boom! We have ITP.
So what can be done to combat ITP? One approach is medication in the form of a pill, the most common being a steroid called Prednisone. I was on this particular steroid for a while and let me tell you, it’s no fun. The drug itself helps to weaken the immune system, which in turn, helps prevent the antibodies from destroying the platelets. Yes, it did increase my platelets for a short period of time, but the side effects are not worth it. I experienced bad dreams, was prone to sweating, gained weight, was tired often, lost my sex drive, and was overall irritable. Basically, what every woman looks for in a guy on the first date.
Prednisone doses go as high as 80 mg, but doctors recommend a patient only be on that strong a dose for a short period of time. I was on the full 80 mg for a while and never looked back when I weened myself off of it. Terrible, terrible drug.
Intravenous medication was the second option I was given…something called IVIG, or immune globulin. It’s rather expensive, as it is obtained from plasma donors. A single infusion could cost anywhere from $3,000 up to $10,000. I would have to come in once a week every Friday for eight hours. I was 23 years old, in school, and working part-time at night. No way.
Option three was a splenectomy, which removes your spleen to weaken your immune system…in theory. Call me crazy, but my spleen is there for a reason…you know…to help fight off bacterial and viral infections? Not only that, but not all splenectomies resulted in a permanent increase in platelets.
I quickly opted to file the condition in the back of my mind, seeing as how there was no real cure. Medicines can temporarily boost your platelet count but usually at the cost of your immune system and sanity as you attempt to combat all of the side effects. Research shows that having a good diet can help increase your platelets…avoiding fast food, processed food, sugars, that sort of thing. Even if this isn’t the case, I’m sure eating good, whole foods would make you “feel better” anyway. Can’t hurt to give it a try if you’re someone who lives off of hot pockets.
For seven years, I’ve opted to try to play it safe to a degree and not take any unnecessary risks when I didn’t have to. Luckily, my platelet count isn’t low enough to warrant hospitalization, but I do have to be careful to not get into any serious accidents. By playing it smart, you can find ways to reduce the risk of random chance screwing up your day.
By the same token, you can’t live your life in fear, feeling sorry for yourself. The unfortunate truth is that anything could happen today, tomorrow, or a week from now. Are you really going to waste what time you have left by sitting in a room, eating gallons of mint chocolate chip ice cream wearing sweat pants that haven’t been washed in seven months?
Go out, live your life, and be happy. Just remember to be responsible, especially if you have children. By responsible, I mean go watch Star Trek, take up video games, and share every article on my blog.