Idiopathic Thrombocytopenic Purpura

You may recall, if you happened to be here around this time last year, this long post about my stay in the hospital during the winter solstice holiday of 2008. Since I was released from the hospital, I’ve had a complete blood count (CBC) done every three months. While at times the count has been a bit on the low side, I was told it was nothing to be concerned about.

Well, here we go again....

I was looking forward to the break for the winter 2009 solstice, even though I planned to spend some time at work over the holiday to take care of a few things for the impending Star Trek Online launch. On my first day off from work, I had an appointment to see a doctor about a pain in my back. Nothing severe, but it had bugged me for over a week, so I decided to go see someone about it.

While I was at the doctor’s, I decided that I’d take care of a couple of other things things too. I was due for a blood test, so one was ordered. I stopped on my way out so the resident vampire could draw some blood.

About an hour after getting home, the phone rang. It was my doctor. He informed me that my platelet count was dangerously low. So low in fact it barely registered. He instructed me to go to the emergency room.....immediately.

Of course I was stunned. I had not felt bad or ill, maybe a little fatigued, but I attributed that to the fact that I’d been working long hours trying to get STO out the door. I pulled myself together and packed an overnight bag (something I did not get to chance do when I ended up in the hospital in 2008). I said goodbye to my dogs and left.

I checked in at the emergency room at Stanford Hospital on the evening of December 22nd. They started drawing blood and running tests. I was hopeful that I might avoid a hospital stay, but with my platelet count so low they did not want to let me go. I was admitted to the hospital around 2:30 a.m.  They decided I needed a platelet infusion.

My nurse, Letty, administered the infusion. She was quite nice. Afterwards, I tried to get a couple of hours of sleep.

The next morning the specialists started to roll in. I had a pack of six or seven hematologists and interns examine me, asking a bunch of questions. They then left the room to confer amongst themselves. I just wanted to know when I might be able to bust out of there.

They weren’t going to let me go until my count went up into the safe range. In addition to the infusion, they put me on a large dose of steroids. Wait and see....

Meanwhile about every 4 hours, a vampire would show up to suck my blood. In addition to the CBC they were running some other tests, so sometimes they’d draw half a dozen or more vials at a time.

The next day my count rose to 24. They knew I was eager to get out of there before the holiday, but it was looking increasingly like I’d be spending it in the hospital. I called my Animal Nanny, and made the necessary arrangements.

Towards the end of the day, the vampires came back and took another sampling. A couple of hours later, the head hematologist came back and told me that they had decided to allow me go home, as my count had now risen to over 30. I was instructed to come back for another CBC the day after the solstice holiday, and then they’d decide what to do after that. The diagnosis for now was ITP.

To make a long story short, my count rose during the first weeks, all the way into the normal range. Of course I was still on a very large dose of prednisone, which in theory was suppressing my autoimmune system. Now that my platelet count was back to normal, they’d begin the process of weaning me off the steroids. I’d also continue having more tests, to rule out any other possible disorders such as Lupus, etc.

It has now been two months and my count has dropped every time they have reduced the dose of steroids.  Last week I measured at 40 (still on 12.5 mg of prednisone). This is down from a peak of 240 (when I was on 80 mg prednisone). 

I returned to see my hematologist, and he seemed to be preparing me for the worst case scenario -- a splenectomy. This is a common treatment for patients with chronic ITP. If my count does not stabilize at an acceptable level as they continue to reduce the dose of prednisone, this is likely going to be the next step. While there are some other treatments (retuximab), none comes without some nasty side effects, and their effectiveness isn’t so great. Or course splenectomy is not 100 percent effective either (60-70 percent effective, but studies show that the remission rates go up after 5 years).

So I am not out of the woods yet. On the positive side of things, I feel fine and when my CBC was run last Thursday, it bumped up to 63. I’m now down to 10 mg of prednisone. We’ll see how things go over the next couple of weeks. I may still be able to avoid the surgeons blade.