Today I had a follow-up appointment from my IVIG infusion treatments. I had been emotionally working myself up to this appointment because I figured we’d talk about Rituxan infusions, which is the chemo option I mentioned in a previous post.
Some more blood work, some more waiting. And then my favorite hematologist walked in, smiling, and he said, “I have good news.”
“Oh, really?” I said. “You never have good news.”
I was skeptical and not shy about it. I waited while he looked through my chart.
“I believe we might be looking at remission here,” he finally said. Not what I was expecting him to say. Today my lab results showed my platelet counts have been in the same general range for the past three draws. This is not how my immune system responded to the first two attempts at IVIG. The first two infusions sent my numbers skyrocketing only to plummet quickly a couple weeks later.
Remission, unfortunately, can’t be determined by a test. It can only be determined by more waiting. So we wait again. But it’s a good wait.
The only downfall is it sounds like I’ll be on prednisone for a long, long time either way.
Personally, I think the optimism comes too soon. I’d like to see a couple more weeks at these numbers. The difficult part of this process is not having a good baseline. What I mean is I’m a rare ITP patient. I was mostly asymptomatic when I was diagnosed. Most ITP patients are diagnosed as a result of dangerously low platelets, bruising, and bleeding. I was diagnosed by accident.
Basically, we can’t compare my progress to other patients. I’m an unusual ITP fighter.
Ironically, I just ordered a more permanent medical ID bracelet. And this preliminary news comes just in time for September, which is ITP Awareness Month. (Wear purple for platelets!) So hopefully I can share more than awareness next month if my immune system holds up.