My October 19th blood counts were essentially the same as they were on the 5th so the hematologist tapered my Prednisone down to 15mg.
I saw him again yesterday, November 3rd, and he tapered me down to 10mg! I’m now on a TENTH of what I started on! My platelet count yesterday had shot up from the high 80s to 114! 114?! How is that possible?!! He said at this point he expects my platelets to be going up each week despite the taper. I don’t really understand how that makes any logical sense, but I’m inclined to believe him!
Since 114 is the highest my platelets have been in months, you would think I was excited, but I was not. As the title of this post alludes, my reaction to the news was very public and very emotional. Unfortunately, that emotion was frustration and the method of public display was tears.
Let me explain:
In the two weeks leading up to this appointment I have had half a dozen bloody noses. One was so bad that my coworkers got nervous and helped me find a way to elevate my feet in hopes of slowing down the bleeding. That bloody nose ended up lasting 19 minutes – almost an entire episode of The Office, which is what I was watching at the time. How is it that my platelets skyrocketed but my bloody noses returned?
Well, that is exactly what I asked the doctor. He had the nurse come into the room and take four additional vials of blood. He sent them to the lab to check my protein clotting levels. Aside from that, he has no other possible explanation for the bloody noses and said that, if they persist, I should see an ENT.
The cause of my tears wasn’t a bloody nose or even the combined six bloody noses – it was realizing that I still have no clue, even after five months, how to identify the symptoms of this disease. Do you know how infuriating it is to be told what symptoms to look for, look for them, recognize them, and then have them turn out to be nothing? Bloody noses are generally a sign of low platelets, yet every time I get one, my platelets seem to go up. It makes zero logical sense and it’s so frustrating. I can’t even trust my own body to correctly identify symptoms. Down the line, once I’m completely off the Prednisone, and only seeing the hematologist once every three months or twice a year, how the hell am I going to recognize a relapse?! What if I don’t recognize it until it’s too late? Every time I identify a symptom it’s wrong. I feel like the girl who cried wolf. I’m not worried about recognizing the AIHA because the anemia symptoms were all very physical and noticeable, but recognizing an ITP relapse?? Impossible. The disease is invisible and unpredictable and I’m constantly reminded that I have zero control over it. That is what had me in tears.