Before I knew it Dr T came in. I'm so thankful I get to stay in his care, even though my appointment was mysteriously canceled he took his time to talk to me about different things...like the fact that about 50% of the time when ITP is discovered and there is another associated disease existing and my fears. I was so freakishly nervous. Since 6 months have passed Dr T. is no longer concerned about associated diseases, he thinks I just have a idiopathic chronic case of ITP that will be intermittent for the rest of my life. This is good news, the other associated diseases are scary....so scary (message me if you have specific questions, I'd be happy to discuss those). He even said "I don't want to cause you to worry more by telling you this"... I reassured him I prefer the education....I'll worry anyway. He also said I really shouldn't worry about having more children, that if I do get pregnant and my ITP worsens during my pregnancy I can do the IV treatments (this is an 8 hour treatment, in the hospital! Yikes!). I would be unable to do steroids while pregnant. I'm still petrified of having another child. He reassured me that he doesn't think I will ever have normal platelet numbers but I don't need them to be normal to be ok (normal is over 150k), as long as I can stay around or above 80k I can live a normal life full of the activities I love. My numbers weren't available so I headed back to work (two hours late) and he said he'd call me.
I went to a movie with my dearest friend E. at 7pm thinking I wouldn't hear from Dr T until the next day. Nope, I missed his call twice around 8pm. He called me again at 9pm and again took time to talk to me. He mentioned that I was more nervous than ever before. He again took time to talk to me about how "this is not a death sentence, it's just annoying....you are doing very well and I expect your recurrences to be spread out over years not months". My platelet numbers have continued to lower about 20% to 90k. He reminded me of what to watch for and reminded me I don't need an appointment to have my blood checked, to just call him and I could go over on my lunch and be checked, he would call me. I'm just so thankful for him, he gets me....he doesn't just brush off that "I over think this whole thing" (my words). I have another appointment in August. (Side note, I'm no longer anemic! Yay! I still have to stay on Iron for 3 month but that is fine.)
So it is good news, I'll probably need treatment again in the fall. It will probably be steroids...while the side effects are rough...I prefer them because the thought of the IV treatment terrifies me (did I mention they are $10k a pop?).
Other related posts:
My Diagnosis with ITP
What is ITP?