ITP

Idiopathic Thrombocytopinia Purpura or for short, ITP: an autoimmune disease of unknown origin in which your body attacks its own platelets. Platelets are what cause your blood to clot. If/when your platelet count gets too low, you start having excessive bruising and/or bleeding and if it's really low you can have spontaneous internal bleeding.

Never heard of it? Neither had I, but I have this disease. It came on after Laura was born. My CBC at her birth was normal but about 1 1/2 months later, my legs and arms were covered with bruises. At first I chalked it up to post-pregnancy hormones and sleep-deprivation clumsiness, but as the bruising got worse, it became harder to write them off as nothing. Finally, I went to my PCP for a full physical and my CBC came back showing very low platelets. I was referred to a hematologist.

I won't bore you with the battery of tests that were run, but there were many. For the last 7 months, I've had blood drawn weekly to check my counts. Last week, I met with my (current) hematologist and because things haven't improved the way he hoped, he wanted to schedule me for a bone marrow biopsy. This is now forcing the issue for me to find a new hematologist who accepts my new insurance because if I don't, the procedure will cost about $2000.00 and that doesn't include the pathology. If I find a doctor in my network, it's a $20.00 co-pay. Sigh...I guess it's time to make some phone calls.

Anyway, every month I sit in the waiting room and glance at the people around me. I know they are dealing with horrible diseases, mostly cancers, and that I should be grateful that my diagnosis is ITP. When we were going through the tests, I couldn't help but worry about some of the diseases and how they would affect my family if I had them. I thought about what it would mean for them to have a sick Mom and wife. Someone who may require hospitalizations, chemotherapy, full time care. I also went to "the dark place" and thought about dying and what it would mean for R and my children to grow up without me. So on many levels, I am grateful that my diagnosis is ITP. But it's still hard. Every week, I drag Joey and Laura to the lab and try as I may to distract him, Joey watches the phlebotomist drawing my blood. He used to have lots of questions, but now he's pretty used to it. I find that, in and of itself, disturbing.

ITP itself is not life-threatening, however, it can be life altering. Things that I always took for granted may now be high risk activities for me: riding my bike, ice skating, playing tennis, skiing, even driving. When my count is low, if I fall or get hit in the head, well, these things could cause a brain bleed. If I need significant dental work or surgery, and my counts are too low, I may need blood transfusions beforehand to make sure my blood will clot so I won't bleed to death. These are extreme examples, but there have been times when my counts have been so low that these are realistic examples for me. It's not all doom and gloom, as there have been other times when my counts have been near normal and even in normal range.

I'm trying to remain positive about it all, but it's hard. There is nothing I can do to change this. Eating better, exersizing more, sleeping more or less-none of these things have any influence on platelet counts. It's very unsettling and somewhat frustrating.

But more than that, I'm mad at my body because I feel like it's failing me, once again.