"But I don't feel sick. So why do I have to stay here in the hospital?" I stubbornly asked the emergency room doctor, and he replied in an exasperated voice, "Because you are one sick chick. Your platelets are down to 2000. You are going upstairs to PCU and will stay there until I say you can go home. Your platelet levels are falling fast. Yesterday they were 11, this morning, they were 4, and now they are 2. Something needs to be done right now."
"What does that mean? I don't know what all those numbers mean," I whimpered, "and why do I have all these bruises and the red dots all over my legs?"
The doctor explained, "Your platelets should be over 140 to be in the normal range. Without platelets, your blood will not clot. The red dots, otherwise known as petechiae, and the bruises are due to having low platelets. Your blood is actually leaking through the walls of your capillaries and up through the pores in your skin, causing the red dots. With your platelets so low, you are in danger of hemorrhaging either internally or externally. It's a good thing you didn't wait any longer before you came to the hospital."
"Oh, Okay." That was the beginning of my struggle with Immune Thrombocytopenic Purpura. (Excerpt from Heartaches and Miracles)
I didn't feel sick or have any pain, but there I was in a bed with nurses hovering over me. One was forcing partially thawed platelets into an IV tube. Another was inserting a second IV into my other arm. A big bottle of stuff was hanging close by, ready to be pumped into me. Meanwhile, a vampire disguised as a sweet little old lady must have drawn 50 vials of blood from my wrist.
I closed my eyes blocking out the frantic activity going on around me and fooled myself into believing that after a few tests, I'd be able to go home.
Nope, it wasn't that simple.
If I had known then what I know now, my introduction to ITP could've been less dramatic. If I'd only heeded the flashing neon lights going off in my brain and paid attention to the bells and whistles trying to get my attention.
The never-ending, persistent bleeding, terrible fatigue, bruises, and petechiae were my body's way of saying, "Hey, something's wrong. Fix me." Yet instead of listening and obeying, I'd buried my head in the sand, hoping the messages would go away.
I'd almost waited too late. I could have died that night. My platelets dropped to zero, and the steadily increasing stream of blood would've kept flowing until there wasn't anymore.
It still scares me to think about my near-death experience. At the time, I had no idea what was going on or that I was that close to dying. I'd never heard of ITP or ever dreamed something like that could happen to me.
The following years ushered in more new experiences I wasn't prepared for. Riding the ITP roller coaster of recovery and relapses took me for some loopy loops and through dark tunnels with a lot of ups and stomach-churning plunges into the unknown.
There is no cure for ITP, and at the time, there were no step-by-step treatment plans. So, every month was a new adventure. Will my period behave this month, or will I have another relapse? What do I have to do to get back to normal? Splenectomy, IVIg, prednisone, decadron, rituxan, vincristine – how many more treatments will I have to try before something keeps my platelet count consistent?
Sometimes the side effects from the treatments also took their toll on me: neuropathy from the vincristine, paranoia and panic attacks from decadron withdrawal, and cataracts from the prednisone.
To make a long story short, my advancing age brought with it the miracle we'd been looking for - menopause and finally, remission.
If I Could Have Known Then What I Know Now
Reflecting on all I learned from my experience with ITP, my number one wish was that I had known more about this disease before my being diagnosed. If I had been familiar with the classic warning signs, such as unexplained bruising, petechiae, fatigue, and excessive bleeding, I probably would've had blood work done long before I wound up in the hospital.
That's how Heartaches and Miracles came into being. I didn't want anyone else to go through the same experiences I had. I wanted to make others aware of ITP, so they would be proactive in getting any mysterious bruises looked at.
It became my mission to spread the word about ITP, to share my story, and let everyone know what ITP is and what it can do to a person.
In my memoir, I try to encourage those on the ITP roller coaster and let them know that remission is possible. It may take several tries, but the right treatment is out there. It takes determination, patience, and most of all, a positive attitude.
ITP is a battle. But knowing the ins and outs gives us an edge over the disorder. Hopefully, Heartaches and Miracles can give ITPers the knowledge they need to whip ITP's backside.
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