Welcome to My ITP Story
I don't talk about it much. But, I have ITP. ITP is immune thrombocytopenia. Our color is purple and September is our month!
Two autumns ago, I thought I was just tired, weak, and clumsy. I mean, I walk into my bed frame almost every week. But that wouldn't explain the broken blood vessels under my fingernails, or on my stomach, or the area some people call "bingo arms." I also thought I was just like an 80-year woman with my GI habits. I went to my primary care doctor in November on a Friday and she drew some routine blood work. She thought it might be my thyroid or that I was just anemic.
The next day, as I was trying to take a nap, my doctor's partner called me and told me to get straight to the local ER. My platelets were 19; normal for an adult female is 150,000. At the ER, my platelets had dropped to 18. Not 18,000. 18. They sent me home on a pulse of steroids and told me to meet immediately with a hematologist. I thought I had cancer. I'm a heart nurse, not a heme nurse!
That next week, I met with my hematologist for the first time. I was the youngest person there. He explained everything that is ITP. ITP can be caused by a random virus (I had multiple severe sore throats in the months prior to my diagnosis). ITP can be called by stress. It's autoimmune. It is rarely genetic. The body is attacking not only the production of new platelets from your bone marrow (why my bones hurt and I was achy), but the new platelets are premature, super sticky/clotty (explains my GI symptoms), and tagged for destruction. The spleen is the platelet eater, which explains why my left flank had been hurting for months prior as well. Thankfully, I'm not a huge bruiser, but I am a bad bleeder. I was sent home on different steroids which made me gain weight, not be able to sleep, and be super emotional leading up to December.
In December 2017, the day after my work holiday party, I thought I just had food poisoning. My symptoms had returned. I worked a few hours and then my nurse practitioner boss encouraged me to go back to my hematologist and get my levels checked. At the office, my platelets were 3! They made me drive directly to the local ER. I was being admitted.
Over the next 3 days, while I ordered Christmas presents from QVC, I got to experience nursing from the other side. As a patient. I received 2 bags of platelets (basically worthless since my body just chews them up anyway) and two infusions of IVIG. The symptoms were awful. Cold and hot sweats, severe headache (a sign of drug-related meningitis), and more bone aches. I was discharged with my levels just over the recommended 50,000.
Over the next 4 Fridays, I borrowed a work laptop so I could work remotely as I received 8 hour-long infusions of Rituxan or rituximab. Rituxan is autoimmune chemotherapy used to tell the body to stop attacking my platelets. During the first infusion, I had a severe allergic reaction, my throat started to get itchy and swell. The infusion was immediately stopped and I received more steroids (yay!) to counteract the reaction. The nurses were amazing as I tried to work through the Benedryl induced fog and eat their snacks and drinks typically saved for the elderly patients receiving chemo for their cancer. It made me very reflective to still be the youngest person in the chair each week.
I finished my infusions and steroids by February 2018. I haven't been over 50,000 since. I went from having my blood work checked weekly to monthly. I've lost hair from the Rituxan treatments. I can't have another kid because my pregnancy would be too high risk, an epidural risky, and a scheduled C-section a nightmare. I'm not being snooty when I say I can't drink; I literally can't (alcohol is a blood thinner). I don't just wear long pants in the summer for fun; I literally have to coordinate when I shave my legs (TMI, I know, I'm a nurse, get over it).
However, I've made amazing friends through ITP groups on Facebook. I've taught myself more heme than I ever learned in nursing school. I've learned more about my friends, family, and coworkers through this diagnosis. I've brought my past work experience in fighting insurance authorizations to help myself get approved for expensive drugs that I might need in the future. It's changed everything, even my worry for every little bruise my son gets (don't worry; I made them check; his platelets are fine).
I hope you'll consider supporting this walk that I'm doing for the first time. To meet locals like me and support research for this rare condition. Thank you.
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