One Year Being Rare With ITP

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I took this photo the morning of May 1st, 2014. That giant bruise on my elbow came from bumping into a countertop at work the day before. I had 5,000 platelets and had no idea that I was at risk of dying. Looking back, my ignorance kept me calm. It also put me through hell as I dealt with doctors who didn’t know how to handle my rare disease. The six days I spent in the hospital were the most challenging days of my life. Looking back, I can definitely say I am a survivor of medical malpractice and ignorance.

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The ER doctors, nurses and staff were awesome. A paramedic came in to put the port in my wrist. He was funny, I remember him looking at me and asking, “Are you brave?” I was like, “What?! Yeah, I can be.” Before I knew it, the port was in my wrist and it didn’t hurt. He couldn’t believe it and neither could I. However, when the nurse was asking me questions, I started to feel faint. Realizing I had this giant thing in my wrist started to get to me. Luckily I held it together after a few minutes of cold sweats. I recall telling everyone that I felt perfectly fine. I wanted to go back to work!

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Everyone couldn’t stop looking at my legs. They were covered in bruises and petechiae. I had seen a dermatologist back in March who told me that I was overloading my legs between working and weightlifting. Despite buying numerous pairs of compression socks at his insistence, they did nothing. Now I was looking at them and thinking that they were an alarm all along. Every doctor I encountered in the hospital was blown away by the bruises and my green ankles.  I had so much pooled, leaking blood it was scary! I recall a very nice doctor who always came into my room wearing killer heels. She was an Internist and a huge boost to my morale. She allowed my mom to sneak me out one afternoon in a wheelchair so I could sit by a pond and watch the wildlife. Her goal was for me to look as normal as possible given my condition. I appreciate her kindness and concern, many of the doctors I encountered were in and out. I don’t even remember most of them introducing themselves. Yet, she was there every single day trying to calm down my parents and helping me feel not so ugly since I was a variety of colors.

Every day I was subjected to multiple blood tests. My second day in the hospital, the second hematologist I saw seemed to be convinced I had HIV. He ordered a blood test and I begged for them to poke me later in the afternoon because my veins were so frail. They ignored my requests, so the photo below is the aftermath. After six long days, I was released and sent home with only 18,000 platelets. I remember being upset because I couldn’t understand why they wouldn’t climb.

My poor arm after being stuck with 3 needles in a few hours.

My poor arm after being stuck with 3 needles in a few hours.

Eventually, my platelets got up to 23,000 and I felt slightly better. My awesome neighbor Jill, took me to a suspension yoga class. It felt good to just stretch and move some muscles that got stiff and sore from being in a hospital bed for days. I reconnected with people I hadn’t talked to in years via social media. I tried to be “vocal” about my struggle because I was hoping I would find someone who could say that they went through the same thing. I had found the PDSA and made connections on Facebook. Finally, I found my ITP family who I could call on anytime.

After two weeks of dealing with ITP, I made my way to the University of Miami and met Dr. Ahn and Dr. Dudkiewicz. They were all about trying to find what caused my ITP and confirming my diagnosis. I was so glad that Dr. Ahn wasn’t going to put me through a bone marrow biopsy since I was every color of the rainbow. Plus, the needle didn’t sound too appealing (I was terrified). My doctors made me feel like we were going to try and take control of this disease before it takes my life.

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So this is where my story takes a nasty turn. After reviewing my health history and family background, we looked at my life. Besides ITP, I was healthy. I had the best doctors at the University of Miami scratching their heads. Then we went over what I did for a living. I was a Senior Account Specialist for Enterprise in the Commercial Truck division. Unbeknownst to me, I was being exposed to extremely toxic fumes and chemicals at work. I would 55-60 hours a week around diesel trucks and used chemicals that were known to cause blood disorders according to the material safety data sheets (MSDS). My doctors requested to view the MSDS and that’s when they put it all together. I felt sick to my stomach, I was being poisoned and I had no idea!

With Christine Taylor, the granddaughter of the founder of Enterprise.

With Christine Taylor, the granddaughter of the founder of Enterprise.

My doctors determined that I could no longer work in that environment and be exposed to toxic chemicals, it broke my heart. I was wildly successful at my job. So much, that I met the future CEO of the company, Christine Taylor, just 11 months in. I was the number one sales employee in the Southeastern US for Commercial truck. This earned me a visit with executives from corporate headquarters in St. Louis. I was crushed that I couldn’t go back and continue to help the company grow. My doctors said I could work in an office building away from chemicals and large crowds. I knew a lot of positions existed within the company and I was well qualified for them.

Ironically, when Enterprise became aware I had to undergo chemotherapy and that my doctors had made a connection between ITP and toxic chemical exposure, no jobs were available. The company dumped me like I was trash. They played games with me until they laid me off, claiming there were no positions. Funny thing is, I still had a lot of great friends at the company. Two weeks after they laid off their top truck employee, positions were posted on their internal career site that would have been perfect for me. The bottom line? Enterprise doesn’t believe in backing up top employees. If you are a rare disease patient and work for them, prepare to be dumped!

So one year later, this journey continues. I faced a lot of issues medically. I used chemo off-label. I started this blog and created a social media presence. I travelled to Washington, DC to advocate for rare disease patients like myself. Now I am headed to law school. The last 365 days have challenged me in ways that most people would never be able to understand. I dealt with feelings that I can’t even describe. I had to put up with parents who were hysterically looking for answers when there were none. I sat in doctors’ offices and left them dumbfounded. I have defied the odds.

With one year as a rare disease patient under my belt, I am looking forward to the future. I plan on attending rare disease week in DC next year, especially since I will be losing my health insurance in the next few months. I have no idea what ITP has brewing, but I am ready to face it.

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