In 2016 I had just delivered my second child, a gorgeous baby girl. Things were exciting and stressful for our family; my husband and I were celebrating two years of marriage, we had a two year old son, and moved to a new state! We purchased our home and began the crazy years of two toddlers, many pets and memory making.
After returning to work, I planned a road trip to meet my college friend and introduce our little girls.. I wasn't feeling great on my way out of town so I made sure to stop at an urgent care facility - my throat was hurting, I was fatigued and I didn't want to bring illness to my friend or her kids. I met with a physician, tested negative for strep - was diagnosed with a virus and was on my way.
I arrived to meet my friend and continued to feel awful; my throat hurt was hurting, I had excessive fatigue and I felt as if a fog had taken over my brain. During that short weekend visit I left the BBQ my friend hosted and went back to her home I was so unwell. I slept for about 14 hours with my 4 month old.
I decided to leave early that Sunday, drove 4 hours, and arrived back home feeling worse than ever. I noticed these red dots on my body that had developed and decided to go back to urgent care the following morning. I returned for another visit and the urgent care physician immediately ordered a CBC after seeing the petechiae that had developed.
I sat in that exam room wondering what was going on, why the long wait, why the sense of urgency? The physician returned and explained that my platelet levels were extremely low and I needed to get to the hospital immediately. I was not allowed to drive, and had to call my emergency contact as my platelet levels were 7,000.
My husband picked me up from the urgent care facility and drove me to the hospital where I waited four hours to get in touch with a hematologist. Once the clinic had finished the hematologist arrived, after further review and discussion I was transferred to the ICU.
I remember multiple physicians coming in and out the room urgently trying to decide what to do. Luckily, I have a close family friend who is a hematologist/oncologist who was able to discuss my labs and symptoms with the onsite physician. I was then transferred to the University of Minnesota via ambulance.
So many events after this were a blur, I arrived at the hospital, was sent to the ICU where I was medicated and rushed into interventional radiology for catheter placement; I then started plasmapheresis in the ICU. As soon as the treatment was initiated I went into anaphylactic shock because I was allergic to the plasma. This caused major complications in my treatment and the hospital had to order special plasma called “Octoplas” that been washed more thoroughly so I could receive my treatments. I’m so lucky this is now readily available today.
I spent ten days in the hospital receiving treatment, dealing with complications including a blood clot and seeing tons of physicians and nurses interested in learning about my rare disease. I couldn’t remember the day of the week, the president or understand why this was happening to me.
The PTSD I experienced after leaving the hospital was extreme, I was taking high doses of steroids which made my mood unstable, was receiving chemotherapy to put the disease in remission and trying to cope with two small children, one being a four month old I couldn’t care for. I felt lost.
The number of complications, ups and downs and trauma I suffered during this time was insurmountable but looking back I think it only made me stronger. I more fully recognized the importance of happiness in life, graciousness to the village that is my family, and the beauty that my children could bring to each and every day. I spent twelve weeks recovering and returned to work – learned how to compartmentalize my disease through therapy and lived life more fully.
In February 2019 I relapsed, I truly thought I would never experience the horror of TTP again but it reared it’s ugly head. I returned to work July 2019. I refuse to allow this disease to control me. Some days I can’t help but think about an early death, my children without a mother or the long term effects of this disease on my brain; but MOST days I push forward and look to a place of gratitude – a place of confidence and most importantly a place of remission.