In April 2013, I was a healthy and happy 28 year old in the midst of finishing my Masters Degree, wrapping up writing my thesis, and planning my wedding. While I was at work on April 23rd, I began to have a headache and intermittently had a blurry spot in my vision. The headache and spots persisted/increased in intensity over the next few days, including numbness that would run down my forearms and nausea. I talked to my fiancé and my mother and we all agreed that I should go see a doctor. After speaking to my primary care doctor, she believed that I may be experiencing migraines. After seeing an optometrist on April 26th, to confirm I was not having an eye issue, I was told that my vision was great and in his professional opinion I was experiencing “migraines with aura” and to follow up with my primary care doctor. The headaches continued through the weekend. When I visited my primary care doctor, I discussed my symptoms and she said that in her professional opinion I was experiencing “Textbook migraines.” She wanted a second opinion so she sent me to a neurologist and instructed me to stop taking my birth control since migraines in addition to birth control can increase your chances for stroke. The headaches continued to get worse over the next few days and were not relieved by over the counter pain medication.
By May 2nd, I noticed that I started to bruise quite easily, more so than usual. I had bruises on the backs of my calves and on my upper thighs. I attributed this to running into things at work (a common occurrence due to my clumsiness). That day, I met with a neurologist at Lahey Burlington. She did a battery of neurological tests and, in her professional opinion, I was experiencing “Textbook Migraines.” To ensure there was not a larger problem, she ordered an MRI scan. The mild/moderate headaches, light sensitivity and lightheadedness continued and intermittently, my heart would begin to race for no apparent reason. I attributed this to my body getting used to no longer being on my birth control. I began to notice tiny pin prick sized bruises on my thighs and chest, I thought it was heat stroke from the night before, and at this point my legs were covered in large bruises. My fiancé and I joked that he must have beaten me up in our sleep.
On May 7th, I went for the MRI. In order to put coloration into my veins the physician’s assistant needed to tie a tourniquet very tightly around my arm. While it pinched, I didn’t think anything of it. The next morning I woke up with the most extreme headache I had ever experienced thus far. It lasted the entire day, Tylenol did nothing, and the nausea was terrible. That evening my fiancé noticed a large rectangular bruise on my upper arm. We realized it had been made by the tourniquet. That evening, I was unable to sleep due to the headache. I called the neurologist the moment they were in the office for the day pleading for a prescription. I was prescribed two different types of migraine medicine and started to take it as soon as I could. While these provided some relief, I still had headaches and the bruises continued to get worse. The MRI came back completely clear.
My fiancé and mother (a retired lab technician) suggested I call my primary care doctor again to have some blood work done because of the bruising. I met with my primary care doctor on the morning of May 10th to discuss the bruises. She said that I was probably fine, but she would order some blood work to double check my levels. At 8:15 that evening I received a phone call from an on-call doctor. She said that my platelet levels were at 19,000 and she advised that I go to the ER immediately. By the time they drew more blood in the ER, my platelet levels had dropped to15,000. I was taken into a bay almost immediately. The ER doctor explained that they believed I might have ITP, but they were waiting to hear from the on-call Senior Hematologist about my blood work. A few hours later, a team of people rushed into my emergency bay and Dr. Weiner (the senior hematologist) started asking me questions like “Who is the president? Where are you? What is your name? What is your birthday?” He explained that he was shocked with how coherent I was with my platelet levels dropping so quickly. He explained to my fiancé and I how he had just taken a look at my blood samples, and that he believed that I had TTP and needed to be treated immediately. All bedside manner went by the wayside while he explained what could happen to me if I was not treated and what they were about to do to me. It was the most intense and frightening 10 minutes I had ever experienced in my life. I began to have a panic attack and the nurse promptly asked if I’d like an Ativan to help “take the edge off.”
They immediately wheeled me away from my fiancé and into the MICU where I was attacked by a team of people. Pads were attached to my chest and belly to keep track of my vitals. They laid me down and explained that the next few minutes were going to be “very overwhelming.” They cleaned down the skin on my neck, injected lidocaine, took an x-ray to locate my veins, and inserted a large intravenous catheter. After they dressed the area, my fiancé was allowed to come back into the room. Before I knew what was happening, a machine was wheeled into the room which the lines in my neck were connected to. At about 2am on May 11th, I had my first plasmapheresis treatment. The first treatment took about three hours to complete. After that first treatment, the headaches disappeared and have not surfaced since. That evening, I was given a room where I would stay for the next week. I had a treatment each morning for a total of 7 treatments and was on enough prednisone and Ativan for an army of grown men. The whole week, I kept explaining how I needed to be released before Saturday because I was graduating from Graduate school and nothing was going to stop me from walking across that stage. On May 17th, my platelets were up to 175,000-198,000. Late that afternoon, with the line still in my neck, I was released.
On May 18th, with the help of Ativan, lots of makeup, and my amazing fiancé I got myself to my graduation. In an Ativan haze, I proudly accepted my degree.
On May 20th, I began visiting the Sophia Gordon Cancer Center at Lahey Burlington for regular blood work and flushing of my lines. While there, I was able to meet another TTP survivor who worked in the building. It was amazing that I had the opportunity to meet someone else who had gone through the same experience.
I was out of work and with the line in my neck until June 6th. Once it was removed, I felt like I was free from my diagnosis, and no longer a hospital patient. I continued to have intermittent blood work and now, a year later, Dr. Tuncer at Lahey Burlington believes that may be my only bout with TTP.
I’m afraid it will happen again when I want to have children, but I have to stay positive and know that I live close to medical professionals who can help me, particularly now that I know my warning signs.
Positive Thoughts and High Platelets,