My name is Christine Carrion, I am 34 years old and I live in West Haven, CT. I am a nurse, and married with three children.
I had been feeling “strange” for about a week. I was having “different” unexplained symptoms. My urine was rust colored, my stool was tan, I had what I thought was a rash on my thigh and the left side of my face was numb and slightly swollen. I remember calling a friend and having her run over because I wasn’t feeling safe. I went to the ER that night to have things checked out and was told that I needed to see a neurologist. That weekend, my husband and twins went to Niantic for the weekend while my eldest daughter had a sleepover party with some friends. My daughter and her friends made dinner and watched movies. I noticed that evening that I had no appetite and was extremely tired, so I went to bed early. The next day I remember waking to see my daughter’s friends leave and then my daughter and I stayed home and watched movies for the rest of the day because I was in and out of consciousness. I did notice that the so-called rash was changing color and spreading. That evening, I went to bed early again and slept till late morning the next day.
I spoke to my husband and stated that I was feeling “strange”, but my daughter and I would drive out to him and my twins for dinner that night. When I was driving to the highway, I began feeling very tired and suddenly my eyesight went to tunnel vision. I quickly turned the car around and went home. I called my husband and then my primary doctor’s office to let them know what was going on. The doctor had stated that I should come to the office in the morning or go to the ER that night if I felt the need to. My husband came home right away because he stated, “I sounded weird on the phone.” I refused to go to the ER and just wanted to sleep.
At this point I had a pounding headache, light was starting to bother my eyes, and I just wanted to be in a cold room. The next morning, my mother came for the twins and my father came to take me to the doctor’s office because I knew I would not be able to drive. The headache had become worse, my sight was still tunnel vision, and I was so tired that I just wanted to climb back into bed. I was sent for blood work and a CT scan before being sent home. This day is very fuzzy in my memory. But I will never forget July 8th, 2013 ever!
I fell asleep as soon as I got home but was woken by the sound of our phone ringing. It was my doctor. He stated the CT scan was fine but I needed to get to the hospital ASAP. My platelet count was 6,000 (normal is 200,000 to 400,000) anything below 10,000 could leave a person at risk to hemorrhage. I remember telling my eldest daughter to pack a bag while I called my mother. I don’t remember much after this until I was brought into the ER. Upon arrival, I was told the head hematologist of the hospital was in the lab waiting for my blood. I remember thinking he must be really bored to be hanging out in the lab just for my blood. I remember asking that people whisper to me when talking and that all lights be off in my room, I just wanted to go to sleep. The “rash” was now purple and all over my body.
The hematologist came into my room with his team to explain that I had a rare blood disease and would be there for a couple of weeks. This was a disease I had never heard of. My family and I were told of the course of treatment that was needed to save my life. I remember thinking this is it, I can’t do this, and I am going to die today. I even told the entire operating room to tell my family that I loved them and that I said goodbye. My platelets were now at 4,000. I cried a lot at this point - I didn’t know anything about this disease, but I did know it was bad, and I was fully aware of how bad it made me feel.
I started my daily routine of Plasmapheresis (or Plasma Exchange), along with a slew of medications. Plasmapheresis is a process in which the liquid in the blood, or plasma, is separated from the cells. A machine removes the affected plasma and replaces it with good plasma, or a plasma substitute. At night, I would receive my treatment. About 8 bags of plasma was needed for each treatment and the process took a total of 2 to 2.5 hours. I also received packed red blood numerous times when my hemoglobin and hematecrit was low and IVIG, which is a blood product pulled out of blood for the antibodies.
My stay at the hospital was filled with a lot of emotion. Family and friends were continuously at my bedside. While in the hospital, I relapsed two additional times. The last time was the worst; I remember curling into a ball and not speaking to anyone that day. I asked that no visitors be allowed in and watched as the room “moved” (literally) around me. I do remember telling the doctors that this was the time to pull out any tricks they may have hiding in their back pockets. I had gone for numerous CT scans, ultrasounds, treatments, but now we would start double pheresis and then Rituximab (a chemo agent). I also had a bone marrow biopsy done.
I spent a total of 5 weeks in the hospital. My husband stayed in the hospital with me and I had two sleepovers with my children. Luckily, my parents were able to take care of my children while I was in the hospital. They visited every day, except for a few of the really low days. During my stay, I tried to go out to the rooftop garden as much as I could to get out of the hospital atmosphere. I have made lifelong friends with some of my caretakers in the hospital.
When I was first discharged, I continued to see a doctor everyday and lived at my parent’s house because the disease had touched my heart, kidneys, and liver. I was recouping and rebuilding my body.
The journey of TTP is both physically and emotionally challenging, not only for the patient, but their loved ones as well. We continue to fear its return. I am very blessed to have such a loving family and I cherish every moment I have with them. I will be forever thankful to those who donate blood and I pray for a cure with the hope that no one else will have to feel the wrath of this disease.