#ttpsurvivor

[jen-19-blog1]

My TTP Story

I wrote this and submitted it to a foundation that helps fund research to know more about TTP. I was diagnosed with TTP on Halloween of 2017. This is my story:

My name is Jennifer Rivera. I live in a very small town named Beasley in Texas. It is so small that if you drive by it and blink, I promise you will miss it. I am currently 24 years old, a recent college graduate from the University of Houston, and live with my parents. I have an older sister and a younger brother, which makes me the middle child. I am also in the process of getting hired as an elementary school teacher in a nearby district. I majored in Education because I finally decided to stop doing what everyone told me to do and followed my heart.

Halloween of 2017 is a day that I will never forget. I woke up with what I thought was a sinus infection, but I couldn’t go to the doctor at the time because I had to go to my Literacy for Children class. I decided to suck it up because I thought it was just a sinus infection since I always struggled with allergies. I honestly just remember feeling as if my head was going to explode because I had a really bad headache and flu-like symptoms. I got to class and felt like I was going to scream because of how much pain I was experiencing at the time. I had to leave in the middle of class because I could not handle how much pain I was in. I decided to go to urgent care because I did not feel well, but I was not comfortable driving because of how much pain I was in. So, I decided to call my sister because she, an accountant at the time, was off that day. She picked me up from school, and she drove me to the nearest urgent care.

When I got to urgent care and finally got in to see the doctor, I explained to her my symptoms. I was luckily wearing sandals at the time, so she was able to see the petechiae on the tops of my feet. She also noticed the gnarly bruise I had on my arm. Because of these symptoms, she decided she would run a CBC (complete blood count) on me. My platelets were at 11K at the time. Yes, you read that right, 11K. They are supposed to be above 150K. I did not know what she meant by this. I thought, “Okay, maybe I need to eat more protein?” Boy, was I wrong. She told me that I had to go to the hospital’s emergency room department immediately. Of course, I started hysterically crying. No one in the entire world wants to hear that they are to go to a hospital immediately.

Upon arriving at the hospital, I did not think I would get admitted. I thought I would just get checked out, be given medicine, and sent on my way. The weird thing is, that I saw a woman drinking tea out of a big hospital cup and told my sister, “I wonder how you get one of those cups. Do you think they’re just for patients? I really want a cup like that because it can hold so much water.” Literally 30 minutes later, a doctor came in to tell us that I was being admitted. When I got into my room, I finally did get a cup but I did not want to get a cup that way. The following hours were spent being wheeled around and getting tests done. I had a chest x-ray, abdominal ultrasound, an MRI, and what felt like dozens of tubes of blood being taken out. I noticed the bruises that I was left with when blood would get taken out of me. I looked like I got into a fight with a boxer and lost miserably.

Hours later, my parents and brother came to join my sister and me in my hospital room. My mom brought me some of my favorite things like my fuzzy socks and trail mix, and my brother made sure to take my backpack out of my car so I could watch Netflix on my laptop. I was so happy to have them with me. My mom looked like she had been crying, which definitely hurt my heart because no one wants to see their mom cry. My dad looked mortified to be in a hospital because he does not like (even more so now) hospitals. A few minutes after my parents arrived, my hematologist came in to talk to us. She sounded very serious, which scared me. She told me that my platelets were at dangerous levels and that I could have easily bled out if I were to get a minor cut. She also told me that with the lab tests that the hospital staff ran, I had an autoimmune disease called TTP. She told me that the best treatment option would be for me to get an intrajugular catheter and go through plasma exchanges. Of course, I did not know what any of that meant at the time. Later that night, after my family left, the catheter was inserted into my intrajugular vein which runs through the neck. When the catheter was being inserted, I was crying the whole time because of how much pain I was in. I thought the headache that I had experienced was awful pain, but the insertion of the catheter was much, much worse. My nurse that evening, Nurse Beth, was rubbing my hand reassuring me that it was almost over. When the catheter was in, I remember feeling so low. I thought I looked hideous with the catheter in my neck, and I remember being so uncomfortable. I think I got about 30 minutes of sleep that night.

The next day, I was alone because I told my parents I did not want them to spend the night in the hospital with me because I knew I was going to be miserable. I woke up crying. I missed being at home, I missed being in class, I missed my pets, and I especially missed not being connected to an IV machine. That night, I underwent my first plasma exchange. My nurse, Tony, gave me Benadryl which knocked me out. I was asleep through this first plasma exchange, so I do not remember much about it. I just remember waking up as the Astros won the World Series and that I had to wear a hideous mask for most of the treatment. The following days resulted in being visited by my family, me watching TV, me doing homework and the gruesome plasma exchanges. I was happy that my platelet count was going up, but I was sad that I had to endure the plasma exchanges.

Day four of five of being in the hospital was a nightmare. I was going through my plasma exchange. For every plasma exchange, I was given 10 bags of plasma. I was given the Benadryl so I would not have an allergic reaction to the plasma, but bag 9 out of 10 gave me a horrible reaction. I looked at my palms and they were breaking out into hives. My nurse, Jen, had to stop the machine and gave me the other half of the Benadryl shot. The hives were not getting any better, but luckily I could still breathe. I remember being SO itchy and having hives all over my body. I could not stop scratching, which would make it worse. I was given the maximum dosage of Benadryl, but it would not work. Between the hives, the pain I had with the catheter, and the Prednisone that was making me swell up, I was not a happy person.

I was very fortunate enough that the hives were the only pothole I endured at the time. I was released on November 5, 2017, which is now the day I celebrate my remission anniversary. The following months after my hospital release was consumed by anxiety that I was going to relapse again. It was also consumed by lab tests and hematologist follow-ups. I was getting labs done every week, but I am now getting labs done every 3 months. I was on Prednisone from November to March of the following year, which was a big factor in the depression that I had following the hospital. I ultimately gained about 50 pounds because of Prednisone. I knew that I should have been fortunate to be alive and that I should take this as a second chance at life. While I tried to make a conscious effort to look at it this way, my depression did not let me.

The day after Christmas, I was in a head-on collision. My mom was the one driving, and I was the passenger. This caused my depression to be even worse. I thought to myself, “Okay, well I almost died twice, why didn’t God just kill me?” It took me about 8 months after our accident for me to get help for my anxiety and depression. TTP is something that I still think about a lot. I am always worried about relapsing, and I am always nervous when I get blood work done. I cannot relax until my hematologist calls me and tells me that I am still in remission. I know that while I do have it better than most because I am a survivor and did not die because of TTP, I still cannot help but be nervous for the future. I try to take it day by day, and some days I completely forget about TTP. Other days, it is a constant in my mind.

I am fortunate enough to not have relapsed as I am writing this. I am fortunate that I have the hematologist that I do. She is definitely the best hematologist that I could have asked for. I am fortunate to have had the medical team that I did in the hospital. I am thankful that I am alive. I am thankful to still be in remission as I am writing this, and I am especially thankful for the second chance that I was given at life. I am not letting TTP bring me down. I am continuing on with my life and making the best out of it. I am looking forward to the future that I have. I am looking forward to teaching little humans the wonders of the world, and I am hopeful that one day in the near future we will know more about TTP. I know that in the future, I may relapse but I think that if I can kick TTP’s butt once, I can do it again. Thank you for taking the time to read my story.