It isn’t very often that you receive two missed calls and a voicemail from your doctor after work. In February of 2016, I found myself in that exact position. I called my doctor back only to learn that I needed to go to the emergency room as soon as possible because I was at risk for internal bleeding with a platelet count of 5,000. I immediately called my dad and we could not have imagined the journey that we were about to experience.
At the hospital, the doctor handed us a piece of paper that described ITP, but he himself did not have a lot of information. I was immediately prescribed Prednisone, an awful steroid, and told that I was a fall risk. I had difficulty understanding the gravity of the situation because I felt okay and the only thing that looked wrong with me, were the large dark purple bruises that covered my legs. That night, I was IVIG to boost my platelet count. My family and I had so many questions and did not believe that there is no cure.
After leaving the hospital, the blood tests, questions, and fear were endless. I had to go to the doctor once a week and most of these visits resulted in questions about possible treatments and tears because my platelet counts were not consistent. Throughout these moments, my family and I would cry together because we were not sure of what else to do. All we wanted was clear answers.
Eventually, I switched doctors and began to find more comfort in my treatment because my new doctor was very calm and did not rush decisions. At the end of May 2016, I had my first treatment of Rituxan, which requires sitting in a chair for six hours once a week for four weeks. In August of that year, I was completely off Prednisone. Unfortunately, the following year, I was forced to do Rituxan for the second time because my platelet count began to dip in the low 20,000. Luckily, this is the last treatment that I have had. My platelet count now remains stable, but there is always the fear that I will come out of remission and be forced to go through the process once again.
Throughout this entire journey, I wanted more information and I wanted to find volunteer opportunities. Through my search, I found the Platelet Disorder Support Association and saw that there was a support in Orange County. I also found out they were holding their 5th walk in September 2016. I was able to get in contact with Jody Shy, who connected me with Melissa, Cathy, and Leilani. I was so excited to meet women that could understand my experience. PDSA also provided many resources available. In July of 2017, I went to my first ITP conference in Chandler, Arizona. It gave my parents and I an opportunity to learn about different treatments and to meet many amazing people.
PDSA is very important to me because it allows for people to have all the resources they may need while going through this difficult and confusing process. I am now my own best advocate and am able to make informed decisions about my body. I am grateful to everyone that has supported me throughout the years.