Hello my name is Whitley Helander. I am 27 from Center, Texas. This very rare & unknown disease changed my life. 2 years ago, I started having crazy back pains and was unable to keep anything down. Doctors in my area thought it was a gallbladder issue. This went on for 3 months, I was miserable. I remember times thinking I was having a stroke, but then I would think: I am only 25, there is no way! On April 11th, 2016 I was laying on my couch unable to fully move, text, or speak. I was in tremendous amounts of pain not knowing what was happening. My boyfriend found me unresponsive and drove me to the nearest hospital. No one knew what was happening to me, including the doctors.
I remember laying in the hospital in Nacogdoches watching family & friends come to see me. I was unable to speak. It was like I was dreaming, but could hear everything being said. The looks on people’s faces and the tears when they saw me were confirmation that it wasn’t good. The neurologist thought I was playing around. Everything came to light when a hematologist came to see me and told my parents if I wasn’t moved QUICK I would die. The ambulance ride to Dallas (4 hours) was the absolute worst. I know that poor man riding in the back with me kept getting really crazy looks. Getting to Dallas, the last thing I recall was my amazing Grammy putting coke on a sponge and putting it in my mouth because the doctors said I couldn’t have it and I was really thirsty and upset. Next thing I know it was a week later.
I woke up with tubes coming out everywhere & someone brushing my teeth. The doctors were thrilled to see me awake, saying I was a miracle and the nurses hugging me so happy to hear my voice. (When you wake up to people so happy to see you that you’ve never seen before and realize you’ve missed a whole week of your life, it gets a little strange) It really didn’t sink in until later that night when I was talking to my mom that she told me I almost died. I finally realized what exactly was happening. 12 Hours after I arrived at Baylor Scott and White in Dallas, I was put on life support. I was heavily sedated for 7 days. The remaining days were very strange. A lot of highs and lows and “I don’t know”s.
I was released from the hospital on Wednesday, April 27th. I had a new outlook on life. Little did I know 8 days later the nightmare would return. I went to the doctor in Tyler before work to have my labs drawn. I got to work and received the call that my platelet count was at 90,000 (just 3 days sooner they were at 213,000).The rest of the day was just a huge panic attack. My brother and I arrived back in Dallas that Friday night. It was kind of cool because I was unconscious for all of the admitting and CTs and ultrasounds before, so I actually got to experience it this time. My central line was put into my leg which prevented me from walking this time. All I did for a week was lay in my hospital bed. I began to become very depressed and question a lot of things. The doctors were doing all they could but still a lot of “I don’t knows”. Will this come back? - “I don’t know”, what caused this? - “I don’t know”, will I have kids? -“I don’t know”. With my disease that’s all I get -“ I don’t know”.
These I don’t knows created a lot of pain and depression and post-traumatic stress. Everyone would say I was “lucky”, but I didn’t think so. A lot of “Are you okay?” Physically I was “okay” (prednisone is the devil) but mentally I was not. I was drowning. I focused and obsessed on things to take my mind off of TTP, but when the lights went out and the voices of the day were gone it would return every night. I worked and went to school as if nothing had happened, but I was different, my life was different. The strokes did a number on my multitasking skills and focus. I shut a lot of people out because I had to be strong for everyone around me. In my brain they went through it too so I had to be strong for them. In the end that was my biggest mistake. I should’ve reached out for help. I should have talked to someone. I just wanted to be alone.
Two years later- my counts are still good almost perfect. My hematologist still sees me every 3 months. My relationship with God grows every day. I am ashamed that I turned away in the tough times, but he is a loving and merciful God that has a plan for everything. I prayed for God to move me where he needed me. I am now starting school all over to get a nursing degree and becoming a pediatric oncology nurse. I want to help children who were in my situation. Through the plasmapherisis and the chemo, my nurses were my positive light. I want to be that for a child going through the crazy pain and confusion. I am blessed. Some people with my disease don’t make it, so I said all of this to demonstrate that TTP is very real, very rare, and very serious. There is not enough research or knowledge.
Awareness saves lives. I could’ve possibly been in better shape if there was more awareness, and a lot of people would still be alive today. Mental issues are also very real. Don’t be a hero, ask for help.