Jaide Alexyn


My name is Jaide Alexyn, I am twenty-two years old and am originally from Buffalo, New York. I currently live with my significant other and two beautiful cats in New Orleans, Louisiana. I recently graduated with my bachelor’s degree in Community Mental Health and have just begun a career as a guest educator working for Enriched Schools. I am currently out of work until I am in remission, but as soon as I get the clear I will be headed back into the work field.

I was diagnosed with TTP on January 27th, 2021 when I collapsed on my porch walking out the door. I had begun to feel sick on my birthday on January 10th, 2021. I noticed earlier that day some random bruising on my body, and was feeling super tired, I ended up taking a five-hour nap that day and doing nothing. It wasn’t till later that week, around the 14th of January, I started to get super bad migraines that had resulted in me completely losing my vision in the right eye one night. I was terrified. I thought I was just having a panic attack, so I put myself to sleep. I woke up the next morning able to see again but, still with a horrible migraine. I called into work and stayed in bed which was highly unusual. I slept all day, cried in pain, and was taking Tylenol and Ibuprofen hoping it would relieve something. It wasn’t until few days later I noticed the purpura on my arm while working, and I looked it up and decided it was time to see a doctor. I also had a super unusual heavy, long period that was not going away by all means.

I scheduled a doctor’s appointment for the 27th early morning, got my blood work done and continued with my day. I went grocery shopping, cleaned the house, just my daily routine. Around 7 p.m. I got a call from the hematologist and was notified I was in critical condition. But I was told if my symptoms worsen in 12 hours go to the hospital, otherwise they’ll have me come back tomorrow for more work. Well, I called my aunt who is an RN and gave her my lab results. I was at 7.2 hemoglobin, 2.09 RBCs, and 12,000 platelets. She said I needed to head to hospital immediately.

I went home, packed up a bag for the hospital because she said it would take some time. But, as I was packing my items, I felt my body go numb on the right side, so I decided to walk out the door to go pick up my boyfriend so he could drop me off at the hospital. When I opened the door, I collapsed. I couldn’t get up and now at this point, I couldn’t even think. I was confused, I thought I was having a stroke. I was trying to get my phone, it was beyond difficult, I had no feeling, and I couldn’t make out words. I get a hold of 9-1-1 and the operator was having difficulty understanding me, she finally got my address, which I was attempting to express but for God’s sake, I couldn’t. EMT finally arrive they weren’t the friendliest to me, at one point I said I was going to drive myself. They finally decided to drive me to Ochsner hospital after about 15 minutes of me being strapped down and being told I’m just having a panic attack.

We get to the hospital and this is when it becomes a blur. They got a hold of my boyfriend and said where I was, and that I was unable to speak and was speaking gibberish at that. He said that’s highly unusual, if I am having a panic attack it is usually my breathing, I have difficulty keeping up with it. He then explained something about how I just got a call about critical blood work. They ran some tests and were shocked by the results. They ran another test, while also putting me through an MRI to check the bleeding in the head. They found my cells cut in half and ruled out TTP. They called for an emergency surgery. I don’t remember much other than freaking out because of a plastic bag over the head (the sterile sheet) for the triallists catheter, seeing blood everywhere, and screaming.

I woke up two days later in ICU at 3am confused as hell. My family flew in from New York, and I knew something wasn’t okay. When I was first told, it took me a few days to really understand the actuality of it all. Physically I felt pain, emotionally I was drained. I was in denial for a few days, it wasn’t until I relapsed five days after being discharged from the hospital, I realized this is serious. I must deal with this for the rest of my life. I am/was twenty- two when I was first diagnosed with TTP. I had never heard of TTP before in my life, nor had any of my friends or family members. My family is having a difficult time accepting the fact I won’t move back to New York, and I want to continue my life and treatment in Louisiana. I feel like it’s been hard on them but, they have been doing an amazing job being emotional support for me and being financially helpful as it has been impossible to work right now. They are strong and supportive no matter what.

I have been receiving the therapeutic plasma exchange each day, and after my numbers are reached, I will continue onto rituximab one day a week, for four weeks. My doctors also have me on steroids, and mentioned chemotherapy if these other treatments don’t go as planned. My doctors have displayed many options and have been answering my questions as best as they can to their knowledge. I would like to seer other hematologists just for a second opinion, because I feel like I am not getting all my questions answered. I learned about TTP through a lot of my own research online, and through my hospital portal links. I have been trying to read up on stories, articles, and research so I can understand how it all works, what I can do etc. This is just the beginning of my TTP journey, and I am hoping to get back to my life soon enough. I miss it. But, for now, I will stay strong and take my time to heal emotionally and physically.


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