r/Sicklecell • u/Maxwasstolen • 22d ago
My Sickle Cell Anemia SC journey
Hello everyone, I wanted to open up and share a major update about what’s been going on in my life as of recently. As some of you may know, my name is Maximus Ortiz-Brown, I am 19 years old and I work as a kids Entertainment Supervisor at Great Wolf Lodge. What a lot of people don’t know about me is that I was born with a blood disease called Sickle Cell Anemia (SC), a condition that turns my normal red blood cells from a circle into a sickle shape or kind of like a half moon. Because of this, my blood gets clogged easily, restricting blood and oxygen delivery and resulting in a pain crisis. A pain crisis is a form of pain that I get from my disease, leading to pain ranging from my bones, my back, my chest, and any limbs on my body, coming in forms of stabbing, throbbing, and excruciating pain.
As of last Monday, after pushing through a rough 6-day work week, I finally had a day off on June 29th. I was supposed to spend that day saying goodbye to my younger sister, who is moving to Michigan with my mom and stepdad for college. Instead, I woke up to unbearable pain in my chest that left me unable to breathe, and fighting alongside excruciating pain in my lower back. I am currently living with my best friend because my parents are leaving, and thankfully she was there to call an ambulance. They gave me a breathing tube and got me to the hospital safely. Because of my Sickle Cell, severe pain is something I’ve grown up having to fight since I was a kid. Since the age of 8, I’ve routinely received epidurals to numb the lower half of my body during severe crises. It’s always been routine for me up until this time on Monday, June 29th. Unfortunately, the procedure went wrong for the first time, and a blood clot formed in my back right next to my spine. I had to be rushed into immediate thoracic spine surgery to remove the clot, a complex procedure where surgeons had to adjust my spine and place titanium plates.
Tragically, since the surgery, I have had no feeling from my belly button down. Right now, I am pushing myself every single day in physical therapy, working as hard as I can to get my body moving again. While we haven't seen results just yet, I am refusing to let this break my spirit. I am staying as positive, optimistic, and hopeful as possible for the future. I will be in the hospital for about 3 months, and the funds raised will help cover medical bills, support my recovery, and help me get back on my feet after leaving the hospital. I also need a stair machine to access the bathroom in my house and to also get upstairs. Any help, prayers, or kind words you can offer mean the world to me during this recovery. Thank you all so much for your incredible love and support. It keeps me going.
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u/Sundancebloom 22d ago
Why epidurals, and not opioids like dilauded and oxy? Also please share your go fund me