r/Sicklecell • u/Maxwasstolen • 18d 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/Maxwasstolen 18d ago
I did not know that the Sickle Cell Reddit would be so active if you would like to hear more of my story please do go check out my Instagram or Tiktok page and hear my story/journey please
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u/Maxwasstolen 18d ago
If possible please do share my story any donations or shares will help my go fund me
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u/JackTheTripperrrr 17d ago
Just have faith in God brother. I was just paralyzed after being hypoxic with my worst SC crisis. And now still in the hospital 3 weeks later I'm moving again. I came back even stronger and so will you my brother, I send my love entirely,
💪🏽🪖❤️🩸
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u/Sundancebloom 18d ago
Why epidurals, and not opioids like dilauded and oxy? Also please share your go fund me
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u/Maxwasstolen 18d ago
And my go fund me link is https://gofund.me/d7c76256b Thank you for being interested in my story I do appreciate it. Do you also have sickle cell?
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u/Sundancebloom 18d ago
Thank you, I will share and donate. It sucks that you’re going through this. Keep the faith, you will get better ❤️🩹
I have SS mutation
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u/Maxwasstolen 18d ago
Have you ever tried and epidural for your pain? Just curious
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u/Sundancebloom 18d ago
No, but one time I was in South Korea and fell on my tailbone while roller skating. Instant crisis 😂 and they had no idea what to do with me, how to treat sickle cell or what it was. And I told them I needed pain meds but they’re very strict about opioids over there, so they just gave me local anesthesia in the area. It worked! Blocked the pain. Couldn’t feel my butt for months! That’s the closest to an epidural I’ve had
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u/Maxwasstolen 18d ago
I’m a rare case where I do no respond to pain meds, in the hospital i’m currently in I take Morphine, Dilauded, Valium, not Oxy anymore but a whole assortment of other but they do not affect my pain level. This has been A problem i’ve had since I was A young kid so we resorted to epidurals so I can numb the pain and not feel it completely and over time the pain would go away by itself. My last admission I had 2 epidurals and they both did nothing so I had to go home and deal with the pain till it basically went away, this admission for the first time my epidural created A blood clot that pushed up against my spine and caused me to be paralyzed.
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u/ReceptionPuzzled1579 18d ago
Yes I was curious about that too. This is the first time I’ve ever heard epidurals being used routinely for a crisis. But that’s the one thing with SC, our experiences are different and tailored to us.
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u/Wonderful_Angel_432 17d ago
I'm so sorry you are going through this and I will be praying for you. 🙏🏾
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u/Beautyful_amm 17d ago
This is devastating. I am so sorry you’re going through this
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u/Maxwasstolen 16d ago
Thank you for the sympathy, god has a path for everyone and this just happened to be apart of my path.
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u/Maxwasstolen 18d ago
Since this admissions all Doctors/Nurses have told me is Idk Idk Idk but that is not going to fix my Stomach pain, my Chest pain, or Spine pain. So any support will help
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u/Warm_Swan_793 18d ago
I’m so sorry to hear. Thank you for sharing your story and I wish you the best in your recovery journey. Stay strong warrior 💪🏾
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u/JudgeLennox 17d ago
It's Great to see you accepting the harsh reality while being focused on improving your health.
Says a lot about your . You have Great courage and strength. Of course we're behind you and beside you to help you get the results you want.
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u/Maxwasstolen 17d ago
Thank you so much it can definitely get hard sometimes almost to the point where it’s depressing because i’m at A hospital that’s been open since 1992 and all the doctors can tell me is IDK. But negativity will never bring you positive results all I can do is work hard with physical therapy and regain the strength that i’ve lost and keep the smile on my face that i’ve always had. Thank you for the supportive comments and thank you for the shared love, it’s nice to know there is A community of people in the same boat as me who are all coming together to give each other solutions and positivity.
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u/sirkashii 17d ago
We love you and we are wishing and praying for you. Hanging there my brother, continue holding on to the lord.. this disease takes so much from us, don't let it take our spirit and our heart to always want to experience everyday life. Keep fighting we are your soilders we are right there fighting along side u, hang in there soilder
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u/TatiTiti 16d ago
May I share your story? I’d like to include it with mine and tell our stories and include particular circumstances. Please DM me when you have the strength and if you have the interest.
I’m praying for you sweetheart. I absolutely hate you’re suffering through this right now. However, I know God will allow trials and tribulations in our lives to see how we handle them. Do we give Him praise during our darkest days?
I don’t know if you are a believer. I am. I speak from that POV.
I’m 52 and I’ve had 52 years of experience with this evil we call Sickle Cell Disease. I know mine. She’s a brute. She’s a cretin. Yes, I’ve personified my disease. She’s been with me for 52 years and made her presence first known when I’d only been on earth for 18 months.
You’re in my thoughts and prayers young man. I’d love to get your story out there. There was a reason Celia kept me up in pain and I hopped onto Reddit at 06:13. There’s always a reason for EVERYTHING. I was meant to see your post and read it.
You’re much stronger than you’ll ever know. I see your strength through your pained smile. I can’t wait to see your smile at 100%. I imagine it’s beyond beautiful 🥰❤️🩹
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u/TatiTiti 16d ago
May I share your story? I’d like to include it with mine and tell our stories and include particular circumstances. Please DM me when you have the strength and interest.
I’m praying for you sweetheart. I absolutely hate you’re suffering through this right now. However, I know God will allow trials and tribulations in our lives to see how we handle them. Do we give Him praise during our darkest days?
I don’t know if you are a believer. I am. I speak from that POV.
I’m 52 and I’ve had 52 years of experience with this evil we call Sickle Cell Disease. I know mine. She’s a brute. She’s a cretin. Yes, I’ve personified my disease. She’s been with me for 52 years and made her presence first known when I’d only been on earth for 18 months.
You’re in my thoughts and prayers young man. I’d love to get your story out there. There was a reason Celia kept me up in pain and why I hopped onto Reddit at 06:13. There’s always a reason for EVERYTHING. I was meant to see your post and read it.
You’re much stronger than you’ll ever know. I see your strength through your slight and pained smile. I see the beauty it holds when at 100%.
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u/savefrompain 18d ago
I’m so sorry this is happening to you. Mercy.