Warrior Story of Hope- Will S.
Defining Strength & Hope!
My name is Will and I was born with sickle cell anemia – SS. I am 21 years old. I had a bone marrow transplant recently. I am currently going through the process of healing. The experience of going through the bone marrow transplant is not easy, but I believe it is the best decision I made. I look forward to being sickle cell free!
My greatest challenge living with sickle cell disease was learning my body. As a sickle cell warrior it’s good to know what can trigger a crisis and what helps stray away from them. I couldn’t eat greasy foods after 8-10pm, be in cold water at the dells or any pool/cold waters. Your body will always tell you when things are a not good. My body tell s me the majority of the time when it’s being mistreated.
In my junior year in high school I had a blood infection in my face from having my hair in my face so much. That infection settled and rested in my knee and before I noticed the problem I was too late. Before school I woke up seeing my brother in my face and me pleading for air, my body fighting and just in shocked not knowing what’s going on. As I stood up my leg wasn’t bendable and my breathing was only possible, if I drank water (sounds weird but true). I think my body was very dehydrated. I assume the water was helping that WHILE clearing airway to my lungs while the blood infection made it hard to breathe. During this time my brother and mom argued whether I go home to her and rest since I was living her, or immediately go to the hospital. My mom won the argument. While I was still struggling to breathe and walk being driven home, once I got there my net temperature was SKYROCKETING. I don’t remember exactly, but it was high! So my mom took me to the hospital. When I got there I blacked out! I came to my senses maybe a day or two later being told when I got there I was completely crazy. Trying to pull the IV out my arm, fighting back, keeping them from restraining me just giving a very hard time. I had a surgery and apparently I flatlined during that as well. When I woke up I had a long tube in my knee slowly draining the fluid out. I was completely confused and in a nervous laughing mood receiving the news about it. I didn’t now how to react or take it. As my doctor told me he dislike how I smile about the news he’s telling me, but I could not manage to help it. Mentally I was worried and I was aware how serious my condition was, but physically my face couldn’t show it. That’s how I cope with everything bad, I smile. So after that talk with My doctor I also needed My first PICC line as well.
During October-February most of the time I was hospitalized, but I left the hospital and went home in February. My mom had to inject antibiotics herself needle and everything! I was proud of her for cooperating and doing it to care for me. I had to have is done everyday or every other day. I started going to school, after a week of being home with the PICC line and eventually I completely healed and no longer needed the PICC. That moment was probably my HARDEST sickle cell moment.
Mentality my sister was ALWAYS there for me when needed. She was my main support system and the one to nurture me as I needed. If I ever felt weak, she was trying to be strong for me. Moments I felt like giving up she held me, she blessed my life with nieces. I’d give everything for my nieces. I’m thankful for my nieces because they make me most happiest. There was times my sister could not be available because she went off to college. When she left, I was happy because she was making a decision to bettering herself and she seemed happy. My heart was hurting when she was away because she could not encourage me and care for me when I was ill. She visited me every chance she got during her college breaks. She holds such a high pedestal in my life. I can’t physically cling onto her because she’s her own person and she is been very independent, so I try to be as strong as her. I want to make her happy and proud.
During this (Bone Marrow Transplant) I going through many changes. I am making a YouTube diary sharing my experience so others can know what to expect. I share some of the experiences I wish I knew in advance. I am looking forward to healthier days. I am fighting through the process.
I have accomplished many goals while living with sickle cell. Throughout my entire school career I’ve been consistent with my attendance! One thing about me is that I never let sickle cell stop me from doing anything I put my mind to. I also did community service working on renovated homes that need electrical, internal or external fixing like wiring, fixed windows, and painting. During my senior year in High school I was apart of a program called, “Local 420”. The program prepped me to be an engineer teaching me about piping, fixing furnaces, anything handy when it comes to home engineering. I have many documents and certifications.
The advice I would like to give to other warrior patients that maybe younger or a peer warrior fighting a chronic illness is consider your options of treatment. If you can do a one marrow transplant do it. I had to consider that my health is my priority. For those that aren’t able to do the procedure, you got this! Always take care of yourself, don’t ever think you’re too cool or too old to do anything that’s the smarter and safer choice. I am aware that the teen life or finally hitting twenty-one give so many opportunities, but trust me in the long run or when the pain hit it’s not worth it. AT ALL! If anything you have no room for these moments because the older you are, there is a possibility for worse complications. Why risk that trying to be cool? If you just focus on yourself and take precautions of your health, there are moments you will be fine. Just stay safe, stay motivated, keep pushing, strive to be the best version of yourself, ALWAYS be happy.