My stem cell transplant was a decade-long journey filled with unnerving health battles and bittersweet memories but I know with complete certainty that every hurdle I’ve faced, prepared me for that life-changing moment. As I embark on the road to recovery, I’ve pieced together unexpected but fascinating events that completely changed the trajectory of my life. Many of the tragic moments shared have empowered me, fueled my sense of purpose and continue to redefine my identity as a #SickleCellProdigy.
A Domino Effect
Four years before the transplant, I was diagnosed with MAC (Mycobacterium Avium Complex), a life-threatening bacterial infection that almost brought my life to a screeching halt. The infection started in my lungs, circulating through various organs before entering the bloodstream. It triggered a series of symptoms – acute chest syndrome, severe fatigue and iron overload caused by transfusion therapy – that seemed to exacerbate my sickle cell diagnosis. As my health rapidly declined, I became a high-risk case in need of constant inpatient care.
In 2010, I scoured the internet for curative therapies for SCD but didn’t meet the eligibility criteria at the time. The irony of the story is that the debilitating symptoms brought on by the MAC infection suddenly made me an eligible candidate for a clinical trial. I had to think fast so I turned adversity into opportunity and contacted the National Heart, Lung and Blood Institute (NHLBI) at the NIH. I was introduced to Dr. Matthew Hsieh, the research doctor who changed my life.
I’ve often heard the phrase “luck is what happens when preparation and opportunity meet” but when I got the call that my brother was a 94% familial match, it wasn’t sheer luck, it was nothing short of a miracle. As my only sibling, he watched me tussle with death one too many times. He willingly offered me this priceless gift, his stem cells and a second chance at life.
Transplant survivors have one thing in common – a strong will to live. I knew embarking on this journey would be tasking on my mind and body but what I wasn’t prepared to face were the arduous pre-transplant procedures: Invitro fertilization (IVF) and the bone marrow aspiration.
Chemotherapy drugs cause long-term infertility, so IVF was my only shot at having a family in the future. It is not a transplant prerequisite but giving up the ability to have children wasn’t up for discussion or debate. I made an informed decision to go through the daunting IVF process, seemingly neglecting its impact on my health, because I refused to let sickle cell rob me of a lifelong dream of someday becoming a mother. The daily hormone shots caused an upsurge of emotional chaos so to combat feelings of fear and anxiety, I took an online writing class that gave me a cathartic creative outlet to express my pain.
Bone marrow aspiration is a traumatizing experience; the procedure involves inserting a needle into the hip bone to withdraw a sample of bone marrow fluid. It was done with local anesthetic, so I lay awake for thirty minutes, pushing through excruciating pain till my whole body went numb. I had to practice mindfulness and self-compassion so the heaviness of the process wouldn’t consume me.
Nothing prepares you for the side effects of chemotherapy and radiation. The regimen destroys many of the diseased cells and weakens the immune system to keep the body from rejecting the donor cells. It took a significant toll on my body – starting with headaches, vomiting, fatigue, mouth sores and loss of appetite.
To survive the transplant, I needed strength, so I found a culinary service – Afrolems – that curated chemo-friendly recipes tailored to my calorie and protein intake needs. I couldn’t bear to watch myself wilt away so I decided to shave my head before the gradual hair loss. This small act was my attempt to take back control because I was a fraction of the woman I once knew.
Weeks later, it was finally transplant day and the infusion of the donor cells was seamless. Apart from a garlic aftertaste caused by the chemical agents used to store frozen stem cells, it was an ordinary day for the transplant team. For me, it was an extraordinary experience and a scientific miracle.
When transplantation was complete, I stayed on the hospital floor, waiting for the new stem cells to engraft. Days later, the nurses noticed signs of infection – a fever, shortness of breath, seizures and increased bone pain. With a compromised immune system, the team started a series of antibiotics and luckily, I recovered well.
On my daily walks around the unit, I saw patients who were at different stages of their transplant protocol. Their facial expression and overall countenance was my cue to engage in light hallway banter. Word got round that a patient on the floor didn’t make it and for some reason, the loss imprinted on my heart and caused a dynamic shift in my perspective. I felt a sense of urgency to speak out for those that lost their battle to sickle cell.
People with invisible disabilities know battling a chronic illness is not and will never be easy. Medical experts know the science, but we know the pain. As a marginalized group, we’ve been tainted by the devastating impact of the Opioid Crisis – with harmful labels placed on SCD patients as drug seekers.
Sickle cell disease manifests in various ways and the patient experience differs from person to person. It is important to share our stories and humanize our experience so younger patients are not judged or treated with prejudice. As a #SickleCellProdigy, I know my identity and will always be a patient advocate because I’ve been there and some days, it feels like I’m still there.
QUICK SMOOTHIE RECIPE FOR CHEMOTHERAPY PATIENTS
Created by Afrolems
In my experience, smoothies can be one way to get the nutrients your body needs to handle the effects of chemotherapy treatment. In my opinion, they are a good option to consider if your treatment gives you side effects and best served cold to soothe mouth sores.
TROPICAL POWER SMOOTHIE
YIELD: 3 CUPS
PREP TIME : 8 MINS
1 Medium Sized Orange
2 Halves of Green Pear
A Slice of Lemon Zest
4 Peach Slices
1 Bottle of Ensure Clear (Vanilla) or Ensure Clear Mixed Berry
1/2 Cup of Ice Chips
STEP 1: In a blender, pour in your ice chips, pear, lemon zest, blue berries and peach slices.
STEP 2: Squeeze the juice from your orange and add to mix.
STEP 3: Finally pour in your Ensure Clear and blend.
STEP 4: Serve your smoothie cold.
● If you do not have access to peaches, you may substitute with mangoes.
● You may also consider soy milk as a substitute if you are lactose intolerant.