My Sickle Cell Transplant: A 3-Year Update

I can't believe it's been 3 years since my transplant. For most of my life, I thought sickle cell pain would always take center stage in my life, dictating where I live, what I do, and how I do it. Most of my friends and family know that I always have a packed hospital bag because sickle cell anemia can be so unpredictable. Today, things are uniquely different.

The immediate changes

For the first 12 months, I'll be completely honest and say that I still experienced chronic pain, particularly in my joints, often triggered by drastic changes in temperatures/stress, which Seattle is known for. After speaking with other transplant survivors and eagerly wanting to get off opioids, I did a 3-day water fast so I could find out what food items exacerbate my pain since my blood is not actively sickling. I discovered that refined sugars cause inflammation in my joints, prompting chronic pain, so I quickly eliminated sugary snacks from my diet.

Managing pain

I expressed my pain concerns to my doctor, and we began transitioning off opioid medications like Dilaudid. After speaking with a pain specialist, I was prescribed methocarbamol (also known as Robaxin), which is used to treat muscle spasms/pain. It's a safer drug with no addictive side effects that can be used to treat bone pain, which I experience in my hips and shoulders due to avascular necrosis. With yoga, a better diet, deep breathing exercises, and distraction techniques, I've been able to push past the pain.

More energy

Another pleasant change has been my energy level, and I cherish it wholeheartedly. Living with sickle cell meant constant fatigue and never feeling like I could quite keep up because of my low hemoglobin level. Now, my hemoglobin is between 12 and 13, and I can run up and down a flight of stairs with little to no exhaustion. I can play soccer with my nephew, take 30-minute walks around my neighborhood, and help with chores around the house. I've even decided to enroll in a salsa class and can't wait to return to an old passion of mine: competitive dancing.

Heightened immunity

Last but certainly not least are the ongoing benefits of a healthy immune system, which means that post-transplant, my body can fight off viruses in a shorter time frame. Living with sickle cell meant staying away from infection sources because they would always trigger more than just a vaso-occlusive crisis. Following the transplant, I've noticed that my body is able to bounce back quickly, and this includes symptoms like a cough, runny nose, nausea, weakness, and so on.

Navigating the gradual mental health changes

I can't tell you just how much my life has changed without broaching a subject that's hardly discussed in the sickle cell community, which is the mental health of transplant survivors. Most of us experience an identity crisis, unsure of who we are now that sickle cell is no longer a part of our identity. Uncertainty about who you are, both as an individual and in relation to others in the sickle cell community, can lead to unresolved feelings of insecurity.

Self-image

How I saw myself in the past depended heavily on my beliefs, my value system, my long-term goals, and what I expected to get out of life. All of a sudden, my life felt chaotic, and I didn't know which parts of myself to keep in this next phase. I would constantly ask myself – am I an intelligent person, or was my passion for the sciences (especially biology and chemistry) fueled by a need to better understand my disease? – I even started to question my personality traits.

Thankfully, I had access to a therapist, and she taught me how to cope with an identity crisis and survivor's guilt in positively healthy ways.

Now I've turned my pain into purpose and I've learned how to accept myself for who I am at this stage of life. My mental health is the best it's ever been and I give myself grace, especially when I find myself falling into old habits. I am now brave enough to face them in this journey to self-discovery.