Five Things I Wish I Knew Before the Transplant

I've said it about a million times, I'm happy I participated in a clinical trial and got a second chance at living my life without the limitations of sickle cell disease. However, the transplant was not a curative therapy because I am still a carrier of the sickle cell trait (AS) and the eggs retrieved from IVF still have the sickle genes.

Cherishing the little things

Personally, I cherish the little things - playing with my 3-yr old nephew for hours, kneeling at mass without joint pain, participating in low-impact yoga classes, keeping a romantic relationship, making plans with loved ones and keeping them, and I can't forget, fewer trips to the ER for a pain crisis - in short, I have time for activities that uplift my soul.

Two sides to every coin

We know that most things in life have an opposite side - every story has a hero and villain, every person has strengths and weaknesses, and every coin has a head and tail - it's practically a fact.

Transplants have been a blessing to many patients around the world but deemed a curse by some. There have been recorded cases of rejection, viral infections, death from transplant-related complications, or the onset of graft-versus-host disease (GVHD). As I reflect on my transplant journey, there are a number of things I wish I knew before embarking on a clinical trial.

The 5 Things No One Tells You Before the Transplant

1. The transplant is not a quick fix for chronic pain

There are 3 primary types of sickle cell pain - acute recurrent pain crises, chronic pain syndrome, and neuropathic pain. According to the American Society of Hematology (ASH), the acute pain crisis is the hallmark of the disease and the most common cause of hospitalization. Each acute pain episode is associated with inflammation that worsens with recurrent episodes. This results in serious complications like acute chest syndrome and multiorgan damage.¹

When I decided to participate in the clinical trial, I desperately wanted to end my ongoing battle with chronic pain and naively thought that after the transplant, I would happily toss out all prescription and over-the-counter pain medications. Sadly, that has not happened because of the severe damage to my bones, tissues, and joints. My pain medication use is significantly less and I've transitioned to alternative remedies like heating pads, yoga, massage therapy, and Epsom baths.

2. Mental health becomes a priority

Our well-being is dependent on 3 complementary factors - mental health, psychological health, and physical health. Sickle cell disease impacts all three but providers focus on the physical aspects of patient care because of the way this blood disorder manifests making it a #1 priority. 

Many transplant survivors have trouble adjusting to a new identity, overcoming survivor's guilt, and need help figuring out how to deal with anxiety, depression, and a range of emotions. This leads to an ongoing need for holistic social support to take control of your mental health.

3. You need a #SickleCellTribe

There are a lot of stigmas and medical biases around sickle cell disease. Growing up, I never talked about my invisible disability because a medical diagnosis is private and I honestly feared judgment, prejudice & stereotyping. In my late 20s, I fell into advocacy by participating in the #boldlipsforsicklecell challenge. Through social media, I've met other patients and created a support group, which I aptly call my #sicklecelltribe.

Absolutely no one understands sickle cell pain unless they've lived with the disease - not even scientists. Let's keep it real, knowledge by association - healthcare provider/caregiver/family member/friend - doesn't give you insights into how complex this disease can be. Within the community, we compare symptoms and lean on each other for support. Before the clinical trial, I scoured the internet for a transplant survivor but a lot of patients refused to speak to me. They didn't want to be reminded of their health struggles and sadly, I had to respect that.

4.Fundraise and saving: Transplants are expensive

Clinical trials were set up to cover all research-related costs and urgent testing. However, you will incur several out-of-pocket expenses that are not covered by the program. For example, IVF costs are between $10,000 to $14,000 so to protect your fertility (male or female), you need to apply for grants or fundraise.

In my case, the transplant was done out-of-state and I had aged out of room accommodations for hematology patients. This meant we had to travel, sub-lease an apartment, figure out transportation, and find a place that was close to the NIH. My mother and I were given weekly stipends but our expenses were substantial so I set up a giving circle with my extended family and close friends.

5. Continuity of care

Sickle cell is a progressive blood disease so as the patient gets older, the symptoms become complicated. There are 3 pathophysiological events that occur during the prodromal phase of an acute pain crisis: vaso-occlusion, inflammation, and nociception. In a 2012 study by ASH, aborting the acute pain episode at the prodromal phase could potentially prevent or minimize bone and tissue damage if well-managed with hydration, anti-inflammatory drugs, aggressive analgesia, and vasodilators.¹

For me, thirty-plus years of acute pain episodes, avascular necrosis, acute chest syndrome, infections, and frequent blood transfusions wreaked havoc on my body. Extensive scans showed necrosis in my shoulders and hips, severe bone loss, and iron overload in the liver so I need ongoing treatments. Like many transplant survivors, I have a pain arsenal, need bi-monthly chelation treatments, take six different medications twice a day and I'm closely monitored by my transplant team, local hematologist, and primary care physician.

Recovery has been a marathon, not a sprint.