Interview with Teonna Woolford
How did you first learn about this BMT study that could potentially cure your SCD?
In 2010, I was 18 and had overcome so many obstacles and faced so many complications related to sickle cell. My hematologist told me he thought it was time or me to consider a bone marrow transplant. Ideally, he wanted me to have a perfect matched donor for the transplant. I went on the national registry and when I didn’t have a match, my mother started hearing about a clinical trial at Hopkins where they were using half matched donors.
What was it like to find out you were eligible for a BMT?
I wasn’t eligible for the standard BMT. What’s so promising and attractive about a haplo Transplant is that most patients have a parent or sibling who they can go to for the marrow donation. Knowing that this was experimental, I was pretty scared but hopeful and excited about the chance at a better quality of life.
What type of BMT were you eligible for? Who was your match?
My mother was my half matched donor.
How did you make the decision to determine you were going to participate in this study?
It was a difficult decision. At the time, I felt that sickle cell was hindering me from living the life I wanted to live. I made the decision out of desperation. I was nervous about the side effects of the chemotherapy, mainly the risk of infertility, but I wasn’t really afraid of rejecting the transplant because truly believed it was my time for a cure. I had a lot of conversations with my family and my hematologist. Collectively, we decided to go for it.
What happened in the months following the procedure?
I was in the hospital for 30 days after the transplant. For the next three months I had to stay within five miles of the hospital due to the high risk of infection. I had to go in for blood work three times a week. I couldn't really go anywhere besides the doctor's office and my little apartment. It was really important that I had a caretaker with me at all times.
When did you realize the BMT had failed? What symptoms did you have?
About three months after the transplant, I started having really high fevers and chills. When my fever broke weeks later, my doctor informed me that I had a virus called CMV and my bone marrow had completely shut down. For three months I wasn't producing any red blood cells. I was getting blood and platelet transfusion around the clock but my body was rejecting it. It was scared about what might happen to me.
After weighing out options, I was told that I needed to try the whole process again and have my mom donate more bone marrow. In my mind, that was the cause of all the chaos, so I refused to go through it a second time. Thankfully three months later, my bone marrow slowly began to recover on its own.
What’s life like today after surgery in regards to your health?
Today, I still deal with some issues from the transplant. I have been told I'm infertile and at random times my platelets counts drop low. That can be scary because I’m at risk for hemorrhaging. This happens as a result of my bone marrow being damaged from chemotherapy. Since then, I’ve been encouraged to try the transplant again but, mentally I just can't get there.
Today, I am a 28 year old psychology major living and thriving with sickle cell disease. I'm thankful that my sickle cell is more manageable today. I am very mindful about staying hydrated, managing my stress and avoiding other triggers. I'm able to travel for sickle cell advocacy work and I am now back in school.
I also invest a lot of time raising awareness or sickle cell disease and advocating for our community. I credit my faith in God and supportive family and friends for keeping me pushing through life.
Do you regret going through the process?
I don't regret going through the process at all. I realize that in order to get the advancements we need, clinical trials are necessary. Although my experience didn't go as planned, I still encourage others to participate in clinical trials. I often joke about how I single handedly advanced the face of medicine because that is what clinical trial participation does– promotes research and advances medicine. Researchers have learned from my journey, so that they can make treatment better for other people in the future.
I also know that had I not gone through the process, I would spend the rest of my life wondering, “What if I missed out on a chance at a cure?”
What advice do you have for other sickle cell patients wanting to get a BMT or enroll in a clinical study that could treat or cure their SCD?
My biggest piece of advice is to do what’s right for you. I tell everyone to make an informed decision. Ask questions, weigh the risk and the benefits. It's important to have numerous discussions with your family because this process can't happen without a support system. I also encourage people to keep a journal of some kind, write down all thoughts and feelings. It's such an emotional decision and there is a lot to consider. I also think it is helpful to talk to someone who has already been through the process.