When I had my bone marrow transplant, I was the very first person to receive a transplant under that particular study (the Stride-HCT bone marrow transplant study). The Stride-HCT transplant stands for sickle cell transplantation to prevent disease exacerbation in young adults. At that time in 2012, I didn’t know and hadn’t been introduced to anyone who had ever been cured of sickle cell disease.
Although your doctors may try to connect you with other patients who have gone through a bone marrow transplant, probably no one in the group will have had your disease or have gone through your same struggles. When I was going through my transplant, my doctors wanted to connect me with other patients who had battled various types of cancer.
They also wanted to connect my parents to caregivers of transplant patients. I declined their offer because, in my head, they didn’t understand what I had gone through to get to this point in my life where I needed a transplant. They would not understand my exact fears of dealing with sickle cell disease and the fear of my body rejecting my transplant.
Being the first to go through something as life-changing as this and not having anyone to talk to who’s been through exactly what you have gone through is scary. See, when you have someone who has walked a mile in your shoes, you have more in common with them, and there are certain things that you two can connect with that others cannot.
The only people I talked to were my therapists and doctors. The therapists did their best to coach me through the mindset of end-of-life thoughts to new life and new beginnings. The only reason why I received my transplant in the first place was because I was dying and I was told wouldn’t live to see the next 3 to 5 years max.
One of the best pieces of advice that I could give to someone who is considering a transplant is to make the best decision for yourself. I believe I would not be alive today had I not had a bone marrow transplant. It was my family who helped me decide to receive transplantation. The way that I was able to get through the transplant was to go into it mentally telling myself and believing that it would work.
How you walk into a situation and how you talk to yourself dictates your actions and outlook. I also believe it sways your outcome. I didn’t want to go to therapy or talk to people who didn’t have my exact disease. I also didn’t want to talk to people who had gone through what I went through at all. For me, I didn’t want to know, feel, or experience anything that anybody else was going through. I wanted to focus on myself, my health, my particular situation, and my mindset. I didn’t want to know anything that anybody else encountered on their transplant journey because I did not want to take in their issues and fears.
If you are considering transplantation for sickle cell disease or if you know someone who has this disease, I think it’s worth looking into this procedure. Yes, there are potential side effects and there are risks. The transplant could cure you without any issues, you could be cured but still experience a degree of graft-versus-host disease, or your body could reject the transplant. But I feel it is at least a procedure to consider.
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