Understanding the Bone Marrow Transplant Experience in Sickle Cell
In this program:
What does the bone marrow transplant journey look like in sickle cell? What are the challenges? Learn more from sickle cell advocates John Masembe and Jemela Williams.
Transcript
Interviewer:
Can you please talk about your bone marrow transplant experience, the challenges, physical and mental benefits, all of that?
John Masembe;
So for those that do not know I had a bone marrow transplant, this is where you have a donor, donor cells. Your relative or sibling is matched to see if they could potentially be able to treat you for sickle cell. They'll wipe up your natural sickle cell bone marrow and infuse your donor cells. It's a complex treatment therapy, however, one of the most important things that treatment therapy created for me was, I really wish I was prepared for the journey that I was to endure. I wasn't prepared for the mental health part of it and also the physical part of it. When you're interacting with your doctors, they will tell you you're going to have lots of labs, lots of doctors’ appointments. And, of course, they'll give you radiation and chemotherapy to kind of kill off your sickle cells. But on top of that, they will infuse you with your donor cells or for me, in my case, it was my older sister.
The hardest part of that journey for me in that experience was going through radiation and chemotherapy because it changes you. You lose your hair, you lose your...your skin tone changes. You could barely recognize yourself. And then on top of that too, is the isolation, that you cannot...because you have a weak immune system, you cannot really interact with anybody as much except for the doctors that you're with. So you spend a lot of time in the hospital going back and forth between doctors. And on top of that too, you also experience the side effects of radiation and chemotherapy. That takes a really big toll on you. So for every person that goes into this, and you go in with the expectation that it's going to cure everything overnight. But that's not the case, it takes time. The way, what really helped me was every single phase that happened, like when I started losing my hair and seeing my face changing and they put me on these steroids that made my face round, that made me realize as every hair that I lose, every skin that changes, the sickle cell is going with it. All of those scars are going, it's going, it's not coming back.
About a year into the transplant process, I slowly started to regain, my sister's cells took over, and I slowly started to come back slowly. But what I would tell patients who are out there is, be patient with yourself. You're going to interact with your doctors as much as you can on a daily basis. Sometimes you will feel like you're going to hate every single medication that they're going to give you. When I was taking my medication, there will be so many pills in the morning that my stomach would be full that I couldn't even eat anymore. That is how many pills that I was taking. So at one point I told my mom, “No, I cannot, I'm done with this.” But that was just the mental frustration part of it. But at the end of the day, I had come so far to a point that if I stopped now, then everything that I would have gone through would have been for nothing.
So being patient and understanding, okay, that this is part of the process, and also with all the physical changes that are happening, now I'm being reborn again. That is how I took on. But then the very last piece I would like to close on this too is, the bone marrow transplant really helped me understand the importance of interacting with your doctors and having a good relationship with them. But then also the need for setting expectations correctly, because doctors have, most providers, my doctors thought everything, the pain and all that stuff would be gone. But sickle cell leaves a lot of mental and physical scars. Some of them are...and they're not tangible. You can't really just look at me and say, "Oh, he has sickle cell pain right here. He doesn't have it anymore."
I still have some of those side effects. So as much as it does improve your quality of life, it does really improve your quality of life, whereby now I'm able to go back to school. I was able to go back to school, now I have a career. But all those dreams are not things that I had prior to my transplant. But I needed to understand that I'm...interacting with my doctors on a daily basis helped me understand that there is hope. It helped me understand that there's a chance for me to help other patients moving forward. And also, I still have some mental issues that I've been dealing with my whole life that I never really touched on. So be sure to be patient with yourself, be sure to see your mental health counselors. And also tell your doctors too, just because you're done with your sickle cell, when sickle cell is gone, it doesn't leave all the other mental health issues and the physical scars that you have going on within yourself. So I hope that kind of really helps somebody. But in a nutshell, I'm 10 years post-transplant, I am engaged, I have a good career, and it really created a pathway to having a quality of life that I never thought I would ever have so.
Interviewer:
Thank you, John, that was wonderful. I feel like that's a very unique take on it and that we don't often get to hear about bone marrow transplant experiences like that.
John Masembe:
Okay.
Interviewer:
And I think it's great how you mentioned the doctors need to help the patients manage their expectations that just because the sickle cell is gone, there are scars and all the silent damage, organ damage that it leaves behind. So I think that's going to be really helpful for other patients to hear. Thank you, John.
John Masembe:
Thank you.
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