Sickle Cell Free, Part 4: Life After Stem Cell Transplant
In Part One, we met Raheem C., a 33 year old gentleman that recently completed the stem cell transplant in NIH with a generous gift of life from his brother. On the Sickle Cell Warriors Facebook page, we grilled him to find out everything we could and Raheem was gracious enough to respond. Part Two talked about the Stem Cell collection and donation process. Part Three goes into the nitty gritty details of his experiences with the transplant phase. In Part Four, we will talk about Life After the transplant.
If you want more info about the research study, contact the NIH at http://patientrecruitment.nhlbi.nih.gov/sicklecell.aspx#42
How else does this change your health besides being cured?
Everything changes. Previous bone damage is healing. I don’t get tired. Stamina is crazy. Lung capacity is above average when compared to normal levels. I’m healthier than all of my friends except one. He’s my P90X coach. You gain weight. How much? I started this procedure at 6 feet 145 pounds. In six months I was 165lbs. Three months later 185lbs. Today I’m 197lbs. I actually changed my diet because at one point I was 208lbs.
Does it feel weird to not have to take med’s or not to feel pain when you do certain things?
Not weird, just different. Because I spent my whole life worrying about when I will have my next crisis and how I was going to work or go to school. Now that that’s gone I have to find new things to focus on. It’s some kind of freedom. I based my entire life on sickle cell and now that it’s gone, I honestly don’t know what to do with myself. I find myself just trying things to see if I could do it. It’s weird, but fun.
Are you able to have children even after the whole process?
Apparently we can. The person that had a child following the transplant was a woman who had sickle cell. This is an important finding because only the male reproductive organs can be shielded from the radiation. Therefore, for a female, who was exposed to both the radiation and chemotherapy, to have a healthy child following the procedure is quite amazing. However, I recommend having them first. Just in case.
Do any of your kids have sickle cell?
No. I made sure my wife didn’t have it (SS) or the trait. Because I knew I was going to pass the sickle gene, I needed to make sure my mate didn’t have it at all. All my children have the trait.
Does it affect having children?
Apparently not, in fact, the first person to have a child after having the transplant was a female.
This was because my metabolism slowed down in relation to my body no longer having to work as hard to process the dying cells.
Is there anything else you would like to share with us Raheem?
Thank you so much Raheem for answering all our questions. Be happy and live well!
You can contact Raheem on Facebook HERE.
If you want more info about the research study, contact the NIH at http://patientrecruitment.nhlbi.nih.gov/sicklecell.aspx#42 [scroll to the very bottom of the page]