Sickle Cell Free, Part 4: Life After Stem Cell Transplant
Posted Feb 17 2012 3:20am
Written by Sickle Cell Warrior on 17 February 2012
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.
Do you still suffer from any sickle cell related complications? NO! In fact when I went to the NIH after 90 days. The doctor told me, “Now you have to worry about normal things like Acne, Weight gain, and cholesterol.”
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?
You know what I been hearing a lot of: DOCTORS PROVIDING INFORMATION THAT IS OUTDATED AND/OR FLAT OUT WRONG, when it comes to stem-cell transplants and people with sickle cell.
Please be advised, most of our doctors information is based off of cancer patients. WE ARE NOT CANCER PATIENTS. Our procedure is totally different.
1. We get 4 days of Chemotherapy and the medication is not considered chemo. It’s a “whole antibody” that targets the immune system. Compare that to weeks, even months of Chemo a cancer patient goes through.
2. We get one day of total body radiation. Compared to days, weeks or months of targeted radiation for a cancer patient.
3. Our recovery takes 21-28 days in the hospital and a return to normalcy within 6months to a year. Cancer patients take time because of all the Chemo and radiation treatments.
4. Because we receive a less aggressive preparation, our recovery is faster, our risk is smaller and the results are greater.
5. I was in the hospital with the cancer patients. Even the nurses said the sickle cell process is much easier than theirs. They had it much harder than we did. We spent our time walking around, playing pool or bingo (which I lost all ten games, I think it was fixed).
6. Most importantly: because some of our marrow is still there ~ the donor and host cells are introduced from the start. If the host cells have a problem with the donor cells they destroy them with in 3 weeks. If not your pretty much in the clear. On the other hand, Cancer patients entire bone marrow is wiped so the Graft vs. Host risk is greater. So far no one from the sickle cell study experienced GRAFT VS. HOST DISEASE. Not one person. No one.
So if you have any questions I did not answer please contact me, because most likely your doctor is wrong, unless he’d done it or is part of NIH Sickle Cell stem-cell transplant team. If not, 99.9999% of the time he is comparing it to a bone marrow transplant to cure a type of cancer. AND THAT’S JUST WRONG.
Thank you so much Raheem for answering all our questions. Be happy and live well!