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. [stextbox id=”custom”]Please be advised, most of our doctors information is based off of cancer patients. WE ARE NOT CANCER PATIENTS. Our procedure is totally different.[/stextbox]
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!
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]
That is wonderful that the procedure was so easy for you, my son also had a transplant and it was far from easy for him.
My son who is now 18 received a stem cell transplant when he was 17, he started the process when he was 16. It is a long process with much
testing, seeking donors and getting approval from insurance. A stem cell and bone marrow transplant are essentially the same thing, but the cells are taken from the hip for a bone marrow and the cells are taken from the blood stream for stem cell, but after that the procedure is the same.
After spending months searching for a donor for my son, we all decided to use me as his donor. I was a half match, my cells were used for the first 5 transplant and then they decided to use his brother who was also a half match but a different half match then I was cause he was his father’s son and not my son.
My son received his first transplant on Oct 26 2012 and his last one on May 24, 2013. The procedure was not working for him so he ended up receiving three full transplants and three boasts, a boast is essentially the same as a transplant but because they use less cells they call it a boast. The transplants were preceded by chemo therapy medication for a number a days, each transplant used chemo for a different number of days, the chemo kills the immune system so the body will not reject the new donor cells. The chemo worked great and completely killed my sons system, but once the donor cells were given, my son would start to make the new cells and then would just stop making them which is why they kept repeating the transplant. For the first transplant he was hospitalized for almost 5 weeks. When that transplant failed he was in the hospital for 82 days which is one week shy of 3 months, he had no immune system to fight off infection, he was not making any red cells, white cells or platelets so he had to receive red cells and platelets transfusions often.
During the last transplant they added radiation to the procedure and he was hospitalized for 3 weeks, so far the last transplant seems to be working, he is now making all the necessary cells. But during second transplant his appendix exploded while he had no immune system, he ofcourse developed a infection, and a Ileus which is when the bowls are asleep and don’t move, he developed this after the emergency appendectomy they performed, he stomach swoll up to the size of a 7 mos pregnant women and he was in so much pain he could barely move from side to side in his bed. For weeks he had a high temp, high heart rate and high blood pressure, it took him weeks maybe months to fully recover from that.
He also developed PRES during transplant which is fluid and swelling around the brain stem, it affected his vision and made him so confused he did not know where he was half the time, he was having visual hallacinations, he was a mess and at the time, I regretted the transplant, he was ruined and no longer my bright little boy. The confusion went away but he still has some vision problems because he has permanent brain damage from the fluid and pressure which is called Encephalomalacia, which means brain softening. He has a permanent black spot, a blind spot in both eyes and has to struggle to see around the spot, he says it gets bigger and smaller throughout the day, he also still has pain, which the doctors are not sure what is causing it, the doctor thinks he may have developed Fibromyalgia and also Plantar Fasciitis. During this process he also developed C diff and Noro virus and he has battled with them during the entire process, they both cause nausea and diarrhea.
He was 111 lbs before transplant and at his lowest weight he got down to 86 lbs cause he would not eat and everything he did eat came out either with diarrhea or nausea, he had to be put on Iv nutrient which he had to carry around with him in a backpack once he was released from the hospital. He was really sick during a couple stages of his transplants but he is doing much better now.
As I write this I am in tears cause he could of died many times during transplant and came close to it but he is still here by the grace of God only cause many times the doctors told us there was really nothing else they could do and they did not know why this or that was happening. I know of two children who did die during my son’s transplant, a 9 yr old girl and a 17 yr old boy but their original diagnosis was cancer not sickle cell. He is still recovering from the transplant as his immune system is not fully back yet. He feels that he was better off having sickle cell because now he only has partial vision, brain damage and still has pain. But I think maybe he does not fully remember what it was like having sickle cell, he was constantly in pain and running to the emergency room, on so much pain medication daily and now he has pain yes but we are not constantly running to the emergency room and I think even that would improve in time, the further out we get from transplant. After he was released from the hospital at one time we had to be seen daily in clinic, then three times a week, then two and now once a week, soon to be once every other week and then once a month.
He no longer has sickle cell, his hemoglobin count is now 15.0 when it used to be 8.9 when he had sickle cell and his red blood cell count is now 4.6 when it used to be 2.2, this is a miracle in itself. Also the doctor showed us the Mri of his brain during the Pres when he has the fluid buildup and what is looks like now, when he had the fluid it affected almost half of his brain and the damaged areas now are in 4 very small areas and I am grateful that the entire area was not affected. I just wanted to tell our experience in order to inform others. Thank you