Written by Sickle Cell Warrior on 15 February 2012
In Part One , we met Raheem, 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. This section goes into the nitty gritty details of his experiences with the transplant and recovery phase. In Part Four , we will talk about Life After the transplant.
How many pills did you take every day?
8 – 15 (2 Antiviral; 2 Penicillin, 1 Anti-bacterial and 3 immunosuppressant meds). The immunosuppressant meds are constantly adjusted, so you may take 2 or you may need 8. I did know someone else in the study that had to take 15 pills a day.
Did you have to have a port or PICC line?
I don’t have a port so they inserted a PICC line. They place it eight days before the stem-cell transplant, and it only stays in until one week after the procedure.
What was the scariest part for you? No part was scary once I was admitted to the NIH. The fear was gone and replaced with hope. All the people who went in scared experienced more side effects. I think we have a tendency to not believe in ourselves enough and that’s where the issues creep in. Mentally we allow it to affect us. I went in knowing it was going to work. I gave another patient the same advice and he too went through it with ease. I believe a positive attitude is what got me through this and why I was so different in my recovery. I went in expecting it to work. Knowing it will. Yes I prepared for the worse (by worse I mean any and everything bad), but I honestly believed down to my core that it would work and it did.
What was the easiest part?
The recovery was the easiest. Once the stem-cells are in you just sit back relax and let the new cells do their job.
What was the most uncomfortable part?
The, bone marrow collection, chemo-therapy and receiving the stem-cells were all uncomfortable. In order to establish a base number for your bone marrow percentage versus donor they need to withdraw bone marrow from you. I have extremely hard bones for someone with sickle cell, so the pain was excruciating. The kicker? They still didn’t get any marrow. And they never will.
Chemotherapy is done over 5 days. The medication is given via the port or PICC line. The first day you get extreme chills and you fill like you’re freezing. Because your bone marrow essentially under attack. They give 25mg of Demerol to calm it down. Day two they increase the dosage and it’s more of the same, chills, freezing and Demerol. Day three increase dosage, same symptoms but to a lesser degree. Day four and five, no increase and no side-effects, the body has essentially adapted.
When I received the stem-cells I felt pain in my legs and hip, it was extremely uncomfortable. It felt like a crisis joint pain.
The hardest part is going through the procedure due to the complications that may occur while the immune system is recuperating. It’s funny because out of all the patients before me no one said anything. I couldn’t talk to anyone and the person I spoke to said it was painful. Then I went through it and it wasn’t painful.
I was in pain one day out of 20. And that was when the stem cells were going into my bones.
The only time you may feel pain is when they began to wean you off the pain meds and that’s only because the brain sends pain signals as it is withdrawing from the opiates.
Afterwards, you will never be in pain again. Unless there was previous bone damage from necrosis.
What are the side effects of the stem cell transplant?
I haven’t experienced any, but:
is always a worry after receiving any stem-cell transplant, but none of the patients in the study experienced it.
After the radiation your mouth becomes extremely dry, and lose your taste buds for about a week, then they gradually return. They all return in 4 weeks.
The women seem to have a harder time than the men. This is noticed in all transplant procedures. They don’t know why, but still the women have had success and are now living there lives. The texture of your hair changes. My hair went from curly to straight. It was weird. It took one year to get my waves back. If you have tighter curls it goes from that to wavy. Why? I have no idea. Out of 25 patients, 21 no longer have it and the other 4, the sickle cell returned but was milder. Some people experienced withdrawal symptoms because as they wean you off the pain med, the brain can release chemicals that cause crisis like pain, this is normal.
I weaned off my pain meds during the 21 days I was in there. They thought it was too fast, but I figured the faster I’m off of them, the faster I would heal. I was right, but I recommend going at your own pace.
How long did recovery take?
21 – 28 days in the hospital, if there are no complications. One week after you receive the chemotherapy and radiation, your neutrophils (cells that protect against basic infections) begin to drop. This is when you will have to wear a mask and gloves. It takes 10 – 14 days for them to get back to levels where you can be able to remove the mask. My neutrophils were normal by day 19. I stayed 21 days because my blood levels spiked. Come to find out a certain chemical in our blood spikes when we work out. I was working out a week after the transplant. On average it’s 3 months to reach new hemoglobin levels. 6 months for basic immune cells to return to optimum levels. Also, at 6 months out you get re-immunized. So you have to get your immunization shots all over again. One year for T-cells to return to optimum levels. Two year for B-cells to return to optimum levels.
What was the recovery period like?
For me the recovery was a breeze. I didn’t experience any side-effects. Although I had a reaction (full body rash) to the anti-coagulant preservative DMSO, added to in the stem-cells. There were two other transplant recipients there with me. We were all release by day 28.
Did you have any hiccups during recovery?
LOL, no. However, you do lose your sense of taste after the radiation and you get extreme dry mouth. The bitter and salt taste buds return first, around 2 weeks after. Complete taste returns around 6 weeks later. I didn’t enjoy food until 5 weeks post-transplant. I was just shoving food down my throat.