Sickle Cell Free, Part 1: An Interview with Patient #19
Posted Jun 15 2012 2:35am
Written by Sickle Cell Warrior on 14 June 2012
Hello everyone! On the Sickle Cell Warriors Facebook page we have had the pleasure of speaking with and learning from Raheem Clemmons; a sickle cell warrior who was cured from sickle cell disease. Raheem underwent stem cell transplant as an adult and has successfully recuperated. He has been so gracious answering all our questions and is open to more questions. If you would like to contact him, please check out the Facebook page and inbox him your questions. I’ve posted the questions we have been asking him in the next few interviews.
The Sickle Cell Stem Cell study is still going on at the NIH. If you are interested in learning more about it, participating, and perhaps getting chosen, please visit HERE for more information.
Because the study is still in it’s experimental phases, your insurance will not pay for it. So pretty much the only chance we have right now for the cure (unless the laws are changed) is through the study. You must have a serious form of sickle cell disease (SC, SS or Thal) with hospital admission of at least 4 times a year, sickle cell complications like AVN, acute chest or iron overload, and MUST have a sibling that is a genetic match.
This is going to be a very long interview, so I’ve broken down into parts. Part 1 deals with Before the Transplant. Part 2 deals with Life During the Transplant and Part 3 is Life After the Transplant. Now…let’s hear from Raheem his experience with getting cured from sickle cell!
Was it a tough decision for you to make?
Extremely! I was asked back when I was 19, but at that time it wasn’t a guarantee that I would have children. Then when I turned 25 I was in the hospital every 3 months for months at a time. It begin to interfere with my work. So my doctor had my two brothers come in and get tested to see if they were a match, one was and I still wouldn’t go. I had the same fears you guys have. I won’t be around people, the pain, quite possibly death.
Then in summer 2009 I wound up in the hospital for 3 weeks, came home almost went into cardiac arrest went back in, almost died from an adverse reaction to Prednisone so I spent close to two months in the hospital July to mid-August. I missed my daughter’s first birthday. That was the final straw.
I contacted NIH. You would think that was it, nope. I stayed away until I went into the hospital just before Christmas 2009 with acute chest. I had two seizures, and spent Christmas and New Years in the hospital. That’s when I decided enough was enough. I contacted NIH again February 2010, and asked them, did they remember me? They said yes, and the rest was history. I was fast tracked. I came down to Maryland in March 2010 to have the pre-screening done, my brother had the marrow withdrawn and I set the transplant date for June 17th 2010.
Besides having Sickle Cell, what is the other criteria for this procedure?
You must have had at least one stroke, issues with iron overload, necrosis of the joints, battles with acute chest, hypertension, or more than 4 admissions a year. In addition, your sickle cell cannot be treated with hydroxyurea.
I tried Hydrea for 12 years, from 1991 – 2003. Until it was no longer keeping me out of the hospital. from 14 – 26. That whole time I thought I couldn’t have children. Come to find out that was a potential side effect, temporary sterility. I asked other men with Sickle Cell who were on Hydrea if they had children and they said no. So not only does it prevent/limit the severity of crisis. It also may cause temporary sterility in men. Hydroxyurea is part of the preparation for the stem-cell transplant, because it prepares the bone marrow. I had to increase the dose every 3 days for two weeks before the transplant I was up to 4000mg/daily when it was time to go in.
How old do you have to be to have this procedure?
There are one year babies that have had it and there are 45 year olds that have had it.
How can I know if it’s safe for me? You don’t, I didn’t. I just knew I was finally tired of trying things to stay out of the hospital. The transplant was the only thing I never tried. Once I got the NIH and the team described the procedure, I was sold. Basically everything we’ve been told by doctors that are not close to this procedure is all hearsay, even our hematologist. If the transplant is successful, and there are no immune complications, you can return to work in 6 months. That’s how different this is for us.
Please keep in mind although we all have sickle cell we are all different. For example: I no longer take any meds, my Hemoglobin stays between 15.2 and 15.5. I was up and able 3 weeks post-transplant and I didn’t lose my hair from the chemo and radiation. Other patients are still on the meds. Other patients lost their hair. Some were in and out of the hospital. Some Hemoglobin doesn’t go pass 11. Also I believe when choosing this you have to be dead set on willing to accept whatever outcome there is, positive or negative.
Where was the transplant done? My stem-cell transplant was done at the National Institutes of Health (NIH) in Bethesda, Maryland. It is a government owned facility and where any new techniques and procedures are performed.
Who thought of this?
This procedure is not new. It was actually discovered by accident. The first bone marrow transplant to cure sickle cell occurred at St. Jude in 1982 when a leukemia patient underwent the procedure and was cured of both diseases. That’s when they realized it can be used to cure sickle cell, but needed more studies. They began the adult studies almost 5 years ago and have an 85% success rate.
Can anyone with siblings with the trait do it?
Yes. Siblings can have the trait, mine did. As long as your sibling is a perfect tissue match they will do it. A perfect tissue match is a 6 out of 6 HLA (The human leukocyte antigen ). This is found on all of our major organs. It is important that this match, otherwise there can be extreme complications and or death because your ne cells will not recognize your organs and began to attack them. This is why it is extremely important to have a sibling that is a perfect match, which is only 25% likely.
How long did it take from start (when you first contacted the researcher) until finish (when you were declared sickle cell disease free and out of rejection phase)?
They don’t declare you sickle free until at least two (2) years post-transplant, so two and a half including the pre-screen process.
My story is not the norm however. I fast tracked myself. My brother and I went to the NIH on March 20, 2010. We spent 10 days there and completed the pre-screening and he donated the stem cells. I set the date up when I got home for June 17th 2010. So three months from pre-screen to stem-cell donation. I was felling back to normal by August 2010. So that’s another two months. By November 2011 I was basically declared sickle free by my primary. I expect NIH to do the same on February 21, 2012. I make two years June 2012, but the fact that I been off rejection meds since November 2010 and I have not rejected the stem cells, I am basically sickle free, since then.
What was the hardest part of the transplant for you?
Leaving my family behind, you need a support system with you, I was by myself. My wife had to stay home with the children because they were still in school when I left to have it done. I also had a bacterial infection called C.Diff. It’s like food poisoning times a million, the worse stomach pain, vomiting every day, morning, noon, and night. I was on vancomycin (the strongest anti-biotic around) for 10 days. Once that was over I was fine.
Did your insurance cover it, or was the study paid for by NIH? All costs covered by the NIH (National Institutes of Health). In addition, I received $30 a day for 120 days, from the NIH for participating in the study. That was about $900/month. Which I used to pay the rent while I stayed out there. The typical cost for this procedure is $250,000+. You would have to check with your insurance provider to see if it will be covered if you were to get it done at another hospital.
How can others benefit?
The best way is to contact NIH. This way you are part of the study and it’s paid for. Also you need to have a perfect tissue type match otherwise they may not take you.
What are conditions for a donor?
The donor must be a perfect match. Healthy, no STD or virus. They can have Sickle Trait as long as they don’t have SS or SC.
Okay, due to length, we will stop here. Part Two talks 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.