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15 year old male who will have a bone marrow transplant
11/8/14: Living with sickle cell anemia is hard because I can’t do things that most people can do
freely. I have to watch it when I am active because one side effect of this disease is blood clots.
Therefore, the more my blood circulates, the more chance I have of getting a clot. Also I get really dizzy
easily, and due to the blood clots, I am in pain. A couple of times my blood clots have been so bad that I
have started to loose feeling in my leg. I was rushed to the hospital and treated as fast as they could treat
my crisis. My skin yellows and my breath often smells a weird fruity smell. I’ve had 2 strokes which also
put me in the hospital, and I get sick very easily and am more prone to bacterial and viral infections. I
remember last year I caught the flu 6 times, and even had a severe case of mono. I am always going to
the doctor or emergency room and I take so many medicines. I’m always at risk of being in pain and I
have to be extra careful. The doctors told my mom that they could try to help me out with my disease by
me undergoing a bone transplant. I’m scared because only about 500 kids out of millions who have sickle
cell anemia have had a bone marrow transplant and the stakes are very high. There are many risks and
sickle cell kids are more prone to blood clots, or loss in major surgeries by 17% than others. I wonder if
my parents are going to go through with it. I just want to be normal.
11/9/14: My mom and I went to my hematologist to talk about the outcomes and affects my fragile
blood has with this crucial transplant and if it was better to proceed or not do it. A hematologist is
someone who talks about the studies, diagnosis, treatment, and future outlook of blood disorders. He said
that yes, it was very risky, but all sickle cell kids are at risk when put under this procedure. He said it was
our decision. Next we went to a phlebotomist who took a blood sample from me and tested it. As we know
I am anemic because my hematocrit levels were too low. But my phlebotomist just wanted to see if my
blood had any new changes because they test and draw venous blood. She said that my blood still
looked the same and the transplant was still our decision. After long hours of thinking, my mom finally told
me that she had called my surgeon, and I was going to have a bone marrow transplant next Thursday.
11/10/14: After coming out of the transplant, I was drowsy and in pain, but I knew it would take some
time to heal. A doctor came in and sat down on the foot of my hospital bed to tell me what they had done
and the benefits from having this done. He said that they went into my spine and transplanted marrow
from a match donor into my spine. The marrow had to have the same genetic differences that I had. Then
they transplanted the matching stem cells to mine. He said that there was many risks because sickle cell
patients have a higher risk of complicating stroke, seizures early in transplant, and they are always at
high risk for bleedings, infection. He then said that the benefits from this procedure entailed that my sickle
cell anemia was cured. He said I will slowly start to see differences in the simple fact that I will be able to
be active without being in pain, I won’t be in pain as much due to little blood clots, I’m not as susceptible
to bacterial and viral infections, and my skin color should return to normal along with lack of feeling dizzy
or fainting.
11/11/14: I was excited, I was going to be able to play baseball and do BMX with all my friends. I
could finally keep up and not always worry about pain or doctor and ER visits. Yes, I still had blood clots,
but once every 6 months it felt like. My skin was normal and I was finally normal. I didn’t have to take
many medicines anymore, and I could finally be a happy teenager.