Today I met with Dr. Brodsky and he updated me on my progress. I haven't seen him since my chemotherapy as he has been away for a couple of weeks. He advised that I am progressing well and all of my ailments are to be expected from my medication, Prograf. The medicine is self-explanatory. I will take it for at least 6 months to a year in order to facilitate grafting my brother's marrow 100% but while I'm at 100% it will prevent me from obtaining graft v. host disease. Still Prograf's the reason for my low magnesium levels and various other side effects.
I had a test earlier this week to test my hemoglobin levels. I believed the test would evaluate how much of my brother's marrow is grafting and how much of my own Sickle Cells are diminishing. Apparently, I'm at 50%. Dr. Brodsky believed that to be irrelevant today because, well... I have to explain something first:
People who carry Sickle Cell Trait have an S and an A chromosone or SA. (Approximately 2.5 million people in America carry Sickle Cell Trait.) If two people that have trait get together to procreate, their childs odds of getting SS or Sickle Cell Anemia are at 25%. My mother was not aware that she was a Sickle Cell Trait carrier until I was diagnosed at 6 months with the disease but my father did know he was. Please get tested if you don't know if you are or are not a trait carrier. (Approximately 80,00 people in the U.S. have Sickle Cell Anemia and about 1,000 babies are born each year with the disease.) Example:
Mother: SA (Sickle Cell Trait Carrier)
Father: SA (Sickle Cell Trait Carrier)
Child #1: S from Mother and S from Father = SS (Sickle Cell Anemia)
Child #2: S from Mother and A from Father = SA (Sickle Cell Trait)
Child #3: A from Mother and S from Father = SA (Sickle Cell Trait)
Child #4: A from Mother and A from Father = AA (Normal Adult Hemoglobin)
My brother is SA (he has the trait) and I am SS, so for me to be showing at 50% it could be my own hemoglobin and reflect me not grafting my brother's marrow or it could be that I am grafting my brother's marrow. They will perform another test next week to see if the 50% cells are male or female. AH HA! Science is brilliant. I think I explained that so you could understand it. Genetics are difficult to explain but somehow my 7th grade teacher made it seem so easy.
Dr. Brodsky and I were also able to discuss other people joining the trial at Hopkins this year. Currently there are four of us. The gentleman that started two weeks before me is 100% grafted. Great news! His donor was only a 50% match but still it's not an exact science, so that's not a guarantee I will be at 100% in 2 weeks. I, and the team, are optimistic. I will be able to report my progress at 3O days in about two weeks.
But I digressed...there are 3 or 4 more people to join the study before the end of the year. It's sad because there should be more of us -- didn't you just read there are over 80,000 people afflicted with Sickle Cell Anemia in the U.S. alone? Guess what the main problem is? Health insurance! Dr. Brodsky said he is receiving many recommendations from doctors for patients who NEED to be in this program. People who are quite ill from this disease but you know why Hopkins can't accept them? No insurance or they're on State Medicaid which is not good in the state of Maryland. How sad is that? The #1 hospital in the U.S. with a cure for Sickle Cell Anemia that can't accept patients who are practically dying from the disease over health insurance. It speaks volumes to the repairs that need to be fixed in our health care system and I hope a lot more people become proactive in voicing the need for an overhaul of our medical insurance in the U.S. Please support Obama's fight for universal health care for ALL Americans.
Additionally, please spread the word. If you know of someone, or have a family member or a friend of a friend with the disease who is interested in entering the trial, please provide them with my personal information and I will be there to provide them with information to the program. They should have medical insurance and be able to live within 30-45 minutes of Johns Hopkins in Baltimore for 3-6 months with a care provider.
Thank you for reading.
Peace and blessings,
Christina Madry
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