When Good Morning America co-host Robin Roberts was hospitalized last month for an infection following a bone marrow transplant, the episode highlighted the vulnerability of blood cancer patients who have received the life-saving procedure.
Roberts was 52, but in transplant years, she was only 5 months old when she returned to work after her transplant last fall. This is based on the common calculation that a transplant becomes your new birthday.
Roberts had myelodysplastic syndrome, or MDS, once known as pre-leukemia because the bone marrow disease can turn into leukemia if not treated.
Like many survivors of a blood cancer – in my case AML, or acute myeloid leukemia– I have followed her progress closely. I wondered how she talked her doctors into allowing her to return to work just five months after the procedure.
I was shocked when my doctor told me that I could return to work only after a full year.
Chemotherapy basically eradicates your bone marrow and it is then filled with healthy cells. At that point, you have the immune system of a baby. You even have to get your vaccinations all over again.
Roberts was off the air for a week last month following hospitalization for an infection. It’s not only returning to work that can put your immature immune system at risk. It’s just about everything.
I still have the big white binder filled with all the “don’ts.” At first, no going anywhere without a mask and gloves. No restaurant food or unpackaged deli meats, no food cooked outside your house, no bakery products, no fresh fruit or vegetables, and more.
I craved a strawberry, a bagel, and pizza (frozen is allowed, but it’s not the same). These restrictions are gradually lifted, starting 100 days post-transplant.
“It will really set us back if you get sick,” my doctor told me. Roberts was lucky to have had just a week-long hospitalization. Not liking to do anything the easy way, I did, of course, get an infection, probably from something as seemingly innocent as pulling a weed out of the garden. I contracted apergillus, a dangerous fungal infection, probably from releasing a fungus from the dirt. Before I could get my last round of chemotherapy and my transplant, I needed lung surgery – a Video Assisted Thoracic Surgery, or VATS – to remove the fungal ball. I felt like a Mack truck had hit me.
Roberts has been lucky in other ways. If her sister had not been a match, her doctors would have sought a donor from Be the Match, formerly the National Bone Marrow Registry Program. Because they have a more complex tissue type and are not well represented on the registry, African-Americans are least likely to find a match. Only 7 percent of the approximately 10 million potential donors are African-American.
Be the Match has increasingly sought to attract more African-American donors, either through registration drives or through providing information on getting a home-testing kit. Potential donors use a tongue swab to determine their human leukocyte antigen (HLA), the genetic marker in white blood cells.
More information is available from the Be the Match website.
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