There are several thousand South Asians waiting for a bone marrow match that could save their lives. We could, collectively, change their odds of survival by registering on the National Marrow Donor Program registry, says VEENA RAO, who was recently a donor herself.
(This feature was originally published in May 2012.)
Recently, friends and family of an Athens sixth grader, Kajal Patel, who is in urgent need of a bone marrow transplant, got together and organized a 24-hour bone marrow drive at various Athens locations. Remarkably, over 3000 people turned up to provide cheek swabs and register on the National Marrow Registry within the 24-hour period- reportedly, a world record!
The most heartwarming part of the story is that multiple matches were found for Kajal from this pool of potential donors. Kajal’s parents are now confident that their little girl will be well soon.
The Athens Academy sixth grader has been in the hospital since February after suffering a series of strokes. The young girl was born with an immune deficiency and needs the transplant to stay alive, reports 11Alive.com.
This story is significant. South Asians are severely underrepresented in the National Marrow Donor Program (NMDP) registry. The odds of finding a match is one in several thousand for any patient; but the odds are almost impossibly higher for South Asians in need of a bone marrow transplant. Matches are likely to be found within one’s own race. That Kajal found multiple matches from the 3000-strong potential donor pool is nothing short of a miracle.
But miracles sometimes happen. It happened to me too. Several years ago, I had the opportunity to interview and write about a feisty Illinois woman, Padmaja Brahme, who suffered from Hodgkin’s Lymphoma and was in dire need of a transplant. The local Indian community rallied to help find a match, organizing donor drives at local events. Tragically, Padmaja never found a match, and despite a brave fight, did not make it. The last time I spoke to her, she seemed to sense that her days were numbered, saying tearfully, “things seem difficult now.”
This was my first experience interviewing somebody so sick; somebody whose life depended so totally upon the goodness of somebody else’s heart. It prompted me to register on the NMDP Registry at the Festival of India that year.
Since then, I’ve lost a cousin to leukemia and my dear father to Non-Hodgkin’s lymphoma. I’ve heard countless stories of tragic lost battles. But among countless such stories, every once in a while, comes along a story that warms your heart and make you want to cry and smile at the same time. I was blessed to be part of one such story last summer, when I got an unexpected call from the NMDP, seven years after registering. I was the best match for a 57-year-old woman who suffered from leukemia. A transplant was her only hope of survival.
I don’t know why I was blessed with the opportunity to save a life. I know of friends who have been on the registry for as many as 30 years, and have never received a call. All I can say is that it made me feel truly special.
The NMDP coordinator was gentle, patient and sweet as she walked me through the entire process, and was with me through the entire experience. I got a complete physical to make sure I was healthy enough for the procedure. I had my blood work done thrice. Some blood was drawn for research. In the week preceding the collection procedure, I was given a five-day course of filgrastim, a white blood cell booster, to move more blood-forming cells out of the marrow and into my bloodstream. The drug gave me some bone pain, but not anything worth complaining about. The best part of the prep was that I was spoiled by everybody in my circle. A nurse came to administer the filgrastim each day (except the first and the last dose, which were administered at Emory Hospital). Friends and family brought me lunch and dinner, and inundated me with “we are so proud of you” calls! The mild flu-like symptoms and bone pain were a small price to pay for all the attention I was getting.
The actual stem cell collection procedure took just four hours. My blood was removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood was returned through my other arm. I was monitored throughout the process by the most friendly, gentle and compassionate group of nurses, at Emory’s Apheresis Center. And of course, I had my family with me during the entire procedure. To my own surprise, I was well enough to sit through Ra.One at the AMC cinemas that very evening!
All medical costs for the donation procedure were covered by the National Marrow Donor Program (NMDP), which operates the Be The Match Registry, and by my medical insurance.
Six weeks after my peripheral blood cells were grafted into the recipient, I heard from my NMDP coordinator that my blood sister was recovering well and had been discharged home from the hospital.
Nothing can be more beautiful and empowering than the thought that your effort has helped save a life. The procedure was the most profound experience of my life. I would do it again. Today!
There are several thousand south Asians waiting for that one match that could save their lives. Many will not find one, making their chances of survival slim. We could, collectively, change their odds of survival by registering today. Drives are happening in Georgia all the time. Or, if you want to do more, organize your own drives at local events. Find out more at www.marrow.org.
If you are lucky enough to get that call from the registry like I did, it will be well worth your time and effort.
This feature was originally posted in 2011.