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Mary Alisha,
Oh my gosh, don't let that doctor tell you that she will die without a transplant! Crazy! There are plenty of people here on this list LIVING normal lives with AA every day.
My son has had AA for 10 years. We are only now, moving to transplant. Thank goodness we waited. The progress that has been made with transplants over the past 10 years is phenomenal. There are always pros and cons with transplants and treatments. For us, delaying transplant was the right choice and every patient's circumstances are different. Our son did not have a sibling match, nor does he have a perfect match in the registry.
It has not been nearly enough time for your sister's doctor to declare that the ATG didn't work. Sometimes it takes months and months and with counts like that, you don't need to be in a hurry.
As Marlene said, the wbc is meaningless on its own. The Absolute Neutrophil Count or ANC or Neutrophil # is the important thing to watch for when she gets her CBC done.
It is patients with neutrophil counts below 500 that do not respond to growth factors that run out of treatment choices. These are the patients who will most likely need a transplant. Their inability to fight infection is the concern with these patients.
You still have choices! In the end, you may choose to proceed with transplant but I doubt that any doctor with AA experience would push for a transplant at this point.
It would be a good idea to explore whether or not she has any donors. Have you been tested as a match? Knowing whether she has a matched donor, either related or unrelated, is a good piece of information to have when making treatment decisions.
As Marlene mentioned... Dr. Young at NIH or Dr. Margolis from Children's Hospital of Wisconsin or Dr. Maciejewski at Cleveland Clinic would be excellent for second and third and fourth opinions.
Wendy/ mom to Grant Age 16.5
dx 12/4/98 AA
ATG horse
ATG rabbit
cyclosporine
mycophenolate
prograf
xenapax
danazol
anadrol
acupuncture
herbs
We've done it all!
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