Blue-Sky Thinking
It may be that those who do most, dream most.
STEPHEN LEACOCKwould have been the pregnancy,” says
Farooq. The condition is treatable with
an immunotherapy drug called eculi-
zumab, given as an infusion. It comes
with an extremely steep price tag,
though, which gave the team pause,
since it would be difficult to get insur-
ance to cover it without more evidence.“But we had treated her for lupus,
and she had not responded,” says
Farooq. “If you’ve turned right and it’s
the wrong way, then you have to take
a left turn.” If Megan did indeed have
this genetic mutation, they needed to
know urgently. “The chance of death is
very high in these cases, because the
condition can affect other organ sys-
tems besides the kidneys.”
Before such an expensive drug could
be obtained, genetic testing needed
to be completed. That took 10 days, a
tedious wait for Megan. “My familyand I were tired and just so sick of
being in the hospital,” she says.
Although her baby was well looked
after by her family members, and she
saw him almost daily, the separation
was painful. “I was afraid I wouldn’t
get that attachment you need with a
newborn,” she says. When the results
finally came in, showing that Megan
did, in fact, have this genetic mutation,
she was able to have her first eculi-
zumab infusion immediately.
With the right diagnosis and, finally,
the right treatment, Megan’s blood
pressure normalized and she was able
to go home at last. Her eyesight cleared
a couple of months later. Because of
the extent of the kidney damage, she
needed dialysis for four months, but
her kidneys eventually recovered, too.
Today, Megan is busy with work and
family. She was able to taper and then
end her eculizumab infusions, but since
her genetic mutation is so rare, not
much is known about relapses. She
watches for any signs that her condi-
tion is flaring up again, and she’s devel-
oped techniques to manage stress,
since that’s a trigger. “I’ve started work-
ing out more,” she says. “I also try to
relax my mind, not be so anxious, and
go with the flow.”“I WAS AFRAID I
WOULDN’T GET THAT
ATTACHMENT YOU
NEED WITH A NEW-
BORN,” SAYS MEGAN.reader’s digest
26 april 2020