“andIstopped taking themedications thatI
neverneeded inthefirstplace.”
He considershimself lucky tohavemet
Aimé-Juedes.
“Marysavedmy life.”
the initial lownumber in 2006. A side ef-
fect of thosemedicationswas respiratory
problems.
Tests confirmed he never had cardio-
myopathy. A cardiologist toldhim to stop
taking theheartmedications.His respira-
toryproblems vanished. “Fortunately this
misdiagnosiswascaught,”saysWinemiller,
For Gail Wais, the presence of Aimé-
Juedes, her patient advocate, means that
doctors aremorewilling to look over her
complicatedmedicalhistoryandsharetheir
thoughts.
“Theystandatattentionwhileshe’sthere,”
saysWais,whose swollen facehaspuzzled
doctors. Aimé-JuedesknowsWais’ history
well enough that shemay say to thedoctor,
“That’sbeentried.Whatcanyoubringtothe
tablethatwehaven’tseenyet?”
Patient advocates help empower their
clients tobecomemore savvyhealth care
consumers.WhenSusanKaplovitzwastold
abouta typeofbrainsurgery thatwouldre-
duce the symptomsofParkinson’sdisease,
she andSavastano researchedopportuni-
tiesfortheprocedureinherarea.Savastano
encouraged Kaplovitz to pay attention
tohercomfort levelwitheachteamandnot
todevalue intangibles, likeawarmperson-
ality.Newlyempowered,Kaplovitzrealized
shesoughtbothcompetenceandaccessibil-
ity,whichmade iteasy towhittle the list to
threedoctors.
Afterpepperingteamsatthemedicalcen-
terswithquestions, Kaplovitz ultimately
chose an institution that offered the best
aftercare, including an on-site support
group,accesstoaphysicaltherapyprogram
forParkinson’spatientsandspecializednu-
tritioncounseling.Bythetimeofhersurgery,
“Iwasno longer afraid,”Kaplovitz says. “I
knewenough.”
Patient advocates canhelp their clients
solvemedicalmysteries because they can
spendmore time on research thanmost
primary-care physicians. When Aimé-
JuedesmetBertWinemiller, shewondered
if he had a respiratory problem. He had
been coughingandwheezing forfiveyears.
Aprimary-caredoctorranrespiratorytests
and toldhimhewasweeks away fromdy-
ingbecausehis lungsweredeliveringbarely
enoughoxygentokeephimalive.
WhenAimé-Juedes examinedhismedi-
cal records, she discovered that a heart-
function indicatorhad risenover time.Yet
five years later,Winemiller still was tak-
ing drugs for cardiomyopathy based on
SANDRAYIN
isa freelancewriterbased inRockville,Md.
Shehaswritten formanypublications, including
TheNew
YorkTimes
and
TheChronicleofHigherEducation
.
“It’s
DRAININGENOUGH
tobesick,
letalonehaving todealwith
thehealthcaredeliverysystem.”
AA.COM/AMERICANWAY
MAY 01, 2013
43
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