As we begin the countdown to our Surgical Development Trip
February 24-March 15, we are 85 days and counting.
But for 4 of us, we are having a wonderful break in the
planning. Many of you have heard of one
patient from 2008, Jean Paul, winning
the Bakken Award. His prize includes a round-trip ticket and expense
paid trip to Kona, Hawaii on the Big Island, where he will be recognized for
his Volunteerism and Advocacy for his work with Rheumatic heart disease. TeamHeart will receive a grant to continue the
Advocacy and Patient Support that Jean Paul is so committed to. This includes
buying Warfarin since it is not available in the country reliably, providing
testing for INR (anti- clotting…important when you have an mechanical heart
valve), helping with some limited career choices or education, or maybe just
bus fare to see the physician. All very much a critical part of healthy heart,
healthy life styles for patients having had surgical intervention for RHD.
Let me tell you about
Jean Paul. Although, TeamHeart began our work in Rwanda in 2007, the Australian
Team was there to operate first and did children with ASD, VSD’s and some off
pump cases—all congenital disease and also a HUGE need. A small Brigham based
fact-finding team was in country to cataloq needed equipment to perform valve
surgery safely. As we rounded with a team of Australian and Rwandese
physicians, Jean Paul, early 20’s, bed-ridden, emaciated and incredibly ill with
bacterial endocarditis. The Rwandese
physician asked the Australian team to do him that visit because he was so near
death. In English, the surgeon said he
was too sick and if he survived his treatment course with antibiotics, perhaps
the Boston based team could do him. Jean
Paul spoke some English and he reached up and took our hand and spoke clearly,
“come back Mummy to save me”. Not sure
Jean Paul would be alive, five months later we did just that.
Jean Paul was the first mechanical valve to be done in
Rwanda. There were other wealthier patients who had traveled outside the
country, to receive surgery, but not many. Patients of privilege and power, not patients who
were poor. He was one of 6 patients to
have a valve replacement performed on the inaugural trip and immediately a system
had to be devised for follow up and INR management. Jean Paul has been part of that system solution since
his first clinic visit.
Jean Paul is a wonderful generous person. He might not have wealth by "artificial" standards, but what he has is always shared with others in the Rwandese way. From
the very first, he would introduce himself to all of the patients waiting and
discussed their lives and what the barriers to care were for each. He was able to buy a car and use for a taxi
and work the hours he could. Now he has a successful business of transportation
and tours, called Good Heart Tours. I still will occasionally received an
incredulous email from someone from other US city—“I just met this young man in
Rwanda and he talked about the life saving care he received in Rwanda…did you
guys really put a heart valve in that country”???
It was a natural transition to collecting all the patients
and having them share their experiences and joining forces to support each
other. And the patient Care Network was born. Led by Jean Paul and Deborah, a
mitral valve replacement from 2010 the organization has expanded to include
those patients from other teams, as well as those from India or Sudan having
had surgery abroad.
As Team Heart struggles with questions of care delivery and
pushing the envelope to make sure a voice is heard from patients’ ages 15-35
with rheumatic heart disease, Jean Paul is one strong advocate. The world is
surely a better place because of him --and children and young adults have a
fighting chance now with just one incredible person in their corner.
He is here with his lovely and devoted wife, Jacky. Congratulations Jean Paul. You are our inspiration.
For more information about the Bakken Award, please visit : http://newsroom.medtronic.com/phoenix.zhtml?c=251324&p=irol-newsArticle&ID=1822170&highlight=
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