Thursday, November 14, 2013

Aloha TeamHeart!


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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