Wednesday, November 20, 2013

Tribute to Shabani

We hesitate to open Facebook today. The tributes yesterday to Shabani, a young man who died suddenly 11.19. 2014 several years after an aortic  valve replacement for rheumatic heart disease, broke our hearts, reminding us of how connected this smiling, happy young man was with his family and friends.  The messages from US team members and the photographs of a very handsome smiling young man surrounded by his nurses convey his reach across the world. Even so, I am sure his Kigali friends and family feel the grief more passionately than we possibly could. He was part of your daily life and you were fortunate for it.  And Shabani always talked about his family and his friends.

I know TeamHeart followers who do not know us well  (and some who do), are confused about why a cardiac surgery team becomes so sad at the death of a patient we knew for some short weeks. After all, cardiac surgery teams see life and death daily. But many patients capture our hearts, we stay in touch over time and Shabani was certainly one. His cheerful smile and happiness at being alive was infectious.  We choose team members who not only are experts at what they do, but are compassionate and caring individuals-- one of our main selection criteria, but really--everyone simply loved Shabani.

Shabani had surgery by a team ranked in the top ten in the US—among the best of the best. And we travel to Rwanda for two reasons.  First, because there is no permanent in-country cardiac surgery in Rwanda providing care for those who need it.  Second, because people of low-income seldom have a chance to leave the country for life-saving surgery---and certainly, few over 15 years are identified if they are low income. TeamHeart, one of the four teams in a collaborative effort, has developed a system- shipping 2000 lbs. of supplies, booking some 30 health care providers, set up OR theaters with highest quality of supplies. We do this in collaboration with the Ministry of Health. The Team is not paid, we pay our own airfare, we donate supplies and vacation time required to travel. The Ministry pays part of the accommodations and the patients hospitalization is covered by Mutuelle de Santé. For those who cannot pay the 10% co-pay for surgery, it is covered by the Rwanda Ministry of Health. So this is  joint project with the goal of a regional in-country cardiac surgical program to provide essential care  to all who need it.

Shabani did well with surgery and was actually discharged looking pretty good! But we knew when we saw Shabani’s echo after his re-admission several weeks after he went home, his heart was not working as well as immediately following surgery.  He had good care with the local team and his family made certain he had the 10% co-pay to be seen. He was able to buy medications, most of our patients truly cannot.

If there is one thing we can honor Shabani with, we can have as an “action plan”; it is the determination to improve and increase cardiac surgical services so there is not a several year delay in surgery when it is critically needed. If Shabani’s ventricle had not been so damaged by the inefficiency of his aortic valve damaged by disease, he would potentially have had 35-40 years to share that smile with all of us. 

Each year we are presented with around 70-80 patients to consider accepting from a waiting list that is said to near 2000—and this is after the local cardiology team serving the public sector have gone though their list and selected the candidates who are sick but thought to be able to survive the surgery and return to normal life. Over half of the patients, if not more, should have had surgery before they present to us, by several years. But as you know, access to the only two cardiologist in the public sector Rwanda is difficult, the waiting list is long for they are very busy.  And most young patients do not consider heart disease as a problem they might have.   Unless RHD detected by a routine physical examination early, by the time the patient shows symptoms such as shortness of breath and fatigue, the disease has been there for at least 3-5 years doing silent damage. There are children as young as 8 years affected but the average age is 14 -35, with average or usual  age  of 19 years.

Rheumatic Heart Disease  (RHD) unfairly targets poorer impoverished countries.  And for anyone living in the Rwanda or fleeing in 1994, that would be true.  Larger families with some crowding in the home, poor nutrition during war or crisis, little access to medical care for lack of resources are often the key indicators for RHD. It begins with just a sore throat….and even today in Rwanda our patients will tell you; many feel they  might be ridiculed  by the health care system for showing up with a sore throat in the clinic to be seen. That must change. Simple penicillin treatment of a strep throat will prevent progression of disease. Even once RHD is identified, monthly injections of penicillin can prevent progression of disease in many many cases. 

The only way to prevent new patients having the disease is a country-wide approach to fight rheumatic heart disease upfront; RHD prevention and awareness and early intervention. The Rwanda Heart Foundation is part of an ASAP program.  ASAP Advocacy, Surveillance, Awareness and Prevention.  It is a good program and should be implemented and embraced.

The patients are unknown to us at the beginning, but a great number of them will win our hearts. Shabani was one. He invited us into his life and shared his thoughts and opinions.  He was a very bright young man, someone who Rwanda could/should be proud of. Our team rejoiced last week as he received his degree and diploma in accounting from University.  He had plans to attend for Masters. His smiling face appeared on Facebook with his wonderful Mom and friends.

Our Boston based hearts weep with you.  But rheumatic heart disease is a preventable disease. #Letusfixthis!

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 :