2014 RHD Resolutions

Here Jean Paul greets young Ange...one of our favorite teens from near Butare. Ange has a bioprosthetic mitral valve replacement--and a smile to light up the room! Here, she was photographed a year after surgery by Mackenzie Craig.


Each Monday we are anxious to hear something inspirational to help us do a better job from various sources updating over weekend. Today's message on Movie Monday was in that category because it speaks to TeamHeart mission... Helping others to connect to save lives and be generous. If you would like to watch the 3-minute inspiring video, please visit:

http://moviemondays.com/261-generosity/?awt_l=9mouo&awt_m=JIhYvmlU0WSBtP

This video clip  led to a New Year Resolution list for RHD & Advocacy, which is always topped off by first, a safe screening and surgical trip,  this year scheduled  in 2014 in February to March 8. Taking 35 medical volunteers across the ocean and home  again safely is a priority. Getting 16 desperately ill individuals in and out of the OR and hospital safely is a priority of equal importance.

Through a generous grant from The Medtronic Foundation, the Bakken Invitation recognizes the volunteerism and advocacy of Jean Paul Iyamuremye.  Planning an advocacy resolution list involves Jean Paul and a group of local patients and staff who will develop and priortize to begin to implement in February. Starred items are already in the development or process. The list of participants involves patients as advocates, medical personnel  in nursing, medicine, pharmacy and public health  from Rwanda and US.

Suggestions have included:

Develop a statement of RHD advocacy with group consensus

*Promote pre- and post operative teaching by video, booklet, and individual teaching by patient support group.

*Care pathways individualized for patients. 

Advocacy for Warfarin distribution and testing.

*RHD prevention posters for health centers.

Radio drama for awareness and prevention.

"Tell the story" recordings—this might be a nurse, a patient or a business person.

*Collaborating with Rwanda leaders in nursing education via curriculum development.

Develop a speakers bureau to include patients, physicians, nurses--prepare and distribute presentations appropriate for range of audiences.

Develop a Rwanda Patient Care Network resource website…designed and managed in Rwanda in Kinyarwandan/English/French.

Promote social and economic initiatives to support the return of productivity of those having had cardiac surgery- collaborate with local development partners 

 WHO RHD booklet --translated and edited into Kinyarwandan and development of resource list, "what is being done in Rwanda currently to support RHD". 

*OR safety-Implement Cardiac surgery specific checklist.

*Translate Hearts of Courage to Kinyarwandan for local distribution....

Join us to help change the life of an individual with rheumatic heart disease from the bedside to economic stability and personal health maintenance--a life long process. 

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!

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=

October 18th at 7PM! Our annual Beerworks Fundraiser is back!

Come and support your friends to raise funds for their 2014 trip to Rwanda to continue saving lives of young people afflicted with rheumatic heart disease. We will be featuring some great raffle prizes such as luxury hotel accommodations, intense gift baskets, spa treatments and more!

New York Showing Of Hearts Of Courage

Team Heart, Rwanda requests the pleasure of your company at A Screening of "Hearts of Courage" a documentary by Boston native, Michael Fasciano

Team Heart, Inc.  is a non-profit medical organization founded to address and prevent Rheumatic Heart Disease in Rwanda.

Their efforts have laid the groundwork for sustainable cardiac care in Rwanda. Please consider donating: http://www.crowdrise.com/teamheartrwanda

The Sony Building

550 Madison Avenue

Thursday, June 13th

Seven o’clock cocktails followed by eight o’clock screening

Q&A with the team

R.S.V.P. requested

A fifth year anniversary during the week of remembrance

The first week in April is Genocide Remembrance in Rwanda.  It is a time for reflection and a time to grieve as a country. In 2008 we were invited by the Rwanda  Minister of Health to bring  a cardiac surgical team to perform life-saving cardiac surgery  young adults suffering from end- stage rheumatic heart disease.  We began on April 6, and as the country grieved, Team Heart provided a new beginning to 11  patients. From the first year we selected patients illustrating critical medical need, and selected those  making certain there was no bias of ethnicity, gender, religious or political party affiliation.

Now those 11 individuals, remarkable in their own right, have illustrated an ability and desire to return to a normal life and give back.

We know all are alive, but we have lost touch this past year only with Juma, the youngest who lived with relatives so he could have surgery.  There were two patients from a refugee camp, only Joseph remains in a refugee camp in the eastern part of the country.  The other, Jean Claude has broken the cycle of refugee living and supports himself by driving a moto taxi. He seems so competent and efficient and attentive to his job. Team Heart recalls so well the cycle of poverty we witnessed and we are delighted to see  self-determination to break the cycle.

Jean Damascene is at University in India in a combined Masters program in computer sciences. He recently wrote to us on the fifth anniversary of his surgery , April 9, to thank us for this chance and mentioned the despair he felt before surgery was an option, and how happy he is now to be a part of the future. Jean Hariyarimana is now a barber and helps to support his younger sisters. Lovely Alice is taking care of her children, her farm and becomes more beautiful and strong each year. Many of the patients look  to her for guidance. Celestine, our very first patient, now promoted, finished university and gives back on weekend as the treasurer for the cardiac surgical network. Samuson led the patient reunion in a wonderful song to celebrate Team Heart in February this year. Vedaste, is living in Kigali, operating a shop. Damien, works as a farmer in the agricultural region. Jean Paul is the backbone of Team Heart, works hard at his career and is an entrepreneur and always has time to do what is needed.

It is easy to see the effects of the genocide  when you look at  each patient  individually. Educations interrupted. Health care decimated for 15 years. Relatives killed, leaving  patients without their support systems of family and close friends. Many of our patients were orphans in their late teens and have had to rebuild a community around them.  It is truly remarkable to observe the resilience of the human spirit. This is a group of remarkable people, as are all Rwandese survivors of the genocide. These patients have also had to contend with a major life illness. They have had to come through major surgery, and must monitor their illness and focus on a healthy life-style for the rest of their lives. This adds yet another significant challenge as they try to move on with their lives. 

It is particularly wonderful for the world to see the incredible results cardiac surgery can bring.  And thank you to this group of patients for working so hard toward recovery and being determined to be part of the solution for the future.