A fifth year anniversary during the week of remembrance

Posted on April 12, 2013 by Ceeya Patton-Bolman

This week begins the 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 attendtive 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 the patients without support systems. 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 people 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. 
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A note of thanks to the 2013 Team

Posted on March 9, 2013 by Ceeya Patton-Bolman
I would like to thank each of you for participating in the most incredible trip to Rwanda. This was the trip that could be most pivotal to change the direction of how we provide care in many ways. 16 wonderful lives saved!! Looking forward, we have incredible partners, in Boston at the Brigham, and Spokane Healing Hearts, In Australia with Operation Open Heart and in Brussels, Chain of Hope. All expatriate Teams work closely with King Faisal Hospital and the Ministry of Health to raise the awareness for rheumatic heart and congenital heart disease and the need for an in-country program to address the burden of disease. It is remarkable the amount of dedication from 4 such distant locations, all wishing to help Rwanda look at this aspect of care so needed.

I cannot begin to separate out any one person for the participation, it was such a team accomplishment, and we were so dependent on each of you—and everyone did MORE than I could ever imagine. I hope as life settles down, you will take advantage of the opportunity to reflect, talk about our project, and, if you have thoughts to improve or strengthen or raise money, please let us know.

Looking at the larger picture for future care. …there are questions to be addressed as Rwanda wishes for a full time program. Where do we and the other teams fit in in the grand scheme of things? How can we best continue to support with visits and mentorship and move the agenda forward.  These will be questions needing to be addressed in the next few months….Can we help Rwanda make the choices to build a program thoughtfully and progressively. The teams involved are among the top...top in Brussels in Peds., top in Australia and top in US--all in Cardiac Surgery.. Rwanda can have no better support and guidance as they move forward.

Several people seem interested in the global cardiac surgery meeting in Geneva June 27-30, where representatives of the four surgical partners, Team Heart, Operation Open Heart-Australia, Healing Hearts of Northeast and Belgium Chain of Hope, will meet with the cardiologists from Rwanda and key leaders at the Ministry of Health and King Faisal Hospital Rwanda to discuss the future of cardiac surgery in Rwanda. … http://gfhm.ch/

To each of you....

Fondly and gratefully, 
Ceeya

Let me just add my sincere thanks to everyone on the team, and to everyone back home who supported us in our efforts. I think, in many ways, this was our most satisfying experience so far. Maybe we are figuring this stuff out. In any event, the team was incredible this year. Everyone jumped in and did absolutely whatever was needed, day or night, no questions asked, and they did it with a spirit of love and generosity that is truly remarkable to behold. We live in such a cynical world that it is very inspiring to me to see the true character of people when they are placed in a position of responsibility in the form of caring for people who have so little and ask so little, and yet who need so much. What a privilege for each of us to be able to do our part, and to see it reflected in the simple smiles of thanks from the patients and their families. Life can have no greater reward. Like Ceeya, I cannot begin to single out individuals for special thanks. You are each and every one so special to us and to the patients we were privileged to serve. Thank you.

With profound gratitude,
Chip

“If not this, what? If not here, where? If not now, when? If not us, who?” February 10, 2013
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Team Heart mentioned in Entertainment Weekly!

Posted on February 22, 2013 by Ceeya Patton-Bolman
The film, Open Heart,  up for an Oscar is also 
about Rwanda....and children suffering from 
rheumatic heart disease. 
Thank you Keif and Cori for bringing this wonderful story to the international community. Many of you know, since 2008 Team Heart, Inc., (501 c 3 27-1435443) is one of four teams, (In order of appearance, Operation Open Heart Australia, Team Heart, Chain of Hope, Belgium and Healing Hearts of Northwest, Spokane WA) operating on children and young adults with rheumatic heart disease IN Rwanda.  Our Team just completed their sixth trip providing surgical intervention on 16 individuals who had no other chance of survival. Patients are doing well but the work earnestly continues to coordinate post-operative care in a resource poor setting.

Team Heart alone has provided care to nearly 100 individuals bewteen ages 14-44 years and at this time, currently supplies Coumadin for all those who receive mechanical valves—including the children operated in Sudan or India. Although there are four Rwanda cardiologists for a country of ten million people to  provide the follow-up care for our patients, one of the biggest challenges has been a consistent supply of Coumadin not readily available in country and the increased need  to see patients in follow-up and evaluate post-operatively how they are doing.

Team Heart provides not only life saving surgical care; we are actively led a screening of 3000 school-aged children to detect early disease for intervention, to prevent further progression of heart disease. In collaboration with the Rwanda Heart Foundation, an Awareness and Prevention program was developed. We initiated a c collaborative with the schools of nursing to change the curriculum to include an emphasis on heart health including rheumatic heart disease.  In 2009 we identified a young surgeon and assisted in finding a training program, now  he is currently nearly halfway through a five year program. In regards to education, we have developed a curriculum for internal medicine physicians to increase their knowledge base for cardiology to better provide care and diagnose of cardiac disease.  We support a patient network of over 160 patients in the country who need follow up information and support to maintain good health. Returning to school and work is an important part of the effort to return to normal life. 

From the beginning Team Heart’s goal was to help build a sustainable comprehensive program in cardiac surgery in Rwanda to address this significant burden of disease. Rwanda is a landlocked country that borders include over 10, million people, 80% are within the poverty range.  Burundi and Congo and eastern Tanzania have no cardiac program, so the potential population of people to be served is well over 40 million.

Challenges in all programs like this are immense. In order for progress to be made in one area means a power shift from another. Competing for the same funds in the global world is difficult in a world where surgery is deemed too expensive, unless of course it might be your child who needs the surgery. 

Rheumatic heart disease  (RHD) is a disease of poverty and children.  Neither category has a voice in decisions about care in most settings around the world.  RHD is caused by, repeated bouts of untreated strep throat where inflammation destroys the heart valves or kidneys over a period of years. Eradicated in the US and most of the western world it is a disease process that is silent over time until congestive heart failure is recognized. Unfortunately, at this advanced stage, only surgery is the answer to return the patient to good health; ONLY IF follow up and medication is available and provided.

Let this movie be a CRY OUT to encourage those in health care to make the changes necessary and to put jealously aside to provide the care needed.  Demand that sustainable cardiac surgery be possible to those who need it while forging forcibly ahead with an educational, prevention and early intervention. Sudan is one wonderful  place where care can be provided, but it is not enough for the anticpated 15,000 individuals in Rwanda who need our help. Top surgeons and committed efforts from the US, Australia and Eurpope  are helping Rwanda to develop a program now.  Top leaders in Rwanda recognize the need and have pledged their help.   Help us to help Rwanda achieve the program needed.  


http://insidemovies.ew.com/2013/02/15/oscars-documentary-shorts/5/
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Shout out to the Team Members

Posted on February 18, 2013 by gabby aka Susan
Suellen and Ellen with their patients



Every year for the past 6 years we have come to Kilgali Rwanda to do Heart Surgery on 16 choosen patients who would die without it.   We have become comfortable with our core team of so many who have worked for years to make this mission better.   I must say, there are a few who came and worked without a day off and i want to give a big thanks to these folks.   Cardiologist Pat and her echo stenographer  Marilyn provided evaluations for the selection process and were available until the last few days to do post op evaluations on our surgical patients.  Marilyn's fine work prove to be life saving for one of our patients who needed additional surgery to heal.   The extraordinary surgical team of perfusionists, Anesthesia, OR nurses and surgeons worked from morning until late night during the eight days we did  surgery.   Connie,  ICU resource nurse worked 11 straight 12 hour days...exhaustion is not the word....and Pam, our night charge nurse 8  12hr shifts out of 10 days...MGH you are lucky to have such fine nurses.

I think the two people who tirelessly worked everyday was Suellen and Ceeya.   Suellen is our step down/ ward team leader.  She has come on every trip with Team Heart.   Her role is vast as she is the one person who the patients see from beginning to end..   She was part of the selection process, pre op visit, and teaching, orienting staff and opening the Ward. She is available to the staff everyday and continues with the patients in their discharge teaching.  She helps tie up loose ends and believe me there are lots of them.   She also closes the ward and makes sure the closing goes as smooth as possible.   I admire her and her work.   She quietly loves all of the patients and they love her too.    Ceeya does so much both with the actual mission and behind the scenes that i am not sure how she does it.    The social issues of our patients are vast and she has always tried to make the transiton from hospital to living life as smooth and as promising a possible.   She deserves a assistant and my hope is that she can someday afford to have a counterpart in Rwanda to follow through on all the needs of our patients.  She is a true leader.

Ceeya so hard at work
We all worked so hard and now i am starting to feel the fatigue of working 9 12hr days...but my passion for this work has not diminished.   God willing i will return in 2014.
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Stepdown is HUMMING!!! 2.17.2013

Posted on February 17, 2013 by Ceeya Patton-Bolman
Stepdown is busy...very busy and very happy. Jean Leonard, Thamar and Letitia will be going home.  We have become very fond of this entire group of patients but this is the first "large" group to depart. Gukunde left yesterday and has called to say he is well. We are very pleased with their progress, but it is sad to see them go in one way...delighted in another.

Yesterday was patient photo day. It began with seeing all the patients out in the sunshine and how healthy and vibrant they were looking. With permission we began to snap photos and they really became an active part as they realized Sue Gabriel had brought a printer and our souvenir to them was a group photo copy to take home!  It seemed like the entire hospital wandered over to watch and smile as they began to realize this was the open heart team patients. The festive feeling followed though dinner and no one wanted to settle down for the night. Sheryl Sanders from Lincoln, NE and Nadia Aires, Boston  had a hard time convinicing them sleep was good thing and part of recovery.

This is always bittersweet...so much work , so much anxiety in the preparation, yet so much joy. The hand over to the local team  is in progress and the voices of Sue Gabriel and Sara Stankiewicz, and Egidia Rugwizangoga carry across the courtyard to pharmacist Bonnie as they give instructions (again). The church below is singing hymns and occasionally the patients join in.

 I have had so much fun watching these dedicated nurses these past two days and Bonnie with JaBaris Swain complete  the handover. They are like mother hens reinforcing teaching and medication guidelines. It was not planned but it is a Brigham and Women's Hospital team today and they rival a flight crew for coordination.
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Hearts of Courage

Posted on February 16, 2013 by Ceeya Patton-Bolman
February 11, 2013 World Premiere! Hearts of Courage, a film by Michael Fasciano

In 2012, Michael Fasciano returned to Rwanda to follow Team Heart  for his second Rwanda based film, showing the team delivering care to young teens and adults with critical rheumatic heart disease. Following patients and medical team, he captures the emotion of the team as they struggle with patient selection, (to ensure fairness and an ethical solution for the critically ill who have no other chance).  The film shows the patients as they recover rapidly and rejoin life and their community moving from critically ill to hope for the future. 


Many of the patients included will capture your heart, but Michael follows  one of the handful of past patients who serve as  team volunteers. They serve  as  interpreters for the team by communicating to the patients and families when needed and coordinate transportation.  

Following the team as they visit the rural village former patient, Erneste Simpunga calls his home to meet his parents and relatives. Erneste is followed  through the process of applying and being accepted to  to medical school in Rwanda which helps to illustrate the benefit of good surgical outcomes and good health post-operatively.  The return to a normal life, to be able to help support family and self  with the dream to someday give back himself to help others is a theme through out. 

It is clear the wish for good health and return to normal life for their patients is one  motive for this medical team  as the patients one by one rejoin life in good health.

 It takes a very special team to travel around the world and donate vacation time, several for the 5th consecutive year to provide the best care possible in  this setting. 

Open your heart!
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ICU-Docs! The best!

Posted on February 14, 2013 by Ceeya Patton-Bolman


Meet our behind the scenes team caring for patients after surgery. The intensivist is a physician coordinating and providing care for patients in the ICU following surgery. They can be boarded certified in critical care but also have back ground in anesthesia, Internal medicine, pulmonary medicine, surgery or Pediatrics. Working closely with the nursing team and the surgical team they are the glue who keeps us together and focused during the most critical time.  These two, shown here with Chip have been exceptional to work with and provide care for our patients.

Dr. David Morrison is returning for his third Team Heart trip. An anesthesiologist from the Gundersen Clinic, in LaCrosse WI. He traveled with CARDIOSTART on a cardiac surgical  trip before we met.

Dr. Norm Yunis is a pulmonary medicine intensivist and works at North Memorial in Minneapolis, MN. This is first Team Heart trip.

They received the highest complements from the ICU nurses this year--which given the incredible nurses we have,  great praise!
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A few thoughts from the Stepdown Ward…

Posted on February 11, 2013 by Sara
In 2009, I came to Rwanda for the first time. I had previously done mission work as a nursing student in Kenya, but cardiac surgery and Rwanda were new to me. I was excited to learn about this beautiful country and to work with Team Heart as we changed the lives of several very sick Rwandans suffering from Rheumatic Heart Disease. Flash forward to 2013, and my 5th trip to Rwanda. I continue to be in awe of this country, it's landscape but more importantly the people. In the last five years, I have been fortunate to have provided nursing care to nearly 60 Rwandans ranging from 15 to 45 years old.  Their stories of struggle and illness preoperatively are profound and their recoveries after life saving cardiac surgery (specifically heart valve replacement/repair) is miraculous. Last Saturday, about 40 of our former patients travelled to Kigali for a reunion. Some travelled by bus for 8hours! Seeing these patients healthy and happy is overwhelming. I can remember how sick they were before surgery, and their daily progress in the Ward after surgery. Now, if not for the chest scar peeking out of the top of their shirts, you would not know how near death they all were at one time. They have returned to school, gone back to work, gotten married and some have even had babies. It is remarkable to see them all together, hugging and catching up. It is such a privilege to be here doing this work. This year I was fortunate enough to have my husband Justin join me for the first two weeks of our mission. He worked hard with the preoperative team, screening potential patients and helping prepare them for surgery. At the end of his two weeks, he was finally able to understand why I return to Rwanda year after year. Pictures don't do this experience justice. It is the best thing we as medical professionals and people can do. The 40 or so Team Heart volunteers are all such special people, donating their vacation time, money and time away from their families to be here for almost 3 weeks. Today is our last day of surgery, the step down ward is booming with 11 patients and 5 more expected to move over in the next two days. They are all amazing individuals, aging 16 to 45, from all different parts of the country, but now all bonded by this shared experience of heart surgery. I am already looking forward to seeing them all next year, a year post op with stories of renewed hopes and dreams.  Thanks for supporting Team Heart and following our story...
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Slideshow!

Posted on February 10, 2013 by Ceeya Patton-Bolman
First batch of pictures! Saturday morning, 2/9, in the OR at King Faisal. Check out the slideshow through the link here:


More to follow!

-Mackenzie
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Getting to Know You: Part I

Posted on February 10, 2013 by Ceeya Patton-Bolman

As one of the only non-medical members of Team Heart here in Rwanda this year, I can’t say I know much about the details of heart surgery.  I’m grateful that we have a whole group of really smart, thoughtful people who ARE experts on the subject and are anxious to share their stories—I promise to leave that part of Team Heart ‘s day-to-day in their expert hands. 

Before arriving in Rwanda, I wondered how I might find a way to really connect with Team Heart—and how our supporters, followers, friends, families, donors, and general Boston fans might do the same without the benefit of a medical background. It became clear pretty quickly that these patients are something special, and they all have a story. To me, that’s the hook.  These patients have names, faces, families, dreams, some amazing curiosity, and now, bright futures.  What does it look like when they start to feel safe again after the surgery? When they realize they’re not going to die, and they allow themselves to feel hopeful? When do they lower their guards? These patients have been given back their lives…what will those lives entail going forward? 

Over the last week, I have watched some of these stories unfold.  Some stories are in their infancy; some are second hand; some started with Team Heart at the beginning and are incredible to see today.  There is one gentleman who is currently in the step down unit at King Faisal. He was the first surgery of the 2013 trip, and he is just amazing.  This patient is older than most of the people we see, but at 39, he has a beautiful wife, a new baby, and a good job at the Ministry of Defense in Rwanda.  This past Monday, he had a successful single valve replacement operation, and just 2 or 3 days later, he was like a new person.  I first met him in the ICU recovery room after his surgery, and soon after that, I found myself looking forward to seeing him each day.  Many of the patients speak a minimal amount of English, and when they are weak and tired in the days after surgery, it’s hardly a surprise that they don’t feel like saying much in a secondary language.  This man, so soft-spoken and warm and smart, surprised me with his mastery of the language and seemed to go out of his way to engage us every day.  “Good Morning, Mackenzie” was the simple greeting that I looked forward to.

I could gush forever about his sweet personality, but it was one particular conversation with this man that will stay with me.  As I sat next to his bed chatting and sharing pictures one afternoon, he politely asked if he might ask me a “complex question.” He explained that, to him, Team Heart seemed like a military operation. He wanted to know how the whole thing worked, and I was struck by his thoughtful questions:  Team Heart is so organized, how did that happen? (The answer to that one was easy: Ceeya!). How do we pay for all the medical supplies? How do we get them here? Do we leave our families behind in the United States to come to Rwanda? Is that hard for us? How do we pay for the trip? How do we get so much done in so few days? How do we take time away from work for the trip? Are we working together with the government in Rwanda?  How will the program go on once we return home? Maybe I shouldn’t have been surprised by his questions, but I was.  These patients come to us in need of help, feeling quite vulnerable, and Team Heart heals them. That’s enough for anyone to try to process. But he had thought so much about the program beyond what he was seeing first hand, and I realized that he truly cared beyond the scope of his own experience.  It was a meaningful reminder that these surgeries change the lives of the patients, but they also change the doctors and nurses and team members who become part of that story; in the big picture, this project forges deeply strong bonds and connections among people—and even though we are the caregivers, the patients care for us too.



- Mackenzie 


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