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 Health  Rwanda Project #24670

Team Heart

by TeamHeart, Inc.
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Rwanda makes much-needed changes in leadership to provide a center to house specialty cardiac care during our most recent trip. As the death rates decrease for TB and malaria, NCD diseases are on the rise. As physicians and nurses increase skills for diagnosis, there is an increasing backlog of patients needing intervention. 

Follow the story of Rachel. Rachel was diagnosed during pregnancy. Her heart failure made it difficult to take care of her chores in the family home where her husband took her. He resented her slowness as she carefully walked to fetch water.

However, Rachel was screened 3 times before she was accepted as a candidate for surgery. Each time her echo came up for review, everyone agreed she would do well with surgery, but there were others too sick, who would not survive another year. And during her echo screening in 2016, she was so hopeful, because now she was one of the acutely ill patients. She felt there was a reason she had survived when so many others had not. 

You cannot do cardiac surgery in substandard facilities. And Rwanda is a country still struggling to recover from the 1994 Genocide against the Tutsi. As health care rebuilds, there are many competing priorities--all important. But there are many patients our there like Rachel, and with some help, they can have their surgery, return to health and be part of the efforts to make a difference. 

Rachel did not give up, so neither can we. 

https://www.youtube.com/watch?time_continue=55&v=3aBJF8-xC5E

J. Frank seven days after surgery
J. Frank seven days after surgery

Our surgical development trip begins with the first 7 members of the screening team meeting the Rwanda cardiology team for a long hard week of patient evaluations. Each patient has previously been diagnosed by a Rwandan cardiologist and felt to need a referral for surgery. Mutually agreed upon parameters guide the referral process. The candidate must  be healthy enough to survive but sick enough for the team to feel they cannot wait until the next team arrives. The Rwandan 5 cardiologist  are very good at this by now. They unfortunately have to watch as those who are very sick or develop complications die while often waiting for a team.

It is a powerful experience. Patients feel this is their only chance. They have been told by their referring physician the seriousness of their condition and just how necessary this critical surgery is. They have also been told their biggest risk will be-- to not be selected. You immediately see how weary some patients are just to reach screening. They have been compromised by illness for months, some for years. Many leave home the day before to sleep on the ground outside the screening hospital with a colorful kanga wrapped as a blanket around their thin bodies-- or if lucky, on the floor of a relative in Kigali. They begin lining up near daylight to enter the hospital holding their worn slip of paper that states they have gone through the process of registering for the community based health  (universal insurance, which costs about $2.50 a year per/person, yet still is often not affordable)  and visited at least 2 other health centers for referrals. Most often they have very little cash, as it is not unusual to be near bankruptcy after a long illness. They are exhausted, but dare to hope. That hope is shaken as they see others waiting, some more ill, some less. They have heard, only 16 will be selected.  In the custom, they greet each waiting with nods and quiet spoken greetings of respect.

For months, the US based surgical team has been reviewing lists and requesting donations of supplies. Donations are often made out of loyalty to hospitals or health systems, but there is only so much one company can do. Team Heart founder Chip Bolman states, "We all know this is temporary. You cannot build a sustainable program on donations". The future of these programs depend on a partnership between humanitarian pricing and industry.

In Vermont, the University has been incredibly generous over the past 3 years. They show a great deal of pride in "their team" led by surgeon Bruce Leavitt, and UVM supports them well. This year about 10 of the volunteers will come from Vermont. But Team Heart is stressing their generosity as critical gaps are identified and more items join the list.

Much discussion about valves, sutures,  and value of some higher cost technology flies back and forth from Vermont, Massachusetts, Nebraska to Colorado. Safe care is priority with realization that keeping cost down ultimately means that high priced technology will not reach Rwanda as they begin to do surgery more independently in the coming year. 

In NH, a perfusionist orders supplies for the heart lung bypass machine. They do not do cardiac surgery yet in Rwanda independently, so they are not going to have anything to "make do" if something is forgotten. Lead perfusionist, Dan counts, checks, counts, and  checks. He is mild-mannered and polite and has the presence of competency. The supplying companies respect him so they agreee to donate $26,000 of supplies--again. The donated supplies are definitely top of the line, with valid expiration dates. The program in Rwanda would not be able to purchase them due to cost. But Dan has designed a pack costing 1/3 of the cost of this pack—but no one wishes to manufacture that pack without a larger number to order.  He gives the supply list one last  long look--he will see them next in Rwanda where he will divide the boxes into 16 separate cases. He delivers them over to Sara,  knowing they are in good hands. 

Still on the US side, Sara, a petite nurse pushes around 30-50 pound boxes, as if they were lightweight onto a scale and with a tape measure quickly finds the dimensions. She stacks the boxes as a puzzle, hoping to balance weight and size to obtain a perfect 48 inches X 48 inches X 48 inches X 48 inch. She counts, checks expiration dates and notes how many of certain items are there.  Sara documents every detail. Where was it made? What is the shipping code? How many in one box and how much did it cost? Not only an expert medical ICU nurse, she has also become an expert in shipping medical supplies internationally. She stacks on pallets and admires her perfect puzzle. She wraps each separate pallet in saran-like wrap ready for the iron bands that wrap to keep from shifting during their 7-day air trek to Rwanda. She has given up a week of her life to do this,  and it is done well. Her ER Medicine physician husband and two toddlers have all participated in this endeavor. Young Henry rides in bicycle through storage halls and Amelia naps in a stroller. Sara oversees the loading of the pallets on the truck and only then breathes a sigh of relief. She signs paperwork, as a “known shipper” allowing consent to search, acknowledging she is not a terrorist, and the expectation that the supplies representing a quarter of the near $160,000 donations will reach Kigali in one week—plenty of time for unpacking on February 2.

Meanwhile, In Rwanda at Oshen-King Faisal Hospital, checks are made for laboratory supplies, air conditioning repair to keep surgeons happy, nurses on duty, and blood gas cartridges and the state of oxygen concentration, portable chest film access and generator system checks. They must take care of their patients while preparing to care for ours. Local teams must stop surgery early enough to clear the hospital surgical wards. They have to move crtically-ill patient s recovering from a brain tumor to a makeshift ICU to make room for our patients. This means reduced income for the local hospital. And they do it willingly and with a graciouness that defies expectations.  Discussion about systems billing to arrange for the “free” care, medications in stock and the physiotherapist on duty. The proper paper work is completed for the screening appointment required to notify admissions. Judith, an organized ICU nurse oversees all and confirms orders of  what is missing.  Her check list increases. Public relations is wary of the sheer number the team brings, trying to accommodate everyone and share the hospitality Rwanda is known for and team has experienced for 12 straight years.

The  team arrives over two days exhausted and excited. Everyone has brought their skills and expertise to share with 16 very ill young people and colleagues with friendly welcoming faces. One volunteer stated, she has spent her entire career waiting for this moment. To give back and teach others, but this time,  in a place where they are the only cardiac team for months who will take on this type of complex cardiac surgery. There is a sense of responsibility from the volunteers who give thanks for what they have in US and for this amazing opportunity to help others in such a beautiful country with warm people. 

Selection Sunday shows the fatigue of the screening team who has worked 6 straight days 12-15 hours a day. They have maybe 30-40 patients who could benefit and will not survive another year, or if they do, their hearts could be too damaged for another chance.  No one they see will survive this disease without surgery. They have spent hours with the patients, hearing their stories and wanting them to have one of the 16 slots.The surgeons review the physical exam and asks probing questions. Highly skilled sonographers show images that make even a seasoned team catch their breath. With disbelief they again ask  the age, and by now the surgeons and anesthesiologists are even looking exhausted as they contemplate the amount of disease, the few slots. Each person in the packed conference room is encouraged to share their perspective. The Rwandan cardiologist team knows the  family and the potential or lack of support present. Nurse Julie knows who the family planning will be a challenge to engage for female patients—a topic of immense proportion if the mandatory blood thinners are utilized as required following a mechanical valve replacement in a culture where the possiblity of child bearing means everything to a future of a 17-year old girl. The clinic nurse knows who returns for follow-up and who does not. Ethics collides with reality as everyone must readjust to a normal that is just beginning to sink in.

Everyone files out of the room slowly and much quieter than on entry, a combination of jet lag and anxiety showing on every face. Each team is seasoned professionals, with here and there a new volunteer or one fairly young in their career to balance natural transition of the team for the future.  Each person mentally reviews their checklist. Do you have every critical item, and are you prepared? The team is awesome, some of the very best. They are the ones you select to provide care for your mother, your sister. The volunteer based team comes from 5 countries 14 states, 18 hospitals. They have about 12 hours to countdown before it all begins.

Tomorrow, we are one team.

In 2012, Regine, an orphan  came to the attention of Team Heart screening team. Shy, with a sweet and trusting smile and speaking almost no English, she could not lie flat to be examined by echocardiogram due to severe heart failure. Gasping for breath, she appeared to be in an acute phase of heart failure. Through interpreters she stressed she wanted to live, BUT she wanted someday to marry and have a chiild. Team Heart is committed to addressingand respecting Rwandan cultural norms and is well aware of the powerful value that marriage and bearing children places on women of childbearing years even those with chronic illness. For many it could lead to  being ostracized from family, and being unable to support themselves. The future is sometimes bleak for this group of young women with rheumatic heart disease. 

Regine accepted a bio-prosthetic valve buying her time to create this family of her hopes and dreams. Central to the plan was a  group of friends surrounding her, including a young man Vincent who unlike some men in the same situation also due to cultural pressure, would never leave her side. It was an incredible love story based in poverty but devotion. He brought her juice to sip as she recovered from surgery, helped carry her belongings to preserve her strength and was her personal advocate.  She did well with surgery and Regine and Vincent saved their money even though both were unemployed and lacking advanced education had to create day work to survive. A spectacular wedding followed, created by their friends. A baby son soon arrived, the light of their lives! 

But Bio-prosthetic valves in Rwanda do not last more than 6 or so years and in February as she underwent her annual evaluation it was clear, she did not have long to live with out surgery number 2. Because of the annual Team Heart travel, we had  been asked not to do re-do's....to give more patients  a chance--if  redo ties up the blood bank of the ICU beds, surgery must pause. The blood bank situtation was improving greatly, in Rwanda since we began, but still demand for potential bleeding at re-do was certainly frightening to the surgical team. She was evaluted to send out of country for surgery to India and althought the Ministry of Health  can only select few for this opportunity, she was amazingly governmental sponsored. Many thanks to the local Team Heart staff who stood by her and pushed for advocacy, making all  arrangements for passport and travel and preparing her for what they anticipate would happen during travel and surgery. The patient Association, RCPN, TH founded in 2009 with patients, met to lend support and local fundraising.

Living on $50 a month the young family leave nothing left to contribute.  The money donated through Global Giving has contributed to making it possible for airfare and hotel costs.  On October 16, Regine and Vincent stepped on an airplane headed to India for her redo surgery! Thanks to all the donors who contributed the $5000 needed to send her possible.  Now we wait to see when she will recover enough from the ardurous flight to go the OR for a new valve...

Regine is just one patient story of the many in Rwanda needing cardiac surgery as a result of too late diagnosed and untreated rheumatic heart disease. It is estimated there are upwards of 35,000 who are yet undiagnosed who will meet the same heart failure fate. A cardiac center in country will provide a place for diagnosis by local experts, expert surgical care, and education to address the growing cardiac care needs of the country. 

Links:

Patient after surgery receiving micro-loan
Patient after surgery receiving micro-loan

Team Heart is planning our 2018 surgical trip to coincide with a meeting to include interested International Partners to  coordinate care, equipment and supply delivery. All partners will commit resources, both human, and capital to improve the site to facilitate improved care. Team Heart is one of 5 teams who have provided in country services in the past, but only partners from Belgium and Team Heart currently remain committed. A highlight to coordinate education for the local team to increase skills and provide post-operative care has long been a primary goal and is close to realization.

A patient reunion, with heart healthy lunch introducing the plant Chaya, which is a green vegetable low in Vitamin K, important to those on lifelong blood thinners will be shared with all attendees. An education seminar to stress importance of check-ups and heart healthy tips will be held on February 9, 2019. This will be co-hosted by the Rwanda Cardiac Patient Network and King Faisal hospital on the outside grounds of the hospital. 

Over the past few months, the local Team Heart office is promoting follow up communication to improve survival of patients having undergone surgery in the 2018 trip. Using SMS and algorithms, Team Heart will communicate using the language of choice to answer any questions, promote healthy lifestyles and identify barriers to receiving post-operative care. Messages can be received by the office to alert of lack of  medication or treatment shortages at local centers. 

In addition, the local team is recruiting volunteers to assist with the World Heart Day Events, September 29, 2018. The focus to engage individual to take charge of their own heart health and identify ways they can do so in partnership with the World Heart Federation. 

Team Heart remains committed to improving the facilities where care is delivered in partership with the Rwanda Ministry of Health and efforts to engage other partners to move forward will be the topic for a seminar in Kigali. 

Links:

Dear Friends,

In this past quarter we completed our eleventh surgical trip, impacting lives in a positive way. At this moment we would like to provide you with an update on a few items that the team has been focusing on in the last months.

We identified a need to support patients post-operatively so they could communicate their status to medical staff and avoid delays and inaccuracies. To facilitate this, a cellphone SMS-based system is being designed which would be a low cost and reliable way to gather patient information. Patients can be flagged as needing follow-up. For example, when a local pharmacy does not supply their needed medication, a team representative would be notified and correct action can be taken. Trials are being planned and this would integrate into our strategy for supporting cardiac surgery patients in Rwanda.

Team Heart is helping out in non-medical areas as well. There are patients which are unfortunately homeless due to many reasons and we are helping pay their school fees. Our commitment goes beyond medical care. Our goal is to ensure that these patients return to their communities and become productive members of society.

We also continue to provide long-term support to our past patients. It's always exicting to seem them yearly when they come for the patient reunion. Regine, one of our long-standing patients, has recently been identified as needing her bio-prosthetic valve replaced. The team is supporting her trip to India for the surgery. It will be amazing one day when this type of follow-up can be done in-country. This is one of the many reasons we are hoping to build a cardiac hospital in Rwanda!

Thank you for your continued support and dedication in this shared vision.

If you have any questions, please don't hesitate to contact me at liliabacu@yahoo.com

Regards,
Lilia

 

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Organization Information

TeamHeart, Inc.

Location: Waban, MA - USA
Website:
Facebook: Facebook Page
Twitter: @TeamHeartRwanda
Project Leader:
Lilia Bacu
Waban, MA United States
$24,207 raised of $25,000 goal
 
185 donations
$793 to go
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