February 8-We miss Julie already!

Our first team member headed home yesterday and we already feel the emptiness in the space she leaves behind! Julie Carragher, a nurse practitioner from Harvard Vanguard in Boston. It was Julie's first visit to Rwanda and she too has fallen in love with the experience. Julie joined the screening team of veteran cardiologists, Patricia Come, MD (photographed with Julie), Jeanne DeCara, MD and  veteran sonographers Marilyn Riley and David Adams. A team of incredible experience! Julie jumped in looking fresh as a daisy every moment and with a smile on her face the entire time.  Her willingness to track lab values, tick off needed procedures and advocate for the patients for rapid process through the system. She quickly found Alphonsine in admissions to help  speed up the front office process, and made friends with dental for rapid clearance.  Julie was so inclusive  and immediately became found Cardiology house officer Vincent, who helped to facilitate the care needed.

Julie left Kigali yesterday with beautiful sunshine and moderate temperatures in low 80's. She returns home to a snow storm.

As i worked in the ICU last night i watched our first female patient brighten and come to life as her tubes were removed and she was told she would move to the ward today.   She smiled and i understood from the many years i have worked with Team Heart that this means " she has made it".   She will survive.   As much as we try to provide privacy for our patients in the icu it is a open area and lots of the drama surrounding recovering a sick patient.   Today she will go to the ward and the magic will start...she will eat well and walk,  play soccer.   She will grow strong and now have the chance to live a long life.   I was told this evening she may want to be a nurse...kind of cool to think her experience will make her more empathetic and kind to other sick patients.   I will remember this one....

Meeting the Patients

Yesterday, as day one of surgery got underway at King Faisal Hospital, we had the opportunity to meet with two young women who were scheduled to undergo valve replacements this week. The first patient was scheduled for yesterday afternoon, and the second –though originally slotted for this morning—has been pushed back due to a bad cough.

The first things I notice about Patient 2 are her arms. They are so incredibly thin from wrist to shoulder that it’s hard to imagine even a bone fitting in there.  They are no more than 2” in diameter, and as a nurse takes her bicep to check the patient’s blood pressure, her fingers overlap. The nurses tell me that she is weighing in at 36.5 kilograms. That’s just 80 pounds.

Like many of the patients we see, this young woman does not speak English; she also doesn’t smile. It seems clear that she’s frightened, as most of the patients are, but her eyes are wide open and inquisitive. She’s just stunning.  I ask if I can take her photograph, and the nurse from King Faisal Hospital translates. “No problem”, she responds, but still no smile. I’ve been told that the Rwandese like to see the pictures taken of them, so as I snap the camera, I share the photos with the patient. I wonder if she’ll like them and find myself hoping that she does.  She is hugely captivating.  Her gaze is so frank, not the least bit self-conscious, and she stares at the camera with a depth that feels very personal.  I am hoping that she likes seeing herself on screen; I really love taking her picture.  It’s not surprising that she doesn’t offer much of a reaction—but she keeps looking.  I’m curious to see if she’ll open up once the surgery is behind her.

On the other side of the room, Patient #2 is a few years older and far more animated.  When I first enter the room with my camera, she can’t keep her eyes off of it. I have to leave so that she can concentrate on the important conversation one of the team members is trying to have with her about the surgery scheduled for that afternoon.

This patient is just 21-years old, and with the mechanical valve that the doctors want to implant, she will be on a blood thinning medication for life. Patient 2 must make a decision: the valve will save her life, but leave her unable to bear children. For a Rwandese woman, that is an incredibly difficult decision—this is a culture that places an immeasurable importance on a woman’s fertility and childbearing capacity. To give that up for the durability of a mechanical valve will negate her worth in the eyes of her culture. How does any 21-year old woman make a decision like that, and how does a Rwandese woman choose to give up something that will define her within her culture? She must decide, is choosing life worth what she will be giving up? Happily, this patient thought so. It’s a hard decision to both witness and understand, but, of course, a much harder decision to have to make.  It is a major factor to consider for many of Team Heart’s prospective patients.

When I met Patient 2 for the first time, the intricacies of the surgery—and the childbearing repercussions—have just been explained to her. We wonder if she really understands. She is fascinated by my camera, and even though I want to catch her in candid moments, she can’t stop looking directly into the lens. She wants to see the pictures I’ve taken and expects Polaroids. I try to explain that the pictures are digital and show her the mechanics of the camera (why I thought that might clarify the situation is hard to say). We don’t share a common language, so I pull out the memory card to try to explain. I think she understands, but is more concerned with having her picture taken than how the whole thing works.  I don’t think it’s vanity…I think she is self-conscious about being sick, and vulnerable.

She, too, is beautiful. The Rwandese that I have met so far have amazing deeply dark skin, big eyes, and gorgeous bone structure.  Even these patients, sick and scared and uncomfortable, have a natural beauty that is striking.   It’s a photographer’s dream! This young woman is embarrassed when she sees her own picture, but keeps posing—so I know she likes it. She, too, loves to just gaze at the camera, but loosens up as the day goes on. Jean Paul, a former patient and ambassador to Team Heart, shows her his own scar, listens to her questions, reassures her, and most importantly, makes her laugh.  It’s a beautiful thing to witness.  Her caregiver—maybe her mother? —is sitting by the bedside and looks on the whole scene without a word. I wonder if she’s nervous, or disapproving.

Patient 2 got out of surgery late last night, and thankfully, all is well. When I saw her this morning, clutching tightly to her Team Heart pillow (a gift that all the patients receive after surgery), she looked tired but relieved. One of the team members stops by her bed and explains to me that this was her first ever patient. The young woman smiles through her oxygen tubes, and it’s a special moment to witness between the two of them. The patient is forever changed, but so is that doctor.

Patient #1 is still awaiting surgery, but I saw her again this afternoon and hardly recognized her—she was grinning!

                                         Patient #1

-Mackenzie Craig

Update from Bruce Leavitt, MD February 5, 2013

February 5,

Today is my third full day in beautiful Rwanda.  Here is a little background as to what has transpired since arrival.  After two long flights from North America, I landed in Rwanda on Saturday evening.  I never really saw the light of day on Saturday, and Sunday passed mostly in a  haze of jet lag. Team Heart met in the early afternoon to review all of the cases that had been seen by the awesome pre-visit evaluation team.  We prioritized the patients for the week which was a difficult job.  Monday the fourth of February was our first operative day.  The first case was a 39-year old man who received a new mechanical aortic valve by Drs. Oakes and Bolman.  The second was a 21-year old female who received a mechanical mitral valve for her rheumatic mitral stenosis by Drs. Matthew and Bolman.  Both cases went very well, especially considering that it was the first operative day; the kinks were small and worked out very smoothly.  

I am truly amazed at the teamwork, dedication, knowledge and skill of everyone on Team Heart.  I guess I now know why "Team" is the leading word for our organization.  Today (Tuesday, February 5th) we started with my first cardiac surgery case in Africa.  Our patient was a 19-year old young man with severe mitral insufficiency and tricuspid insufficiency, again from rheumatic disease.  His case was difficult because of the greatly enlarged size of his heart.  He received a mechanical mitral valve and a tricuspid valve repair with a ring.  He did have one of the largest hearts I have ever operated on, especially for such a young man.  After today we will have finished 4 cases with 12 to go.  More to come.

Bruce Leavitt, MD

Mackenzie arrived.....February 4, 2013

This morning began bright and early at King Faisal Hospital in Kigali for many members of team. Today, surgery begins! The patients have been screened, evaluated, and carefully selected.  Though there are still decisions to be made and some factors to consider for individual patients, the team has set the surgery schedule for the week and patients have begun to filter into the hospital. It’s a day of hazy sunshine with a perfect breeze, the kind that feels like the first day of summer back home, and everyone is smiling.   Jetlagged, exhausted, but smiling—there is a palpable current of pride and purpose in the room where Team Heart has taken over.

The hospital itself is surrounded by some incredible views of Rwanda. There is an open air walkway all along the outside of each floor of the hospital; hazy mountains seem hundreds of miles away, and local men and women farm the land, for potato crops we think, just beyond the hospital property. In between, there is a fascinating mix of sights.  Modest homes with corrugated metal roofs, a sweeping golf course, government buildings, a palatial private residence, and a lake are just a handful of things that fill the countryside. 

Inside the ICU where the team has set up shop, there is a stillness and real sense of anticipation as we await the first patient.  The first surgery of the trip has just finished, and at any moment our first patient will be wheeled in for post op care.  The surgeons come in first, and we’re told that the surgery went well.  Everyone seems relieved, but anxious to begin work! A calm before the storm, they know. This will be the first  patient of 16 over the next week or two, and this ICU room will become increasingly more hectic.

The first patient is wheeled through the door, and Team Heart is all smiles.  The room is quite suddenly bustling and one of the talented surgeons says “First one down…It means everything is working. More or less!” We all get a kick out of the “more or less”.

The mobility here is amazing.  The volunteers have set up what is essentially a portable post op unit, and the team tells me that much of what I see in that ICU room has been brought and donated by Team Heart over the years.  Suitcases and backpacks are stuffed under every surface in the room, a pharmacy is set up on two folding tables set in an “L” shape, and about 20 people have converged around the patient to get him connected to all the machines and monitored. 

The patient is stable, and the anesthesiologist reports on what happened in the operating room.  What we’re seeing is part of a program called ‘PAUSE’, and it is intended to ensure that everyone involved with the patient care is on the same page.  It’s meant to encourage open dialogue between team members and ensure that no detail is overlooked; there’s a real sense of unity and a common goal of success as everyone gathers around to discuss this surgery and the plan of care going forward.

One down, 15 to go!  I met 2 more patients on Team heart’s list today—stay tuned!

Pallets make it to Kigali in record time!

Day 3, February 3, 2013—Pallets have arrived-O Happy Day!

Wireless in the hotel allows for emails which might arrive after we go to bed given the 7 hours EST difference. At 2:30 when we are awake and do not want to be, an email from Carol Phillips, our American River shipping coordinator alerts us the pallets have been on the ground in Kigali for 48 hours. And the transit was in 5 short days.What a wonderful job. We originally planned for 3 pallets and reserved space, but when the shipment direct to Rwanda never materialized, we cannot run the risk. We pack more supplies and with now 5 pallets, we must go on “space available”.  We plaster the outside with notes of Life saving cardiac surgery for Rwanda and a note to pass as quickly as possible.  It seemed to work.  When I notify Vedaste he is ready!! He has already filed for the permit from the MoH and picked it up.  He tells me the goods will be delivered to the hospital by this afternoon!!! All 131 boxes, and near 3000 pounds. Motrin will be passed out all around in anticipation.

David Adams and Ceeya will join Dr. Emmanuel  Kamanzi and Dr. Joseph Mucumbitisi for the follow up of the 17 patients identified in September 2010 to be potentially positive for RHD.  The screening begins at 9 and the children seem to be happy to be missing school. As they line up, they seem pretty laid back except for one little guy that seems to be rather wishing he was in school.  A highlight was a lovely little lady we identified with an ASD in that September 2010 screening. She had surgery by the Belgian team the following month!

An ASD, opening between the top two chambers, or atria often go un-noticed in an otherwise healthy child. Often the symptoms of an ASD do not appear until adulthood.  So we like to think we saved her a life-time of deteriorating health!

First days in Kigali!

So it begins….

Screening begins at CHUK. (University Hospital of Kigali City) with long time referring physician, Dr. Kagame. He has arranged a wonderful clinic full of the patients we are most happy to see –those who need us and have no other chance. The patients are quiet and wait their turn, some up by dawn and then having traveled 4 hours by bus. Waiting 4-6 hours is more the normal routine they expect and are resigned to. Both cardiologists, Dr. Pat Come, Harvard Vanguard, Boston and Jeanne DeCara, University of Chicago, have been through the routine before.  Pat is in her 5^th year and Jeanne is returning for her second.  Both sonographers are return visitors. David Adams , Duke, Durham NC for his second visit, And Marilyn Riley, Boston, Beth Israel Deaconess for her 3^rd visit.  New to our team is Julie Carragher, NP, MSN, from Braintree MA.  Everyone jumps in an begins.

We immediately see several we can help and diagnosis our surgeons will like. But all too soon we see some who we will not be able to offer a future.  Several, have such hope on their faces.

Rwanda has Universal Health Care, Mutuelle. But to even access  Mutuelle, the entry to the health care system you have to be healthy enough to travel for papers and have cash to pay even the small amount. Even to come see us, they must be able to pay the 10% co-pay. A physician assures us defensively it is a modest amount when I ask how someone so ill is supposed to be able to have the amount to register. Rwanda is quick to say “there is no such thing as free care, someone must pay”.  But for a young 18 year old who developed rheumatic fever in the first place because she did not have money to go to a physician for penicillin at age 10, now she must find several hundred US dollars if cardiac surgery is to be done.  As we leave, she sobs quietly wiping away tears. She has been told she needs cardiac surgery, and three heart valves will be needed-- and she has no money for the return trip…..the equivalent of $6.00.  It makes us all concerned as there are few listening who can change the system to make easier.  We know they say the system works. We just want it to work faster to help this young mom.

That sight follows us home, as we  muster the energy to go  for dinnerl and yes we are all feeling guilty for eating a meal. We discuss the patients we have seen, the wonderful physicians and nurses and how it must feel to them to want to do much, but do not have the equipment.  

We arrive in Kigali with familiar sights. Missing is the familiar smell which made each of us look at each other knowingly and say, we are here. In the past, the pleasant smell of charcoal always welcome us. Now with new initiatives to have safer air quality with distribution of cooking stoves, that is missing.  I am hoping the smell will not be replaced by cigarette smoke, now so popular with those bringing economic growth with construction. Even though our hotel is non smoking, the tourist ignore and smoke pours from the social spaces.

Day 2 finished in a blur.  Anxiously, we are awaiting the shipment arrival of our five pallets, known as skids in the shipping world.  As they leave US air control, we are unable to track as they criss-cross Europe. A near sleepless night for several of us, supplies figure heavy on our mind. The hospital is very low in disposables and although we try to conserve our resources, cardiac surgery requires more than most other surgery and you really cannot reuse or recycle as much as you wish.

While the team is downstairs in a very busy clinic at King Faisal, I have the opportunity to catch up on email for various open-ended arrangements. The to-do list is very long for each of us.  We love that the password works at the hospital and gives  a sense of belonging.  The walkway outside ICU makes a perfect makeshift office as the breeze is gentle, the goats baaing and there is a choir down below practicing for Sunday. It is almost calming as I log on AGAIN to see where skids 1-5 are at the moment. I know there is a holiday in Rwanda on Friday and they MUST clear customs before we can then to begin set up. If we are required to “clear second customs” on Friday, everyone will be disappointed with us for having to work on holiday.

A highlight of the day is catching up with Vianney, the HRH nurse at KFH ER who has a background in cardiac surgical care, Rwandese and now living in Rwanda.  He is accompanied by Emmanuel the Kigali perfusionist now for  2 years . Emmanuel and Vianney speak the same language as we do. They know hard decisions are in the works with patient selection. And they too, share the visions we have for the future. 

Meanwhile Vedaste, the chief procurement person at King Faisal who has been chasing an order for  over 8 months.  He takes it seriously and feels very bad as he sees anxiety climbing. He is working hard to provide solutions.

The patient screening day 2 is going well.  We have two rooms and Dr. Nathan has prepared well for the visit. He has several patients who have been not selected by us or the past teams and have been scheduled for evaluation as he feels they are ready--And they seem to be candidates. There are probably 5 who will require surgery, but can we do all 5? Our list is already near full and we have two more days of screening to go.  Hard choices are ahead as we know not everyone will be able to make it on the list.

As we walk a patient though the system for lab and radiology studies, I watch Noella immediately illustrate the compassion and care which will make her a great physician some day. Although she is serving as our translator, she sees what needs to be done and takes care of it.  Immediately playing the patient advocate, she wins everyone’s heart.

Although there are a few less patients than yesterday, we are again late leaving. We decide the only answer for dinner is pizza at the top of the hill, Café Havanna, as we walk by. The cardiologists still must upload the H & P and send to the surgeons…..still hours more work ahead.

Arriving to hotel we discover emails from our home-based team. Julie our executive director in Boston, has made contact with all who will carry a second case. She will arrange for the iStat cartridges which will be critical and can only be packed last minute.  And Steve,--wonderful Steven Senat, is still juggling supplies with Vedaste and notices we need the portable hematocrit machine to travel with perfusion.