Wednesday, February 6, 2013

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

1 comment:

  1. Beautiful post, Mack! Thank you so much for it, it's hard not to be there and it helps when you document so succintly what it's like to be there, both in words and pictures. Looking forward to more posts when you can!

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