Tuesday, April 04, 2006

Dukens and Mirterlande: Lessons from Two New Heart Patients

Pierre brought his friend Dukens Desir to see John this morning. Dukens is 16. He is so slight, he makes Frandy, another skinny HH patient, look robust. Dukens’ upper arms are as thin as his forearms.

This young man is another victim of rheumatic fever. “He has as bad of a heart as I’ve ever heard,” said John, removing his stethoscope from Dukens’ chest. Dukens sits on the edge of the bed, his shirt off. “Do you see how the left side of his chest is bigger?” asks John. “His heart has gotten so big, it is pushing out his chest.” Holding his finger low on the left side of Dukens’ chest, slightly higher than belly button level, John says, “See my finger pulsate? The heart isn’t supposed to be beating down here.” As John has said many times, “A big heart is a bad heart.” Dukens has two bad valves, which cause his heart to overwork and stretch out. If his valves were fixed, though, he could be a new boy.

John introduces me to Dukens, who gives me a smile that contains all the sweetness and gentleness in the world. I am hooked. We have to help this boy even though Dukens’ situation lacks all the conditions that I think are ideal for HH patients: he’s a teenager and they don’t want to return to Haiti after surgery plus they can have behavior problems. He has a valve problem not a congenital problem. This means that if his valves were replaced with artificial ones, he would need to be on blood thinners for the rest of his life. We are finding that even when we supply the medicine, Haitians compliance with taking it is poor, to say nothing of periodically getting their blood coagulation function checked. Poverty makes everything difficult. This leads us to want to find adoptive American homes for these kids, another huge, hassle producing process. In other words, Dukens is not a small child with a congenital problem that can be completely fixed with surgery.

Yet, despite all this, I want to find help for Dukens. His eyes are bright and I think of all that he could do with his life. “Should we get an echo on him?” I ask John. “We have six more just like him on the list with no hospital,” he responds, serving as the voice of reason.

Rheumatic fever is a scourge upon the hearts of young people in developing countries. The disease develops from untreated strep throat. Strep throat can be cured with a few pennies of antibiotics, which these kids don’t get. I’ve looked on line for rheumatic fever prevention programs and have discovered that to prevent and eliminate this disease, the overall health care of the citizens need to be improved. People need regular access to doctors and medicines. Until that happens, rheumatic fever will continue to kill people, as it did in the United States before the advent of antibiotics.

Pierre gives us a ride to the clinic. On the way, John explains that we don’t have a hospital for Dukens. “I will hope that you find a hospital,” says Pierre. “Dukens is suffering.” Yes, John agrees, Dukens has been sick for a long time and suffers a lot. “It is very hard to watch him suffer,” continues Pierre. So hard, indeed, even for me, who has known Dukens for all of ten minutes. I am trying to staunch the tears.

Dukens and his father get out of the van. I turn to shake hands with him. He beams at me again. It is hard to know that smile will soon be extinguished from this world.

* * * * * * * * * * * * * *

This same morning, shortly after I finish writing the above, I notice a man standing in front of me where I sit on a ledge in a hallway between two waiting areas of the clinic. I look up and the man smiles and hands me a business card with John’s name written on the back. I flip the card over and see that it’s from Dr. Richard Pilie, the cardiologist in PAP who does echocardiograms of HH patients.

A few minutes later, I escort this man, a woman, and a teenage girl into John’s exam room. The woman is carrying a written echo report and the cassette that contains the actual echo video of the teenager. As usual, John wants to do a physical exam of the girl before he reads the echo report.

The girl’s name is Mirterlande Trompe. The two people accompanying her are her uncle and her sister. Her parents are in the province (country) near Hopital Albert Schweitzer, where John used to work. She is 14-years-old and looks healthy, or at least a lot healthier than Dukens. John introduces her to me, and she glances quickly in my direction. She’s shy and nervous, so making a connection is more difficult.

John moves the scope all over Mirterlande’s chest. As he has her stand to listen through her back, he says, “Her heart is large.” After a couple of minutes, he has her sit down. “It’s her mitral valve,” he says. It’s not working and blood is flowing in the wrong direction. “Rheumatic?” I ask. He nods.

I hand him the report, which confirms John’s diagnosis. He reads through Dr. Pilie’s surprisingly lucid handwriting. “He has her on all the big gun heart medicines, but not penicillin,” John says wonderingly. People who have had rheumatic fever should take penicillin everyday for the rest of their lives to prevent a reoccurrence. Jackson likely had more than one bout of rheumatic fever. John tells her uncle to stop by our place and we will give them some penicillin.

At the end of the exam, I catch Mirterlande’s eye and smile. She smiles back a little. She is lovely.

Here is the lesson: I don’t have as much of a feeling for Mirterlande as I do for Dukens, who has more advanced disease and two bad valves. I simply have more of a response to him. My thought about her situation is, “Not another valve.” It’s an unattractive human reaction. How I feel doesn’t change the facts: Dukens and Mirterlande both deserve good medical care and surgery. We shouldn’t rank people based on how we feel about them.

As human beings, we are inclined to want to help those to whom we have a closer attachment. We ought to realize the urgency of everyone having good health care, even if, especially if, they are poor people whom we don’t know or have never seen. This is God’s way, to strive for, and not our human way, to overcome.

The coincidence of seeing these two patients within an hour of each other makes me think that God is trying to send me this message about my desire to help Dukens but to label Mirterlande as a troublesome valve case. I become certain when John tells me the Creole meaning of her last name, Trompe: to fool.

No comments: