December 2006

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Chronic rejection is not well understood, even by lung transplant patients. But I recently came across a good explanation and I’ve reproduced it here. It’s an article titled What is Chronic Rejection? from the most recent newsletter sent out by my lung transplant clinic at the University of Colorado:

The diagnosis of chronic rejection can be made in two ways: a lung tissue biopsy or changes in breathing tests (also called pulmonary function tests or spirometry). Chronic rejection in a lung tissue biopsy is defined by scarring or fibrosis in the small airways. This finding is a “histological diagnosis” made by looking at the tissue under a microscope. The scarring will obliterate the airways (also called bronchioles) and thus the process is called obliterans bronchiolitis or bronchiolitis obliterans. Generally the biopsies obtained during a bronchoscopy are too small to make a diagnosis of obliterans bronchiolitis. A larger lung biopsy can be done in the operating room, but this requires intubation, general anesthesia and a hospital stay so it is not routinely done.

Because of the complications and risks of an operating room lung biopsy, patients and physicians have sought a way to define chronic rejection by breathing tests. As the small airways become scarred and fibrotic with chronic rejection, there is a decline in breathing tests. This decline is called BOS.

BOS reflects a clinical diagnosis of chronic rejection. BOS is graded by severity of decline in breathing test numbers. Specifically, we look at the forced expiratory volume in one second or FEV1. After transplant, the FEV1 may be low but will gradually increase over time (months to even years after transplant). The highest FEV1 after transplant becomes that patient’s baseline FEV1. Future FEV1 measurements are compared to this baseline. Progressive decline in the ratio of the current FEV1 to the baseline FEV1 defines the stages of BOS.

It is important to note that many factors can decrease the FEV1 besides chronic rejection. Most notably, infection and acute rejection can decrease the FEV1. However, in these situations, the FEV1 should increase with treatment of the infection or acute rejection. Decline in the FEV1 that is permanent and irreversible defines BOS.

A few notes. First, BOS stands for Bronchiolitis Obliterans Syndrome. Second, I’ve never had the operating room lung biopsy they mention but I’ve had many bronchoscopies. The bronchoscopy is a very common procedure for lung transplant patients. They sedate you and then send a scope down into your lungs, sometimes snipping a little biopsy while down there. The procedure is used to check the lungs for infection and rejection. Third, when I talk about my lung capacity I’m talking about my FEV1.

Denver is plowing up one of its all-time snowiest blizzards. I remember the last one well. It was 2003 and I was living in a condo in Congress Park. In the aftermath, hardly anyone was out driving, especially on the sidestreets, but a lot of people were out walking or skiing through the drifts. I walked with my then-girlfriend up 12th Avenue to the local coffee shop for a warm-ya-up and then we zig-zagged over to Congress Park. That made for some tough trudging as we had to bushwhack our own path through the snow but we made it across the park and up the sledding hill, which was getting a lot of use. Deciding to make that the apogee of our neighborhood orbit, we dodged a car or two as we marched down Josephine (or was it York, I always mix those up) and then down the middle of 13th to my condo.

It is a fun and rare feeling, a city shut down by snow. The social order is suspended but not in a dangerous way. Well, for some it is dangerous–the stranded, shut-ins, the homeless. But for most people it is like Senior Ditch Day in high school. Or just a simple schools-are-closed snow day for adults. Unfortunately, I won’t be able to explore the snowdrifts this time around. Here are a few pics of the Iverson Blizzard of 2006:

Snowy Yard
Here comes the sun! The sun arrives at the tail end of the blizzard. That’s a rosebush in the right foreground. My driveway is a few yards past the bush and under two feet of snow.

More Snowy Yard
The alley in the center of this photo makes a good sledding hill and I’ve seen a few kids testing it out over the last couple days.

Snowy Backyward
In this backyard shot, how about that ray of light illuminating the bush on the upper left? It makes me think something Biblical is about to go down. Let’s just say I’m going to be on the lookout for a young homeless couple speaking Aramaic.

I just read a good memoir called The Glass Castle by Jeannette Walls. She lived a childhood of extreme neglect. She wasn’t abused by her parents but they did a piss-poor job of providing the basics to their children, namely food and shelter. Her father was frequently drunk and her mom was self-focused and immature. At one point, they were living in a rickety West Virginia house with no running water, basically no roof, no heat and they threw their garbage in a hole in the backyard. The kids scrounged for food in the trash cans at school. Jeannette and her three siblings usually went to bed hungry and cold. When her mom wanted a job, she easily got one. She just usually didn’t want one. When her dad wanted a job, he easily got one but he usually got fired or quit before too long, citing problems with authority.

On the bright side, Jeannette and her siblings did learn a lot about self-sufficiency — but there has to be a better way. One interesting aspect of the book is that the parents do have redeeming qualities and are rarely presented as villainous, just very flawed. By the end of the book, Jeanette is attending Barnard College in New York City mostly on scholarship and her parents have moved to the city to be close to her and her siblings. All the kids have homes. The parents are homeless and become squatters. And then there is this exchange with one of her professors which I love on many levels: public policy debate meets human nature; self-righteous professor ends up looking stupid (to the reader at least); and, the danger of assumption…

She was one of my favorite teachers, a tiny dark passionate woman with circles under her eyes who taught political science. One day Professor Fuchs asked if homelessness was the result of drug abuse and misguided entitlement programs, as the conservatives claimed, or did it occur, as the liberals argued, because of cuts in social-service programs and the failure to create economic opportunity for the poor? Professor Fuchs called on me.

I hesitated. “Sometimes, I think, it’s neither.”

“Can you explain yourself?”

“I think maybe sometimes people get the lives they want.”

“Are you saying homeless people want to live on the street?” Professor Fuchs asked. “Are you saying they don’t want warm beds and roofs over their heads?”

“Not exactly,” I said. I was fumbling for words. “They do. But if some of the them were willing to work hard and make compromises, they might not have ideal lives, but they could make ends meet.”

Professor Fuchs walked around the from behind her lectern. “What do you know about the lives of the underprivileged?” she asked. She was practically trembling with agitation. “What do you know about the hardships and obstacles that the underclass faces?”

The other students were staring at me.

“You have a point,” I said.

Jeannette kept quiet because she did not want her classmates to know about her past, or the fact that her parents were homeless. She was also tired of trying to defend their unusual lifestyle. The part that resonates with me after reading this family’s saga is, “people get the lives they want.” Our lives are the products of our own decisions. Not exactly a popular notion these days when so many people embrace and exploit victim status.

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