<img src="http://www.joplinglobeonline.com/images/zope/extra.gif" border=0>Photographer documents struggle with cystic fibrosis<font color="#ff0000"> w/ slide show and link to National Transplant Assistance Fund page</font>

By Scott Meeker

smeeker@joplinglobe.com

ST. LOUIS — After administering his own evening antibiotic treatment — delivered through an IV port in his chest — Curtis Almeter sets up his laptop computer on one of the room’s two twin beds.

Loading up a photo management program, he kneels next to the bed and begins scanning through some of his photography. There are a few landscapes, but the emphasis of his work is heavy on portraiture.

An Anderson native and recent Crowder College graduate, Almeter has taken numerous photos of models, his camera capturing their natural beauty and also providing snapshots of his own creativity.

There’s a black-and-white shot of a woman in a trench coat, a picture that radiates a film noir vibe. Another emphasizes the face of his subject, but the atmospheric hallway of the Crescent Hotel in Eureka Springs, Ark., stretching behind her is just as captivating.

There is the ever-present hum of the oxygen converter that is feeding air through the tubing situated under his nose, but it seems to fade into the background as Almeter talks about his passion for photography. He loves the medium’s ability to capture emotion and tell a captivating story, and he can’t help but smile as he talks about all of the elements that can come into play when taking a good photo — such as lighting, shadows and composition.

All of those things must be just right as the camera’s shutter opens and closes, forever capturing a moment in time as an image that can tell a powerful story.

“It’s all about being in the right place at the right time,” Almeter says. “A little bit of luck is involved.”

A rapid decline

It’s such a simple process, breathing — a gentle inhalation of air, followed by an exhalation. It’s so natural and simple, in fact, that most people never stop to consider the mechanics behind it.

Having lived all 26 of his years with cystic fibrosis, Almeter is all too aware of how his lungs function. Especially now, as the organs are failing him.

“It’s like breathing through a straw,” he says. “Imagine running until you’re out of breath. When you can finally stop to catch your breath, you can only take half breaths.

“My chest feels tight, and it wears you out easily. When one organ is failing, it pulls on the others ... a chain reaction kind of thing.”

A genetic disease — one that also affects his 18-year-old brother, Tim — cystic fibrosis causes the airways to be clogged by thick mucus buildups.

“Where a normal person would be able to clear it out when they get sick, mine stays in there and makes it worse,” Almeter says. “The repeated bouts of infection causes scar tissue to build up in the lungs.”

With his lungs failing him, doctors recently told him that a double lung transplant is his only chance at living a normal and healthy life.

To be honest, he says, not many people were aware that he had been living with the disease all his life.

Almeter was diagnosed with cystic fibrosis as a newborn, at a time when screenings were just becoming commonplace and the life expectancy for someone with the disease was 19 years.

He was immediately started on digestive enzymes and other treatments to keep the fibrosis at bay. He started doing breathing treatments at around age 12.

“At that age, I couldn’t notice a difference in lung function,” he says. “I wasn’t short of breath. It wasn’t until high school that I felt it. I wasn’t able to play basketball anymore.”

Within the past year, his health has declined rapidly, and it wasn’t so easy to keep the disease a secret any longer. He has had multiple hospital stays this year, including once for a collapsed lung, and doctors recommended that he go on oxygen.

“My main reason for not telling people is that I didn’t want to be pitied or to be treated any different,” he says. “But I had no choice. It’s kind of hard to hide an oxygen tank.”

Picture perfect

Almeter’s love of photography began with a job he took at a photo lab in Kansas City after graduating from high school in 2002.

He spent his days developing film and looking at the pictures, and discovering that he had an interest in the medium.

“I could see the difference between good and bad pictures, and I eventually bought a camera,” he says. “About six months after that, I got a job shooting for a newspaper called the Cass County Conservative as a stringer.

“That was my favorite job. It was awesome. That’s when I knew that this is what I wanted to do.”

As he honed his skills with a camera, he decided to move back to the area and study journalism at Crowder College.

Almeter was an award-winning photographer and photo editor for the Crowder Sentry, and he also shot photos as a stringer for The Joplin Globe.

After graduating from Crowder in the spring, he had planned to continue his studies at Missouri Southern State University. Those plans were put on hold as his health began to take a turn for the worse.

Waiting for the call

In the kitchen of Barnes Lodge, Almeter and his mother, Karen, have just sat down for dinner.

The lodge serves as a residence for patients at Barnes Jewish Hospital in St. Louis, one of the leading hospitals for lung transplant surgery.

Last week, Almeter went active on the transplant list. He and his mother are staying at Barnes Lodge and will soon move to a duplex near the hospital. The call informing him that a donor has been found could come at any time. Today, perhaps, or maybe a year from now.

On a TV near where the mother and son sit, U.S. Sen. Pat Roberts of Kansas is talking about his thoughts on the health care reform bill.

Almeter qualifies for Medicare and Medicaid, which will cover much of the transplant cost.

“We didn’t know that initially,” says Karen Almeter. “It was good news ... one less thing to stress over.”

But, there is the cost for staying in St. Louis for what could be an extended period of time. There also are costs for transportation, food and medications, and other expenses that have quickly begun to mount up.

A social worker recently suggested that the family seek ways to raise money for Curtis Almeter.

“I found the National Transplant Assistance Fund on the Internet,” says Karen Almeter. “It allows for tax-deductible donations and gives credibility to the fundraising.”

Established in 1983, the organization provides fundraising guidance for patients and their families, and works to raise awareness about the need for organ and tissue donation.

About 1,500 active campaigns are under way on behalf of patients needing transplants or who have suffered catastrophic injuries.

“A little under 200 of those are for lung transplants,” said Shannon McMonagle, communications coordinator for the organization, which is based in Radnor, Pa. “It’s a relatively small number in comparison to the patients we serve. A lung transplant is the last option for someone living with cystic fibrosis.”

McMonagle said the average cost for transplant surgery is about $600,000, and the costs not covered by insurance can also quickly mount up for patients.

“If you think about Curtis’ case — where he’s living with something like cystic fibrosis, and is incapable of working and facing mounting medical bills and loss of wages — just taking care of yourself becomes a full-time job,” she said.

A recent dinner and auction at Banner Church of the Nazarene in Anderson brought in $6,500 for Almeter. Friends also have taken it upon themselves to raise money, and another event is planned for Dec. 17 at Trios in downtown Joplin.

Battle photos

The camera and photography equipment are Almeter’s constant companions, so the idea of documenting his battle with cystic fibrosis seemed only natural.

The stark, black-and-white images — most taken by himself, others with the help of doctors and nurses — chronicle what his life is like now. Breathing treatments, therapy, hospital stays and his own physical discomfort are captured in vivid detail.

“To be quite honest, they were never intended to be shared with the public,” Almeter says. “In the beginning, I was doing it just to document what I was going through. I showed them to close friends, and I thought in the back of my mind that maybe I’d make a book. I never intended really to have everybody see them.”

He decided to shoot all of the photos in black and white because he liked the use of ambient light and how the pictures translated, and also because he wanted them to be uniform.

After learning that some patients had helped their fundraising efforts by posting photos or videos on the National Transplant Assistance Fund’s Web site, Almeter decided to share some of his pictures online. Though he felt a little uncomfortable about sharing photos that were always meant to be private, he decided that the benefits of sharing his experiences outweighed any concerns.

“I think for people to know about (cystic fibrosis), maybe this could encourage people to become organ donors,” he says.

Almeter says he plans to keep shooting photos during his wait for a transplant and his recovery afterward. He also wants to enlist a nurse to take a picture during the transplant itself.

The procedure of receiving a lung transplant is not unlike the conditions coming together just right in order to capture that perfect photo.

After a potential donor is found, a harvest team is sent in to examine the person and ascertain the blood type. The donor will have to be a match for Almeter, and approximately the same physical size.

Almeter himself will have to be in a narrow physical window of opportunity, in that he will have to be sick enough to need the transplant but strong enough to endure the surgery.

“It’s a really fine line,” he says.

The thought of that potential donor — who is out there somewhere, right this minute — is a little disconcerting, Almeter says.

After all, that person will have to die.

“It’s a weird feeling, that somebody has to give their life for me to get lungs,” he says.

Almeter calls the past year “hard, but very humbling.” There are good days and bad days, he says, but he’s also learning a lot about himself along the way.

“I’m learning to open up more to people. I used to shut things in,” he says. “This has definitely been a hell of a year. I think it helps me to focus on after the surgery and what my life will be like. There’s a little anxiety, because at any time the could call and say, ‘Come let us cut you open.’

“But the truth is, after you get so sick that you feel terrible all the time, you’re just ready for something to change.”

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