Need a kidney in Austin? Hurry up and wait

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by ANDY PIERROTTI / KVUE News and Photojournalist ERIN COKER

Bio | Email | Follow: @AndyP_KVUE

kvue.com

Posted on November 22, 2012 at 10:18 PM

Updated Friday, Nov 23 at 8:24 AM

AUSTIN -- Kim Hodge is a warrior.

It’s not because she’s dressed in her high school mascot’s colors when being interviewed.

It’s not because she works up to 70 hours a week as Westwood High School’s assistant principal (its mascot is a warrior).

She's a warrior because she battles something much more difficult every second of the day. "I have polycystic kidney disease. I was diagnosed at 13-years-old," Mrs. Hodge explained.

Two years ago, her kidneys failed. So she put herself on a waiting list for a transplant. Every night she hooks herself to a dialysis machine to stay alive. Two bags of fluid flow through her body each night to remove toxins from her blood.

Her mother died of the disease and her only living sister struggles with it too. "It's a situation where I can't go and say, 'Hi, my name is Kim. Would you give me your kidney?' I can't do that," said Hodge.

A KVUE Defenders investigation uncovered that Hodge, and more than 400 other Austin patients in need of a kidney, wait longer than nearly all similar-sized Texas cities, putting their lives at risk.

According to reports from the Scientific Registry of Transplant Recipients, the median time Austin patients wait for transplants is more than six years. That's longer than the nation, and more than three times as long as all other non-major metropolitan Texas cities with local transplant programs.

Waiting Times:

• Austin: 6 years
• U.S. : 4 years
• Fort Worth: 2 years
• Lubbock: 1.5 years
• Galveston: 11.5 months
• Temple: 16 months
• Tyler: 15.7 months 

"When I heard that, I was devastated," contends Hodge.

"It doesn't help Austin and our patients. You know, we're a capital city and a major metropolitan community," argues Bob Spurck, who helped open Austin's first kidney transplant center as head of UMC Brackenridge hospital in 1972.

“We just need to get it at a more level playing field, so the patients get a quicker opportunity to be transplanted," said Spurck.

It gets worse. The KVUE Defenders also found Austin doesn't get its fair share of kidneys donated in our own area. In 2010, 71 kidneys were harvested in Austin, but only five of those were transplanted in the city.

"Even though we have a community that is probably one of the best for organ donation, it's amazing that there are not enough kidneys for those of us who live in the area," Hodge reacted after reviewing the information.

Several years ago the federal government gave UNOS, or the United Network for Organ Sharing, the authority to set kidney transplant policies for the nation.

Dr. Mark Aeder is on the UNOS committee that sets kidney transplant policies.

When asked if Austin was getting its fair share right now, Dr. Aeder answered, "Well, I don't have the exact statistics. We'd have to take a look at the total number of offers that were made.”

Here's why it's happening.

About 20 years ago, UNOS gave every non-major metropolitan transplant community in Texas first access to locally donated kidneys, with the exception of Austin.

The local transplant programs are called ALUs, or Alternative Local Units. It gives patients living in those communities first choice to locally donated kidneys.

There are six in the state. Even though Austin is comparable in size, UNOS has never granted Austin an ALU status.

Texas ALU Programs

• El Paso
• Fort worth
• Lubbock
• Galveston
• Temple
• Tyler

While ALU waiting times decreased over the past several years, Austin's waiting times got worse.

"It's up to the individual transplant programs themselves, and the patients who are served by those transplant programs to decide if they are going to accept that kidney,” said Dr. Aeder.

How to fix the problem:

UNOS is now pushing through proposed changes it says will help with delays, but some think it could make it worse for cities like Austin.

UNOS wants to essentially eliminate nearly all local kidney transplant programs, or ALUs, and make a large waiting list in Texas. UNOS claims it will put everyone on a more level playing field.

Spurck believes the changes will only help patients in larger cities, like Dallas and Houston.

“There's no way of knowing if that's going to happen or not; unless we have an absolute baseline in which to work from," contends Dr. Aeder.

Hodge says she often stays up late at night wondering if a kidney will come in time. “Not being able to see my son grow up, not being able to see my grandkids from my step-daughter's grow up, not being there for my husband."

Texas Organ Sharing Alliance, or TOSA, is the local organ sharing advocacy organization for the region. It does not set policy on kidney transplantation.

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