Rare diagnosis saves local woman's life

Methodist Stone Oak doctors makes rare diagnosis in nick of time

SAN ANTONIO – Christi Giese is only a year older, but she’s a dramatically different woman from the one who walked into Methodist Stone Oak Hospital in June 2015. Today, she’s 40 pounds heavier, must wear glasses, is semi-retired and needs nearly $155,000 of medicine every month to stay alive. It’s all due to atypical hemolytic-uremic syndrome or aHUS, a rarely diagnosed disease that afflicts only 300 patients in the country.  

Giese described how surreal it has been, saying, “For me it was shocking. I was fine. I was just so busy doing crazy things, working. Now, I'm in the hospital with a diagnosis that's not curable."  

AHUS has wrecked Giese’s immune system and red blood cells rapidly, taking her to near death multiple times over the last year.

Most patients with aHUS that get a diagnosis are already dying of kidney failure. Giese was lucky because she initially went to Methodist Stone Oak Hospital with a bad stomach ailment and nausea. Her renal failure came later, and on a return visit to the emergency room doctors, they were quick to rule out other issues and diagnosis the aHUS.

It was such a remarkable diagnosis that the hospital has changed some protocols. 

“It was a significant learning experience for our physicians and our nursing team as well,” said Scott Rouse, Methodist Stone Oak Hospital chief operating officer. “Lots of lessons were learned that we continue to expand upon every week." 

Rouse said they’ll never be blindsided by aHUS again after seeing its damaging effects first hand.

The struggle isn’t over yet. Giese still has to keep control over a mountain of symptoms, including fatigue, diabetes and water retention. She said her red blood cells have been attacked so savagely that anything can flare up at this point. 

To keep her system in check, there is only one medicine that was developed in 2011.  Solaris is an infusion that must be given every two weeks, at a cost of $78,000 a treatment. 

Giese worries insurance won't approve it every time, but is very thankful for her hematologist/oncologist, Dr. Scott Ulmer, at the Start Center, who, as luck has it, was the doctor for the only other person in the area with aHUS. The disease is not well understood and is believed to be passed on among family members, but even that is unclear.

"Listen to your body. Just because you have a stomach ache and it's continued a few days, sometimes, you can't just put it off as nothing. Time is so important,” Giese said. 

Giese now promotes being your own health advocate and is trying to spread the word of this disease, hoping more people who may be suffering will be diagnosed.


About the Author:

Ursula Pari has been a staple of television news in Texas at KSAT 12 News since 1996 and a veteran of broadcast journalism for more than 30 years.