Hiker back on the trail following leg amputation
Lives are defined by dates and times. For Ruth Frieboes, Sept. 6 is a date that she will remember for the rest of her life. In 2012, after battling an undiagnosed illness in her right leg for the better part of three years, doctors decided Frieboes’s leg needed to be amputated.
One year later, on Sept. 6, 2013, Frieboes, 53, had regained strength and marked the date by hiking up to Twin Lakes in the Elkhorn Mountain Range.
But how she got to that point was a long, arduous journey.
It all started in 2009, when a usually active Frieboes experienced unusual swelling in her right leg.
“My doctor just kept saying it was lymphedema or something and to treat it like that,” Frieboes said. “But the more I did that, the worse it got.”
Frieboes decided to go to a Mayo Clinic in Minnesota in 2011 where she spent three weeks. But she still didn’t get many answers as to what was causing the swelling of her leg.
“It felt like I was getting stung by a thousand bees at a time,” Frieboes said. “It was really, really painful.”
Frieboes’s overall health started to deteriorate after that. She lost 62 pounds in the fall of 2011.
Fed up with not getting any answers from doctors, Frieboes went to Dr. Kal Kelley in Baker City for one more opinion.
“I went to his office kind of like an interview,” Frieboes said. “I said ‘I have no expectations of you figuring out what’s going on because I’ve been to the best of the best and no one knows what it is. But I need someone who’s in my corner.’”
Frieboes, having to use crutches to get around at this point, started seeing Kelley weekly for two-hour appointments. But it was around this time that other symptoms started attacking her body.
An open wound developed on her ear and she had rash-like lines up and down her arms.
Kelley sent Frieboes to a tissue specialist for a biopsy. After some tests, the results came back and Frieboes was told she had mixed connective tissue disease, an autoimmune disease that affects different tissues throughout the body.
Doctors put Frieboes on an eight-week course of injections and medication, but none of it helped.
“They said maybe my body is rejecting my own cells with this mixed connective tissue disease,” Frieboes said.
Frieboes was then put on a six-week regimen of anti-rejection medication that people who have transplants use. Four weeks into the regimen, Frieboes’s right leg swelled to the size of her waist.
Two days later, a hematoma developed on top of her foot.
After an MRI, Dr. Kelley sent Frieboes to Oregon Health and Science University in Portland. Eventually doctors discovered a 100 cc pocket of lymph fluid causing the swelling.
“They got it down looking like a normal leg again,” Frieboes said. “They did some biopsies and they all came back normal. (Doctors) weren’t seeing anything. Every test that they ever did came back normal.”
After staying in the hospital for a week, Frieboes returned home only to see her leg swell back up. Frieboes’s health declined dramatically and in January 2012 she hit a breaking point.
“I knew I was dying,” Frieboes said.
Frieboes bounced around between different doctors before getting sent to see Dr. Douglas Smith, an amputation specialist in Seattle.
After a little research, Frieboes found out that Smith is one of the best in his profession in the United States, including being the contact for military amputees.
“It’s kind of a big deal,” Frieboes said. “How do you come from North Powder and get the best-of-the-best surgeon in the United States?”
Frieboes contemplated amputation and did her own research before finally deciding to have the operation.
“By the time I had the surgery in September, I don’t think I would have survived another month,” Frieboes said.
Frieboes went into the surgery with a 104-degree fever, but she didn’t tell doctors because she was fearful they would cancel the surgery. The operation took 2-½ hours and when it was over Frieboes had a temperature of 98.6 degrees.
After a touch-and-go couple of days with her blood pressure, Frieboes’s energy level increased, the wound on her ear healed up and her arms cleared up.
Frieboes was forced to rent an apartment in Seattle for six weeks to keep in contact with her surgeon each week. She attended an amputee support group and went to a rehab psychologist.
“I knew once I got back to (North Powder) there wasn’t those options around here,” Frieboes said.
Eight weeks after the surgery, Frieboes started the process of learning how to walk again. Three months to the day after losing her right leg, Frieboes took her first step on her own.
“It was amazing,” Frieboes said.
In April of this year, Frieboes did her first 5K race. She did another one in July and took 20 minutes off her previous time. In May, Frieboes and her husband, John, took a trip to Yellowstone National Park for their anniversary.
Frieboes hiked her first mile there.
And that led to September, and the anniversary of her surgery.
“I knew where my yearlong window was, and I wanted to try and hike my favorite trail, which is going up to Twin Lakes,” Frieboes said.
So on the cold and windy morning of Sept. 6, Frieboes and her husband made the 9.4-mile hike. It took 6-½ hours and Frieboes took 19,000 steps.
“The best part was when I actually saw the lake,” Frieboes said. “Emotionally, that was something I thought I’d never see.”
Frieboes said that Sept. 6 is a date she will never let go by without acknowledging it.
“I’ll probably do something on Sept. 6 every year,” Frieboes said. “I already have another another trip to Yellowstone planned. I’m going in October on my birthday, and I’ll get to try some of the things I wasn’t able to do in May.”