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No slowing them down

Jessica Wiering and Trisha Kienitz have an obvious connection, but also share the same fear of the future when it comes to funding for amputees.

September 24, 2011
Story, photos by Jenny Kirk , Marshall Independent

MARSHALL

Some people might consider having a prosthetic leg to be an obstacle, but Southwest Minnesota State University students Jessica Wiering and Trisha Kienitz haven't let the loss of a limb slow them down much.

After the two met in an agriculture class at SMSU, they found they had very different experiences dealing with their prosthetic leg, but they're united by one common fear - that the state of Minnesota will cut funding for Medicaid, essentially taking away their chance at a normal life.

Article Photos

Jessica Wiering, and Trisha Kienitz show off their prosthetic legs at the coffee shop Friday on the campus of Southwest Minnesota State University. Wiering, a Tyler native has a C-Leg, while Kienitz has a general one with realistic skin. Both of them are concerned about possible Medicaid cuts to their services in the future.

"Several states have taken the extreme steps of trying to modify Medicaid benefits so that the state would deny access to artificial limbs," Wiering said. "I know the economy is bad and states face serious budgetary crisis, but I can't imagine that things are so bad that states would take away artificial limbs from amputees."

JESSICA'S STORY

Wiering, a graduate from Russell-Tyler-Ruthton, is the oldest of three children. Back in seventh grade, she was a typical, carefree pre-teen. She played volleyball and debated about trying theater. In April, Wiering fell down her basement stairs, which, in hindsight, may have saved her life. After numerous trips to the doctor because of pain in her leg, Wiering saw Dr. Anthony Nwakama in Marshall.

"I was diagnosed with bone cancer at the end of June," Wiering said. "I was 13 years old. The cancer was there, but it became more agitated when I fell. It may have been contained in the bone had I not found out. It could have went unnoticed for quite some time and then gone somewhere else in my body."

In September 2003, Wiering's left leg was amputated. At first, she had been told that they wouldn't know if they had to take her leg or not until they started the surgery, but eventually the doctors made the fateful decision.

"It was hard, but yet I'm glad I knew beforehand," Wiering said. "We knew a whole month before, so we kind of came to grips with it, as good as you can anyway. I don't think I really psychologically finished the grieving process until I graduated high school. I'm not kidding."

After surgery, Wiering wasn't healing up as well as doctors wanted, so she wasn't able to be fitted with an artificial leg until six months later.

"I was still doing chemo and I wasn't healing up right," she said. "I did two rounds of chemo before my surgery and four or five after. I got fitted when I was still doing chemo, but then I gained weight back and had to get it re-fitted."

Since then, Wiering has tried a number of different prosthetic legs.

"At first, I had a general one with a hydraulic knee," she said. "It was really simple. But then I tried one with a different socket option. Right now, I have this plastic liner than I roll on and then it has a strap."

Wiering definitely didn't care for the suction option.

"It was horrible," Wiering said. "If you think about anything that has to be suctioned, if it gets moist at all, it's awful."

In 2008, Wiering moved up to a computerized knee, called a C-Leg.

"The other one didn't really stop me from falling and you had to be really careful with it," Wiering said. "This one actually gets plugged into a computer and you can adjust settings, pressure or whatever. I can go over stairs like normal, whereas with my other one, my knee would have dropped."

All of Wiering's treatments have been at the Rochester Mayo Clinic, where she still goes for an annual check-up. At least once a year, Wiering also heads to a satellite office in Sioux Falls, S.D.

"It has to get sent in once a year for a whole week for general service," she said. "I'll go down and they'll give me a loaner leg to use while they're working on mine. When it's done, we just have to plug in the settings. I like this one much better."

Twice a year, Wiering needs to replace the silicone liner that she wears. She's thankful that many of those necessities have been covered through her dad's Blue Cross Blue Shield plan. Her mom didn't work during those early treatments. Medicaid has picked up the rest.

"None of it's very cheap," she said. "I think the liners are at least $700. With the other ones, there was a lot of tweaking and nothing was working right. All those little bills add up, too."

TRISHA'S STORY

Kienitz was born without her right leg. She said the doctors have no reason why.

"I don't know what it's like to have two legs," Kienitz said. "People ask me if it is hard to deal with, but I don't know anything different. I would rather have it my way than to lose it later on."

Kienitz was born with two toes and a knee that stuck out from her hip area. In 2000, Kienitz had surgery to remove the knee.

"I was in a body cast for three months," she said. "I was eight. My friends would be me on a three-wheeled bike and we'd ride around."

Since birth, Kienitz has been a patient at the Shriner's Hospital for Children in the Twin Cities.

"It's a great place. I love it," Kienitz said. "I got my first prosthetics when I was 11 months old. I started walking when I was 14 months old. It was just a little leg and didn't even have a knee or anything. My mom still has it."

Kienitz returns to the Shriner's Hospital twice a year or so for checkups.

"I'd grow, so they'd have to make a new one," she said. "I just have a basic leg and mine has skin on it so it looks like a real one. My strap goes around the waist and I have socks that go over my leg."

Since she's slowed down growing, Kienitz gets a new leg every year-and-a-half or so. But maintenance is high.

"There's wear and tear, growing and also rubbing issues," she said. "The new skin I have is covering my whole leg. I've usually just had it up to my knee. But now it gets holes in the knees and looks terrible so I've been going in every three months."

Kienitz has more range of motion since the surgery, but she hasn't been willing to undergo additional ones.

"When the C-Leg first came out, they asked me to try it," Kienitz said. "But my leg was too long. The doctors talked about having surgery to take my toes off, but I said I didn't want to go through that pain just for a leg. I said I'd wait a couple of years and hope new technology would come out."

Kienitz also happened to be in the middle of her golf career at the time. After advancing to the Minnesota State Golf Meet her sophomore and junior year for MACCRAY High School, she finally got in medal contention her senior year.

"I got eighth place, the last spot for a medal," she said. "I was in fifth after the first day, but some girls came up and beat me by one stroke. But I was fine with eighth. I was the first girl from my high school to ever go to state."

On the links, Kienitz had to make up for shorter drives with her fine-tuned short game.

"In golf, you push off with your right leg, so I always had shorter drives," Kienitz said. "But one girl, she was 20 yards from the hole and I was 150, and I ended up getting a four on the hole and she got a five. It's the short game that I can keep up with and score on."

After graduation, Kienitz took her game to SMSU, where she is currently a sophomore agricultural business major. She was also asked to join the wheelchair basketball team.

"The wheelchair basketball guys came up one day and said they noticed my leg," Kienitz said. "What a way to start a conversation. They were wondering if I'd consider trying it. I told them I was here to play golf."

But after more prompting, especially by her golf teammates, Kienitz decided to give it a try.

"My sister has played basketball since fifth grade, and my dad coached, so I know everything there is to know about basketball," Kienitz said. "But the pushing, dribbling and shooting is a little different. I caught on pretty quick, which was exciting."

Kienitz was even invited to try out for the Olympic Wheelchair Basketball team. After traveling to Denver, Colo. in April, she gave it her all at the 10-hour tryout.

"I didn't make the team, but these girls were unbelievable," Kienitz said. "I was one of two girls who weren't in a chair full time, so the others knew how to handle their chair and moved fast. I was still learning how to handle the chair. But it was a once-in-a-lifetime experience and I was happy to be part of it."

Not only did she end up having a good time, she also improved her golf game.

"Now with wheelchair basketball, my 125-yard club that I hit last year, I can hit 150 this year," she said. "It's just because I gained so much more muscle in my arms from pushing a wheelchair. So it's benefiting golf for me."

Kienitz still worries constantly about falling, but she handles it well.

"It doesn't bother me," she said. "I just get back up and keep going."

THE FUTURE

Wiering, a senior at SMSU, plans to be a social worker, a decision she based on the experience she had with a social worker at the Mayo Clinic.

"I'm excited, but worried at the same time," Wiering said. "What's going to happen, if while I'm looking for a job after school and I'm past the point where I can be on my parent's insurance? I'd probably be on Medicaid. If they make cuts, I wouldn't have any coverage. It's just scary."

While the Shriner's Hospital typically covers children until age 18, the care for Kienitz was extended to age 21. The countdown has Kienitz extremely concerned about her future.

"I'm 19 now and when I hit 21, I'm done," she said. "I'm starting to worry. We haven't found a doctor yet, but the Shriners have counseling to help you transfer. It's just so expensive."

Without medical access, Wiering said she wouldn't be able to be as productive.

"A person's health would decline if they are stationary," she said. "This leg makes me feel like I'm not going to fall over all the time. I can do more things, like work and go biking. Without it, I'd be limited."

Thanks to lobbyist support from the Amputee Coalition, the American Orthotic and Prosthetic Association and other groups, the threat to cut or reduce prosthetic benefits has been quelled in a number of states. Actor John Sicilliano, whose leg was amputated after a car accident, has also been a tenacious advocate.

"Not enough people know about it, so they think they can just cut it," Kienitz said. "But I'm like, 'no.' If we didn't have this, we couldn't work."

Currently, Minnesota is one of eight states to introduce legislation in 2011, seeking fair insurance access for amputees.

"How do you try and pay for a leg out of your pocket?" Kienitz said. "That's a car. You can't just come up with that."

 
 

 

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