Two organ donors aid former Olympian from Steamboat Springs
Ex-ski jumper Randy Weber is grateful for his brother’s and his friend’s life-saving donations
When two-time Olympian Randy Weber was diagnosed with a rare adult onset Henoch-Schonlein Purpura in 2016, he quickly fell back on the skills he acquired as a ski jumper growing up in Steamboat Springs.
“I have turned back to some skills I had as an athlete to get through this process,” Weber said. “I had to change my diet after my diagnosis. I had to stick to a strict medicine regimen. I had to work every day to stay positive and maintain my health physically and mentally as best I could.”
Weber, a 1995 graduate of Steamboat Springs High School, spent four years on the U.S. Special jumping Ski Team from 1994-98.
During that time, he won five national ski jumping titles and competed at the Winter Olympic Games in Lillehammer in 1994 and Nagano in 1998.
A case of bad luck
Weber’s years on the national team came with plenty of hurdles, but nothing compared to the one he now faces. It all began with a rash.
“The onset of the rash was pretty sudden,” said Weber, who ran an automotive repair business in Morrison for 18 years. “I waited about a week before I saw a dermatologist. During that week, I tried to figure out if I got into a chemical at work or if I could find the source of the rash.”
The dermatologist quickly determined the rash was not the result of contact with any agents in Weber’s garage, but was instead a symptom of HSP — a condition that involves inflammation of small blood vessels that leak into the skin, joints, intestines and kidneys.
HSP is an autoimmune disease most often seen in children between ages 2 and 6 and the result of an upper respiratory infection. HSP may occur in adults, and when it does, it is often more severe, and kidney damage is more common than is the case in children.
Weber said there is not a single environmental exposure or microorganism that has been confirmed as the cause, and for him, getting HSP was just a case of bad luck.
“Quick diagnosis of my HSP really helped get on the path to recovery with that,” he said. “I was cured of HSP in about 10 months and was given a clean bill of health. I did know that it could return, or in rare cases cause kidney failure. I just hoped for the best.”
Unfortunately, a short time later Weber learned he would need a kidney transplant.
Rescued by family, friends
“The biggest challenge is the unknown,” Weber said.
When he was told he needed a kidney transplant in March 2021, he went through months of testing to see if he was eligible to receive a transplant.
“And in the middle of that process, I was told I also needed to have a liver transplant,” he said. “It is hard enough to find one organ and get through that surgery — now I need two.”
Weber had his name added to the transplant list. He was prepared to wait, but then Weber learned that his brother, Geol, was a perfect match for the kidney. Then his good friend Kelly Williams stepped up to help out.
“My (fiancée) and I found out Randy was sick and filled out questionnaires from UCHealth Transplant Team to see if we could be potential donors,” Williams said. “My (fiancée) was eliminated because of blood type, but I kept moving forward.”
Williams and her fiancée, John Alley, who had coached Weber’s son Espen at Columbine High School, had met Weber and his family about six years ago.
“Once things started to take shape and I found out I was able to be Randy’s donor, there was no question,” Williams said. “Randy needed a liver and I had one he could use, so why wouldn’t I share?
“I also knew that if roles were reversed, Randy is the kind of person who would not have hesitated to help me or anyone else if we were in his shoes.”
On the day of the surgery, Feb. 23, Weber spent more than 10 hours in the operating room.
His day started at 5:30 a.m. By 7:30 a.m., teams of surgeons were busy working on both Weber and Williams in part one of the procedure.
During that surgery, Weber had 60% of Williams’s liver, which contained a large single section of portal vein and the main artery that supplies the blood, grafted to his portal vein and artery.
The surgeon also reconstructed other sections of the liver, so that it will properly regenerate and reach full size as it heals.
After the team of surgeons completed that task, Williams headed to recovery, and Weber and the surgeons moved on to the second part, in which Geol’s kidney was connected to the blood flow in Weber’s femoral vein and artery.
The surgeons then created a connection to Weber’s bladder. Williams and Geol are both recovering from the surgery.
“Physically, I’m feeling better and better every day, and much better than I thought I would,” Williams said. “Any time I have a bad day, I think of Randy or people waiting on the transplant list, and it puts my pain in perspective.”
A slight setback
After returning home earlier this month, Weber had a bit of a setback after doctors discovered that he had an infection that would send him back to the hospital. He was given high doses of antibiotics to ward off the infection and additional medications to address any possible organ rejection that the infection could cause.
“I knew I would need anti-rejection medications for the rest of my life, but I did not realize the amount of medication I would need the first couple of months to heal from the surgery, fight off infection and get the balance of anti-rejection medications right,” Weber said.
He is currently taking 11 pills first thing in the morning, four during the day, nine at dinner time, and one more at bed time.
“I’ve learned to be patient and follow the instructions of my medical team,” Weber said. “As someone that competed as an individual, and later worked for myself, not being in control of my fate was hard. I took control over the things I could control, and let the rest go.”
The taste of competition
Weber grew up in Steamboat Springs and started ski jumping when he was 6 years old after becoming bored with Alpine skiing.
He enjoyed a successful career as a junior on the hills at Howelsen, and went on to have a top-notch international career. He retired after the 1998 season and spent that summer helping to build his mom Linda’s home in Steamboat Springs, where she still lives.
After finishing, Weber headed to Denver, where he worked at an insurance brokerage that specialized in health and fitness clubs. Later, he discovered a passion for fast cars.
“I worked there for six years and then started my own business in 2004,” Weber said. “I started an automotive shop that specializes in Volkswagen, Audi and Porsche.”
Weber’s interest in high-performance sports cars was sparked that year, and he started doing “track events,” in which drivers test their skills in their own car on a racetrack. He eventually opened Autobahn Premier Service.
“I really enjoyed the competitive nature of car racing and decided to start a shop to help other people enjoy tuning their cars and making them better on the track,” Weber said. “There is not a ton of money in that, so we also do regular service and maintenance.”
After being diagnosed with HSP and learning he would need a double organ transplant, Weber made the difficult decision to close his shop.
“I closed the shop because, as a two-man operation, it would be impossible to keep it running while I recovered from surgery,” Weber said. “My business partner is 10 years older than I am and was ready to retire. Closing was the only real option.”
The decision meant Weber had to give up his monthly income, and he is now living off the proceeds that came from selling all of the shop’s assets — the equipment, tools, inventory of parts and the lease on the building.
He kept the name, his customer list and other proprietary information, and the corporation is still active. Someday, Weber hopes to reopen.
“I am not sure how long it will last, as I have no idea what the total cost of the transplant will be and how much time I will be out of work,” Weber said. “I am very glad my wife is able to work right now and the company she works for has been awesome through this whole process.”
He has been married to his wife, Wendy, since 2016 and has a 22-year-old son from a previous marriage who is a senior at Western Colorado University in Gunnison.
Weber’s bout with HSP has opened his eyes and led to several life changes. He is currently recovering, but without a job, he isn’t sure what the next chapter will bring.
“As of now, I do not have a GoFundMe page or any other fundraising vehicle,” he said. “I have been asked about it a few times. I think it is a very real possibility that I may need to set one up.”
Weber said he has been very fortunate to receive some financial help from organizations and individuals in the Steamboat community and is extremely grateful from their support.
Other than the financial burdens he is facing, Weber remains in debt to those who stepped up and donated their organs in his greatest time of need.
In fact, he said that’s why he is now focusing on raising awareness for organ donation.
“I learned an enormous amount about organ donation as a result of my diagnosis and transplant,” Weber said. “Everyone gets to decide when you get your driver’s license if you want to be an organ donor … That is about as far as most people go when it comes to thinking about being an organ donor. It is also where most people think organs for transplant come from deceased people who had agreed to be donors.”
While a good number donors are deceased, Weber wants people to realize there are other ways to help those in need.
“A living donor offers a higher success rate because of the pre-op testing that can be done to confirm the best possible match,” Weber said. “The ability to plan for the surgery is also a big help. It made a big difference for me.”
Williams agreed, saying that organ donation is a personal choice and there are a lot of factors to consider, including recovery time, time off work and having access to family and friends who can be a caregiver.
In 2020, the Living Donor Support Act and Living Donor Insurance Act went into effect in Colorado, making it easier for people to become living donors.
“I never imagined that I would be in this situation or that someone we love and care about would need such a serious medical intervention,” Williams said. “I am beyond grateful that I had the opportunity to help a friend in such a meaningful way. I’m also really amazed by how much love and support have poured out from my own community of family, friends, neighbors and work colleagues to help us get through this recovery period. “
To reach John F. Russell, call 970-871-4209, email jrussell@SteamboatPilot.com or follow him on Twitter @Framp1966.
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