2 Drove to Greeley and visited the dorms Anne and I lived in, took a photo of the stone wall where I proposed to her 9/73 (Yes, btw) and visited KUNC where I started in radio as a 17-year-old freshman
3 Drove to Denver and took my in-laws, Bob and Kathy Barela, out to dinner at a fine-dining independent Mexican food restaurant in The Highlands
4 Thu: Met my sister Marcia and Goddaughter Jennie and drove to and hiked to the top of Mt Evans @ 14,265 ft. Lunch in Evergreen, showed them the Bear Creek, and shared a bottle of wine at O’Fallon Park.
5 Home to Barela’s
6 Fri: Lunch in downtown Denver.
7 Then Wilco at Red Rocks. Wilco killed.
8 Late beer with Bear Creek HS classmates outdoors at Chad’s on Green Mountain
9 Sat: Walk in Stone House Park. Chill.
10 Bear Creek High School class of ’72 reunion at Fox Hollow. Forty (4-0) years. Really good time!
11 Sun: “Sounds of the 70’s” reunion of alumni singers of our high school show choir Sounds of BC. Multiple award-winning group that had 65 performances our senior year alone.
12 PM: Root for those poor, sad Rockies.
13 Mon: Hiked in Bear Creek Park. Lunch in Cherry Creek with old friend Dave Durham and his great wife Ann Davis.
14 Attend twilight Rockies game with brothers-in-law Mike and Tom. Rockies win!
(Walk for PKD starts at 9:30 a.m. Saturday at River Park, off Concord Road in Brentwood (across from library.) To donate or learn more, go to www.pkdcure.org.)
Goals have changed drastically for Steve Baum over the past 10 years. A man who had competitively climbed the corporate ladder now works for a third of the money at a seasonal government job.
And he couldn’t be happier.
Baum had a kidney and liver transplant on Nov. 11, 2009, after a nine-year stretch in which polycystic kidney disease deteriorated his health. When he and his wife got the call that every person on a transplant list waits for, he was ready for anything. Even death.
“At that point, I’d stopped praying for health,” Baum says. “I prayed for his will to be done.”
Since surgery, Baum’s health has rebounded and goals were reawakened.
“You’ll find that transplant recipients are the most grateful people,” he says. “Words can’t describe it. It’s so deep in your gut.”
His constant gratitude for a second shot at life means paying it forward and living to the fullest, which Baum does on a daily basis. He’s spoken at Rotary clubs and to whomever will listen about organ donation; he’s run two half-marathons and won three bronze medals in this year’s Tennessee Senior Olympics. He’s writing a book.
And Saturday morning, he and his wife, Anne, will be cheering on walkers at the annual Walk for PKD at River Park in Brentwood, across from the Brentwood Library. They’ll also be signing up organ donors. Goal-oriented Baum has signed up 241 donors and says he won’t stop until he signs up 1,000.
Disease kills slowly
PKD, which sapped Baum’s energy and squeezed life out of his kidneys, is incurable. Treatment in its late stages is left to dialysis and transplants. It’s a disease, Baum says, that is often hidden and that many don’t know they have.
PKD is often predictable. The first sign, typically showing in the 30s, is often high blood pressure. Then, over the next 25 years, cysts grow and eventually choke the kidneys. Baum also had cysts on his liver, which did the same thing.
“Chronic disease takes your motor away,” he says.
By the time of his surgery, his diseased kidney weighed 9 pounds; his diseased liver weighed 30 pounds.
He was 54 and says he felt like he was 74. These days he says he feels like a 30-something. “I have tremendous energy now.”
PKD runs in families.
“None of the Baum men made it past 70,” he says. “I intend to change that.”
Support grows; cure remains elusive
Carol Boeing, whose father died of the disease, was diagnosed at 28. She had a kidney transplant Nov. 29, 2008.
“It was Thanksgiving weekend,” she says. “It was right when I needed it.”
Like Baum, the transplant changed her life.
Now 66, Boeing leads Nashville’s PKD Foundation chapter and heads up the annual walk, now in its fifth year.
“The biggest thing I want is to find a treatment and cure,” she says. “That comes from raising money.”
The chapter raised $51,000 for the PKD Foundation last year.
Have you signed up to be an organ and tissue donor yet?
NEWS: The Tennessean and its Williamson AM section were kind enough to help promote our cause:
To the editor:
April is National Donate Life Month
In Nov ’09 at 11 minutes before 11 PM on the day before the 11th we received the call that a liver and kidney had become available for my life-saving transplant. My family suffers from the genetic disorders of Polycystic Kidney Disease (PKD) and Liver Disease (PLD) My organs were massively enlarged and shutting down. The liver they removed weighed 30 lbs.; the kidney 9 lbs.
But did these circumstances come about solely because of fickle fate or was it a small piece of God’s plan? It was the incredible generosity of an anonymous organ donor that saved my life. And where was God’s hand in this? God guided the heart of my donor and gave me and my family the strength and will to persevere through:
Faith. Without pure, unadulterated faith it could have turned out quite differently. With a chronic disease and a slow descent you get a lot of time for both reflection and prayer. And to give up?
Very early on I stopped praying for my good health and the delivery of a miracle and instead came to pray that “God’s will be done.” Oh I desperately wanted to live don’t get me wrong but I concluded that if you believe in a soul, in an afterlife, and have faith in a power greater than yourself then you cannot fear death. I prepared myself really believing the outcome would be what it was supposed to be and I made the necessary preparations for my wife, Anne, and the kids.
Hope. While faith comes from within hope is where all your loved ones, your friends, the complete strangers who hear about your situation carry you further than you could ever go alone. Hope is contagious and, when driven by so many, powerful. There were many times in the hospital, like when they almost lost me in an internal bleeding episode, that we knew we were being uplifted up by the hopes and prayers of so many.
Charity. I don’t know my donor’s name or family. Anne has written to them and not yet received a response and that is certainly their right. Frankly, I’m still working up to that because I have a hard time feeling worthy enough and there is so much I need to do to live up to my donor’s charity. Maybe that’s why I’m so driven: I have a goal of enrolling 1000 new donors and I do it to honor the incredible charity of my donor.
And the greatest of these is Love, of course, and I have received much more than my share.
I can only pray that a system is maintained that is as equitable as possible to those who wait because, candidly, “fair” is impossible.
And beyond that: God’s will be done. Hear the call and become an organ and tissue donor today!
Also special thanks to Joe Biddle, TN’s top Sports columnist, for his kind remarks:
• “Franklin resident Steve Baum is not only an organ recipient, he had a double transplant in 2009. Baum was on the transplant list for 11 months. He had a rare blood type (B-positive) and needed liver and kidney transplants to survive.
He has written a book, The Life and Times of Chuck Basement. After the transplants he lost 40 pounds. Both his liver and kidneys became enlarged. His liver weighed 30 pounds.
He got back on a treadmill he had used eight years as a clothes hanger.
Baum last month completed the Disney’s Princess Half Marathon in 12,518th place. He wore a T-shirt that said “An Organ Donor Saved My Life.”
His next run will be the Country Music Half Marathon on April 30. After that, he and his brother-in-law will hike a 14,000-foot high mountain in Colorado. At age 56.”
Completing the Disney’s Princess Half Marathon” in 12,518th place last month was a proud accomplishment for Franklin resident Steve Baum. Women runners slapped Baum on his bum as they passed him, offering words of encouragement such as, “’atta boy!” and “you go for it!”
Double transplant recipient Steve Baum crosses the finish line at the Disney’s Princess Half Marathon in Orlando.
He surmised it was a response to the T-shirt he was sporting, which proclaimed, “An Organ Donor Saved My Life.”
Baum, who has a somewhat rare B+ blood type, was on the transplant list for 11 months. Due to a rare combination of unrelated polycystic liver and kidney diseases, and both organs had to be replaced. He got the long-awaited phone call 11 minutes before 11 o’clock on the day before the eleventh month.
In November 2009, he received a double transplant. Both organs came from the same donor, at the same time. “I can only call that a blessing,” he said.
The transplant provided him new organs and an instant weight loss of 40 pounds. His original liver and kidneys had become so enlarged, Baum said, “I walked like a woman who was nine months pregnant.”
When removed, his liver weighed 30 pounds, and one of his kidneys, 9 pounds. “I must’ve been the only man in America who lost 40 pounds over Thanksgiving,” Baum joked.
Getting from the hospital bed back onto his treadmill, which “had spent eight years as a clothes hanger,” Baum said, was no easy feat. It was a journey he took one step at a time, and one he chronicles in his new book, “The Life and Times of Chuck Basement,” which also includes a second memoir, “The Road to the 2010 US Transplant Games.” The title character of Baum’s book is named for his childhood alter ego. “When I was four years old, I was kind of short, fat, and had a lazy eye. I was somewhat of a target to get picked on a little bit,” he said. “Little Steve wasn’t going to be able to deal with bullies very well by himself,” so he decided to create his own tough guy persona: Chuck Basement.
“Whenever I face challenges in life-whether it’s a bully or even my surgery-I look back and say, ‘what would Chuck Basement do?’ He has more courage than me, and he gets me through those moments.”
Baum is quick to add that his real-life wife, Anne, and family are his primary support system, without whom he might never have crossed a literal or metaphorical finish line. “I can’t imagine having gone through this without them,” he said.
Recovering from his double transplant has been a “step by step process,” said Baum, who was still using a walker through mid-January 2010.
At a hospital-hosted picnic for transplant recipients that April, Baum, who stands at 6 foot, 3 inches, was recruited to play basketball in the US Transplant games. “At that point, I could walk fine, but it was still difficult to stand in one place for longer than five minutes because I still lacked a lot of core muscle,” Baum said. “So I thought, well, that’s a goal.”
And that mentality stuck with him, through the US Transplant games and beyond, when he started eyeing the Disney’s Princess Half Marathon this year. “I knew enough to know that it was flat there, and the weather would probably be good,” Baum said.
“Plus, my extended family all live around Orlando, and I knew they would be there to support me. So, I went ahead and enrolled. Even if I just walked the whole thing, I wanted to be able to say I did one and got it done.”
And so he did-mostly in a gait he described as a “sort of shuffling jog,” due to the still weak muscles in his legs. Nevertheless, Baum said, “It was a great moment for me, because when I was healthy and 25, I was a fair athlete, but I wouldn’t have dreamed of doing a half marathon then.”
And of course, there was the whole double transplant thing. “I did it first of all to honor my donor and the incredible charity and generosity of the person who signed on that line,” Baum said. “And secondly, I did it just to do something with this second gift of life. I didn’t want to just sit around and just say, ‘gee, how lucky I am!’ I wanted to do more.”
Baum has set a personal goal of recruiting 1000 new organ donors. Running half marathons in his T-shirt is one way he’s promoting his life-saving cause.
Next up, he’ll try his hand-or rather, feet-in the Country Music Half Marathon, April 30 in Nashville.
After that, he said, “I’m going to climb a mountain.” He’s currently planning a trip to Colorado where he and his brother will hike 14,000 vertical feet. “It’s not a difficult technical climb,” Baum said, “but I’d like to get a picture with me wearing that T-shirt at the top of a mountain.”
(Earlier this week the United Network for Organ Sharing or UNOS, a government-funded agency, announced it was considering dedicating 20% of available organs to specific age matches in an effort it believes will allocate more deceased donor organs to those with a longer expected life span. While on its surface this appears to be the right thing to do it has the potential for many unintended consequences. In an editorial the New York Times warned against this due to these unintended consequences. My friend from high school, T-Mac, sent me the link and asked for my opinion.
This was my response that ended up going out to a lot of friends)
Hi Terry, and Janne, and all of you,
Since a number of people from our church were inadvertently copied on your query I thought I would include them in my full response. Anne and I could not have made it through the illness, the deterioration, and the transplant process without them. I know St Philip church was, as a whole, with us every step of the way with their support and, most importantly, their strong and heartfelt prayers. It’s a big church and I needed all the help I could get.
I agree with the NY Times editorial you sent and am both surprised and proud of them that they came out this way. If one supports 100% of Obamacare one must accept rationing and the Times was more than supportive of this legislation. In true secular fashion and with their passion for science almost exclusive they missed one very important point.
Yes, there became a series of circumstances that came to work in my favor not the least of which was one doctor’s referral of me to this outstanding medical team at U of Alabama Hospital. But did those circumstances come about solely because of fickle fate or was it a small piece of God’s plan?
Faith. Without pure, unadulterated faith it could have turned out quite different. With a chronic disease and a slow journey you get a lot of time for both reflection and prayer.
Very early on I stopped praying for my good health and the delivery of a miracle but instead came to pray that “God’s will be done.” Oh I wanted to live don’t get me wrong but I concluded that if you believe in a soul, in an afterlife, and have faith in a power greater than yourself then you cannot fear death. I prepared myself really believing the outcome would be what it was supposed to be and I made the necessary preparations for Anne and the kids.
Hope. While faith is from within hope is where all your loved ones, your friends, the complete strangers who hear about your situation carry you further than you could ever go alone. Hope is contagious and, when driven by so many, powerful. There were many times in the hospital, like when they almost lost me in the internal bleeding episode, that we knew we were being uplifted up by the hopes and prayers of so many.
Charity. I don’t know my donor’s name or family. Anne has written to them and not yet received a response and that is certainly their right. Frankly, I’m still working up to that because I have a hard time feeling worthy enough and there is so much I need to do to live up to my donor’s charity. Maybe that’s why I’m so driven: I do it to honor the incredible charity of my donor.
And the greatest of these is Love, of course, and I have received much more than my share.
To answer your question I can only pray that a system is maintained that is as equitable as possible because, candidly, “fair” is impossible.
I remember precisely because the call came at eleven ‘til eleven on the day before the eleventh. And it was November. No one called on the home line anymore – it had been “magicjacked” to save sixty bucks a month. We only used the number because it still looked good to have a home number and not just mobiles. More rooted, I guess.
Anne, startled, looked at me and I looked back. Who called at eleven ‘til eleven on a weeknight? I see her face reading, “What’s wrong? Is it one of the kids?” Even with great kids there are always mothers’ nightmares.
The jacked phone never answered correctly on the first ring so you had to push the answer button and just ask, “Hello?” or, “This is the Baum’s,” or some-such until the system caught up with itself. Still, sixty bucks saved is sixty bucks in a recession.
Finally the click and then, “Is this Mr. Baum?”
“Yes, can I help you?”
“Mr. Baum this is Deborah at UAB Hospital. Can you confirm your birth date for me?”
This was it. Had to be. Maintain.
“June 4, 19xx.”
“Thank you, Mr. Baum. Dr. Bynon has asked me to call and say we believe we have a suitable liver and kidney for you.”
Maintain. Look at Anne and try to calm her with your expression even as every nerve ending in your system has jolted into action mode. But you’ve got to maintain. She’ll need that.
The caller began going through her checklist as I grabbed a pen and paper and we were off to the races.
A few questions back and forth and then confirmation of contact numbers: Can we be there by morning? Can we start out now? Take your time but we think surgery will start tomorrow at 1:00 P.M. Now there is a chance there could be a complication…these things happen. But we think this is the one.
Anne had a full grasp now of what was up and she showed that wonderful exterior calm but we both knew the news was racing through her and she was sorting priorities as fast as she could. In the meantime…
Maintain. I’d have to be calm enough for both of us. Heck, the darn suitcase had been packed and by the door since January. Arrangements made at work? Check. Wills and trusts updated? Check. Bills paid three weeks in advance? Check. Family, friends and neighbors on alert? Check, check and check.
“Honeybunch? It’s time for another one of life’s great adventures.”
Pretty brave considering what I was about to go through. Well, we weren’t alone. I knew I could count on Chuck.
This manuscript and another:
The Road to the 2010 US Transplant Games
…will soon be published as one book by Grave Distractions Publications
You must be logged in to post a comment.