BELOIT - Bob Daniels knows he's living on borrowed time, but the thought of just a few healthy days with his family is enough to keep him going in his nearly-lifelong battle with Crohn's disease.
This week Daniels is getting medical tests in hopes of being approved for a transplant of the kidney, liver, pancreas and small and large intestine. It's a rare transplant which, if approved, will be done in Omaha, Nebraska.
"They take out your pancreas, liver and kidneys because there is much less of a rejection rate if they all are transplanted at the same time. One organ won't affect the other organ as much," Daniels said.
Daniels is at stage 3 kidney failure because of all the antibiotics and treatments he is on and has been in and out of palliative and Hospice care.
"He's been close to death many times and has always rallied and had a positive attitude no matter what. He's never given up and was always there for his kids," sister Jeanie DeLong said.
Daniels said Nebraska Medicine does about 15 of the bowel transplants a year, with a 79.5% success rate. Daniels said he will be in the hospital for a minimum of two months and will need to stay in Nebraska for three to four months afterward with a caregiver.
The overall estimated cost is $1.15 million for the hospital alone, not counting lodging for he and a caregiver. He is hoping to find an Airbnb or someone who could provide discounted accommodations in the Omaha, Nebraska area.
To help offset his medical expenses, the "Grab Crohn's by the Bowels" event is set for 1 p.m. Nov. 10 at Thirsty Badger, 2683 Prairie Ave. It will feature a variety of meat and basket raffles and more. Donations can also be made at GoFundMe.com or mailed to him at 2007 Shopiere Road.
Having had a total of 14 surgeries on his intestinal tract and less than 10 centimeters left of his bowel remaining, Daniels' health is in serious peril. He's had a heart attack and a litany of infections and complications keeping him in the hospital for much of the year. He spends most of his days hooked up to an IV for nutrition and hydration. With so little bowel remaining, he has to must frequently empty his ostomy which sometimes breaks.
"The transplant will help him regain his quality of life, and hopefully help him become the active man he used to be. It breaks my heart everyday watching him tied to his recliner, and I just hope that this transplant can help bring my dad back," wrote son Christian Daniels in an email to the Daily News.
Daniels is a Beloit Memorial High School graduate of 1984, who has been battling Crohn's disease since age 10.
Daniels, the father of son Christian Daniels and daughter Whitney Daniels, always loved family and his earlier career. He worked a couple jobs as a chef before opening a Dunkin Donuts in Beloit; becoming opening specialist for Dunkin Donuts in the Chicago markets; and finally serving as construction manager for the Midwest district for eight years with Dunkin.
He fondly remembers Dunkin Donuts for being such a supportive employer as he battled to stay employed for as long as possible before going on permanent disability in 2003. One Christmas he recalled a boss going Christmas shopping for his kids. Co-workers were understanding of the sometimes embarrassing moments with an ostomy and its complications.
"It was humiliating beyond what you can imagine," Daniels said.
Despite his challenges, Daniels said he's had some good years during remission. He loves cars and his kids and is hoping for at least one more good trip with them.
If approved for the transplant, Daniels said he will have to be in Nebraska in about six-and-a-half hours, about the time necessary to drive him there.
Doctors told him should be toward the top of the list for receiving the organs because of his age and severity of his condition.
The hope is the transplant will give Daniels time to show his kids appreciation for all their support. One of the best case scenarios for Daniels would be finally having his ostomy removed as well as better health. If it doesn't work out, Daniels said he hopes his story gets the word out that this type of transplant is available.
Daniels' family is helping out with the fundraiser along with his son's girlfriend Chelsea Pacholski, family friend Lisa Rindal and sister-in-law Terry Davies. Daniels said he's received an unimaginable amount of community support. He noted Kelly and Chris Manuel of Prairie Street Brewing Rockford hosted a $1 beer fundraiser, and the Beloit Memorial High School Swim Team along with Coach Dick Vogel has done fundraising for him.
Donations have been made for the upcoming event by the Beloit Club, Rockford Icehogs, The Diamond Center of Janesville and many other businesses.