Kelly Dillner, an advertising representative at 1025 The River in downtown Arkansas City, is waiting on pins and needles for some good news.
Dillner’s son, Doug, is waiting for a double lung transplant after experiencing the rapid onset of a relatively rare disease.
“I keep my bag packed, just so that I am ready when Doug gets the call that he has lungs that are perfect for him,” Kelly Dillner said in an interview late last week. “We could get the call any minute.”
Doug and his wife, Heather, as well as the rest of his family, are anxiously awaiting the much-needed transplant.
“Doug’s wife has been an amazing support to him for 15 years,” Kelly said, and she added that support has not wavered in the face of illness.
Doug regularly updates the story of his journey online as his wait continues. To follow along, “like” his Facebook page at www.facebook.com/dougsjourneytoabreathoffreshair.
Benefit bracelets being sold
While she waits, Kelly Dillner also works to raise funds for Doug and Heather.
“It is very humbling, being on this side of it,” she said. “It’s a big difference.”
Dillner has worked on many fundraising projects in the past, but this is the first time she has needed to do one for her family.
“It is very hard to ask,” she said. “I have asked, because I know that they need the help.”
Dillner and her husband have purchased rubber bracelets and are in the process of selling them.
The bracelets reference a Bible verse, Phillippians 4:13 — “I can do all things through Christ who strengthens me.”
They are being sold for $5 at 1025 The River, which is located at 106 N. Summit St., and all proceeds go directly to Doug’s family.
Art Crawl fundraiser dinners
Some funds have been raised for Doug’s medical expenses, thanks to a LuLaRoe party at which Stephanie Dobbs brought in $1,700 last week.
But there are many more opportunities to help coming up, beginning this week.
On Aug. 30, during the Fifth Thursday Art and Music Crawl in downtown Ark City, Yoly’s Authentic Mexican Cuisine will sell select items.
They include two dinner-sized plates of either chicken tamales or cheese-and-jalapeño tamales, each with beans and rice, for $10 a pair.
Pre-orders must be in by noon Aug. 29 — these can be turned in during the Ark City Farm and Art Market on Aug. 28 or at 1025 The River.
As with the bracelets, all proceeds from this fundraiser will go to Doug’s family.
Other fundraisers planned
The National Foundation for Transplants (NFT) has set up an account for Doug Dillner.
Those who choose to donate can do so by sending a tax-deductible donation the NFT Kansas Transplant Fund, 5350 Poplar Ave. Suite 850, Memphis, TN 38119. If a check is written, it must have “In honor of Douglas Dillner” written on the memo line.
Individuals also can visit www.transplants.org to make a secure donation online.
There will be a potluck lunch Sept. 9, following the morning service at Cavalry Chapel, located at 1001 S. Third St.
Lunch will be followed by worship and prayer and an opportunity to donate to Doug and Heather DIllner.
Kelly Dillner also is selling tickets to another upcoming fundraiser event that feature a meal, live auction and entertainment.
It will take place Sept. 15 at Chestnut Avenue Venue, located at 3120 E. Chestnut Ave. in Parkerfield.
Donations for the auction can be dropped off at 1025 The River. Tickets to the Sept. 15 event can be purchased there, too.
The story begins
Doug Dillner’s journey started last December, when he was with his family, attending a holiday function.
The walk from his parents’ cabin to another cabin less than a mile away left him nearly breathless.
“We took him in the golf cart back to our cabin,” said Kelly Dillner.
After a breathing treatment, Doug seemed to recover, but at that point, no one knew what was happening.
“The next day, we went over to the candy store in Dexter,” Kelly said. “He was okay until they fired up the burners.”
Despite the glass wall between the sales floor and kitchen, she said Doug could tell the oxygen level in the room had changed.
“He could tell when it happened,” she said. “I told him that he had to go to the doctor.”
Learning a diagnosis
Doug Dillner did not go to the doctor immediately, but instead waited until after the Christmas and New Year’s Day holidays.
“(Doug) never wants to inconvenience anyone,” Kelly Dillner said of her son. “That’s what he thinks of — what’s better for everyone else.”
By the end of February, a biopsy sent to the Mayo Clinic had diagnosed Doug with airway fibrosis interstitial pneumonia.
The source of his disease is unclear and the medical professionals could find no clear cause.
It generally is caused by some kind of interaction with asbestos or chemicals, but neither could be found in his life experience.
Since April, Doug has lost 44 pounds, most of which has been due to the stress his body is under by just trying to take in oxygen.
He is reliant on oxygen tanks at this point and will be until his surgery.
No stranger to health problems
Around the beginning of April, the Dillners were at an Oklahoma City hospital for intensive testing to determine his allocation score.
When he was born, Doug Dillner had four holes in his heart that had to be fixed.
“At five months and (at) 13 months, he had surgery,” said Kelly Dillner. “At 5, he had chicken pox that caused nerve damage.”
Doug has worn hearing aids ever since.
“About eight years ago, he started losing his peripheral vision,” she added. “He’s no stranger to medical oddities.”
But because of the severity of his newest condition, Doug’s allocation score is 84 — which ranks among the lowest 5 percent in the nation.
By way of comparison, the normal high mark is 70.
Obstacles in the way
Initially, the hospital referred Doug Dillner to Dallas, because a hospital there has a cardiac specialist on hand.
The Dillner family made two or three trips to Dallas for testing, but was rejected from that program three weeks ago.
“The reason they rejected him was not because he wouldn’t make it through the surgery,” said Kelly Dillner.
“They said that the medicines that he would be on after could — not would — make his vision and hearing loss worse.”
She said people have told her they could sue the hospital for discrimination against a disabled person.
“First of all, we’re not that way. Secondly, God has a plan,” Kelly said.
The first thing Doug said to the hospital after he received the call was, “Don’t you think I would rather live?”
She said the medical center apologized, but nothing was to change.
A wave of hope
Kelly Dillner said she called the coordinator in Oklahoma City, but no one at that facility could fathom why Doug would have been rejected.
“I knew without it, I wouldn’t have him in six months,” she said. “So I was a mess.”
Fortunately, the family was able to get an appointment in Oklahoma City.
On the way up to the room where the appointment was to take place, there was a doctor on the elevator with the family.
Kelly said the doctor seemed like a fun guy, chatting with the other people on the elevator and having a good time.
“When we got off the elevator, he said, ‘Are you coming in here?’ Heather said, ‘I’m not sure where I’m going,’” Kelly remembered.
“And he said, ‘No, you’re coming in here. You’re coming to see me. I recognized you.’”
The doctor told Dillners that his staff had an extensive meeting about Doug’s care the day before.
He wanted to see where the incisions were from Doug’s past surgeries.
“He said, ‘We’re going to get you lungs.’ And it was like a wave… We didn’t know what we were going to have,” Kelly said.
In that short time between meeting with this doctor and a meeting with a financial adviser, the family met a woman who asked if she could pray with them.
“She said, ‘I just feel led by God to come over and pray with you,’” Kelly said.
The cost of care
Doug Dillner was admitted last week to the Oklahoma City hospital, where he will stay until he receives his new lungs.
But the family is not blind to reality — in order for Doug to live, someone else will have to die.
“He said, ‘I pray that whoever it is, is a believer (in God). That way, it’s a win-win,’” said Kelly Dillner.
“It gets overwhelming when you think about what has to happen (for him to be healthy).”
Doug has to wait for a pair of lungs that will suit him best. In the meantime, he remains in the hospital for 24-7 monitoring and care.
“Whatever the answer is, God’s in control,” Kelly said.
The expenses Doug and Heather will have to deal with are huge.
In addition to keeping up their own home in Wichita, they will have to rent an apartment in Oklahoma.
But Heather only has one week of paid time off left.
“The average cost of a double lung transplant is $1.19 million, and that is just … that doesn’t include anything after,” Kelly said.
Additional medicines are likely to cost $3,000 to $6,000 per month.
A long road ahead
After the transplant, Doug will need physical therapy and monitoring to ensure his body does not reject the new organs. Recovery will take time.
However, his body does produces an antibody that fights the anti-rejection gene, which has potential to lower his risk of organ rejection.
There are many things Doug no longer will get to do after the transplant. For example, one of his favorite foods — sushi — will not be allowed.
For now, Heather remains in Wichita, working, until the call comes in that there are lungs ready for Doug.
Other family members are taking turns by spending time with Doug as they are able.
“Doug’s faith through this whole thing has been amazing,” said Kelly Dillner.
The family’s No. 1 request is for prayer — for strength for Doug, for his surgeons and medical team, and for the family of the eventual donor.