BOOP Survivor's Secrets Revealed. Read Dave’s Amazing Story!

“I have fat hands,” Dave told his wife of 34 years during a telephone call from Wisconsin where he was working. A strange observation, but as they had their Thanksgiving dinner together, it was obvious, Dave had fat hands – he looked like a little kid with his dad’s gloves on.

“I have a cough,” Dave told his wife before returning home for Christmas. The cough was constant, day and night, every 18 seconds as his wife timed it. And, a new development – his feet were as cold as ice.

 “I’m not going to work out at the gym today,” he told his wife reluctantly, “I’m worn out from coughing.” Dave was a skydiver, spent two hours in the gym every day doing cardio and strength training, and rode his bike five miles a day. It was January 6, and the first time he ever said these words. It was unsettling to his wife, and unknown to both of them, it would be a very long time before he returned.

Fat hands, cough, cold feet, and some tests – the doctors told him he had lupus and give him prednisone on a Tuesday. Not better, antibiotics and oxygen were added on Friday.

“I can’t breathe,” Dave stammered on Sunday completely out of breath. “Please take me to the hospital.”

“You have pneumonia,” the doctors said. “The antibiotics should be effective soon.”

But they weren’t. Dave worsened.

“What’s going on?” Dave asked in a concerned and weakened voice.

“You don’t appear to have typical infection pneumonia,” the doctors told him. “It must be an inflammation or fibrosing (scar-producing) pneumonia. We need to do a lung biopsy to find out.” The biopsy showed inflammation.

Dave worsened, now completely bedridden with oxygen values decreasing to 53% with minimal activity, not sustainable with life, way below the necessary 90%. He lost weight far beyond his conditioned muscular body could take. The 21st hospital day brought an unbelievable event.

“Take a look at this hospice pamphlet,” the nurse told Dave’s wife as the outlook appeared terminal to the doctors and nurses.

“No way, this is not an option,” she told the nurse. Dave immediately echoed her words with, “No way, I’ve got a long, exciting life to live.”

That evening, Dave was transferred to the University Hospital. He was accosted by the medical staff with every detailed question available, which was a good thing. Did he work with chickens, birds, paints, dyes, chemicals, and did he inhale fumes from newly popped microwave popcorn? He was evaluated for a double lung transplant.

Then, a bright young resident doctor asked him how long he had taken azulfadine? “A long time,” Dave said casually, “for 30 years.” This medication was used for an acute episode of ulcerative colitis 30 years ago. At the time, this was a life-threating inflammatory bowel disease, but that was then and this is now.

The doctors discovered a new clue. Could azulfadine hold the answer?

After a thorough search, it was found that this medication could cause an unusual lung disease called bronchiolitis obliterans organizing pneumonia (BOOP), which is also referred to as “Epler’s pneumonia.”

The drug was stopped immediately, and Dave was treated with CellCept, an experimental anti-inflammatory and immune suppression drug used to treat lung transplant rejections.

It worked! “My breathing is better,” Dave said with a sigh of relief. The huge amounts of oxygen were no longer needed and his shortness of breath slowly improved.

But, after losing 53 pounds, mostly muscle mass, Dave’s weakness was so profound he couldn’t even sit at the side of the bed or lift his arms to pick up a spoon. For an outside observer, it was hard to imagine being so weak, but for Dave, it was monumental. Physical therapy brought terror to Dave’s eyes as he hadn’t sat at the bedside for 21 days! The first day was less than 5 minutes, but quickly, the time expanded from 15 to 30 minutes. During one of these sessions, he developed an arrhythmia that was quickly treated.

The diagnosis of BOOP was confirmed. There was remarkable improvement during the next 15 days, and he was released home. As relapses are common in this setting, he had a minor episode two weeks later, which was treated successfully.

So now it was up to Dave. He had two choices: Take disability through Social Security or exercise his way back to life. He quickly and wisely chose the second. He was going to live life the way he wanted filled with energy and excitement.

“Not on your life,” Dave said with compassion. “The first option is unacceptable. I have skydiving to do!”

Dave returned home in March and began his exercise program by picking things up – starting with a simple thing like the TV remote or the cellphone – too weak to talk at this stage. Then he went to a half-gallon of milk and a gallon – then leg lifts only one inch off the floor. By May, he was able to stand on his own, although in June, he still needed the electric wheel chair to go from their car to his doctor’s appointment at the University Hospital. But, Dave walked the last hallway – to show the world he could do it! The doctors were amazed, especially after telling Dave he’d never walk again. And, furthermore, they’d told him that he had a potentially crippling disease called systemic sclerosis as a complication.

By mid-July Dave was driving, and he went to work fulltime in January. He returned to his beloved gym, working out an hour every day. In November, one year after his brush with death, he went skydiving – the thrill of his new life. He’s still fighting muscle loss, but ongoing strength training will soon return his muscles to his pre-illness condition, which is better than many people half his age. He’s a successful and happy man.

Lessons learned:

1.    Know the medications you’re taking. It can save your life.

2.    Everybody needs an advocate if they’re in the hospital. If Dave didn’t have one, he’d be dead on day 23.

3.    Doctors are people too, find one who will listen and answer your questions. Don’t be afraid to find someone who’ll work hard for you and work together with you. You’re the boss, and you’re in charge of your health.

4.    Don’t give up, EVER! Even now, Dave said he never had a thought of being in grave shape or dying. It never entered his mind that he was so gravely ill. As Dave came through the ER doors at the University Hospital, he was given grade 8 to 9 – grade one was the picture of health and grade 9 meant death before the day was over. It was Dave’s positive persistent attitude that took him from that death sentence to life’s ultimate success.

Story submitted by Dave’s extraordinary wife, Beth Mahlo, Rock Island, Illinois. Edited by Gary R. Epler, M.D., Boston, and author of BOOP: You’re the Boss.