Source: The Missourian
Adam Brockmiller will never forget what it was like to take his first breath with his new lungs.
"It felt so good," he said, describing it as refreshing, like drinking a glass of water.
A 26-year-old Union resident, Adam was born with cystic fibrosis and has struggled for years with the effects of the fatal disease. He had a double lung transplant at Barnes-Jewish Hospital Wednesday, Nov. 24.
Adam and his parents, Dane and Joanne, call the transplant their "Thanksgiving miracle," and have no doubt that their youngest son, Jake, who passed away four years ago, played a part in the speediness of Adam's wait for a donor and his recovery.
The Early Years
Adam was born July 3, 1984. Six weeks later his parents learned that he had cystic fibrosis (CF), a disease that causes mucus to build up and clog some of the organs in the body, particularly the lungs and pancreas.
Neither parent knew they carried the gene, but said they knew something was wrong when he was just 2 weeks old.
"His breathing slowed, his heart slowed, he turned blue," Dane said.
"He was losing weight, he was really pale, he wasn't eating," Joanne added.
Adam's CF affects both his pancreas and his lungs. He also has cystic fibrosis-related diabetes.
For the first several years of his life, he was in and out of the hospital. He had to undergo chest therapies including postural drainage, where his parents would clap on his chest to try and break up some of the sticky mucus in their son's lungs.
When he was a newborn, they had to gavage feed him, which involves threading a tube through his nose into his stomach.
When Adam was born in 1984, the average lifespan for someone with cystic fibrosis was about 18. That age has increased to about 37.
Despite the news that their son was sick, the Brockmillers weren't thrown off by CF.
"You don't have a choice," Dane said. "As a loving, caring parent you do everything you can do to take care of your child."
As Adam grew out of infancy, the symptoms of his CF subsided, likely because he was so active.
In high school, he participated in basketball, baseball and track.
"I never knew any different," he said. "I wasn't just going to sit on the sidelines and not give it my all."
Despite feeling pretty well in grade school and high school, Adam spent a good portion of his day dealing with his CF.
In the morning, he would complete a half hour vest treatment, to replace the postural drainage clapping. He would follow that with two 10-minute nebulizers, 13 pills with breakfast, eight pills with lunch, eight pills with dinner and five anytime he would have a snack.
In the evening he would do the same, only because he wasn't getting enough nutrition with the regular medication, he would have to hook up a feeding tube. Five cans of Ensure would be pumped through his body during an eight-hour period while he slept.
When he developed diabetes he also had to add an insulin shot with every meal and two additional shots at night.
After high school, the frequency of Adam's hospital stays increased dramatically.
He would have coughing fits and his blood oxygen level would decline to 88 percent while he was doing nothing to disturb it.
Dane said it was difficult watching his son suffer.
"It's tough when somebody is in pain, coughing so hard and so violent," he said. "We were watching him die."
Dane added that he isn't sure how the family handled all the stress.
"You pray, cry, scream, argue, then you pull it together and help each other out," he said.
Adam lived as normal of a life as possible. He graduated from Union High School in 2002 and went on to the Missouri University of Science and Technology, where he earned a degree in electrical engineering.
He began working as an electrical engineer with Empire District Electric in Joplin.
Adam even had a son, Brayden, on Jan. 27, 2006.
Adam, determined not to "sit on the sidelines," even coached his son's soccer team last season wearing an oxygen mask.
At 4, Brayden can help his dad hook up all of his tubes and equipment.
The frequency in which Adam had to have sinus surgery to scrape out polyps in his sinus cavities increased as he got older. In January, he had his sixth surgery - the fourth in three years.
The Brockmillers have lost count of how many times Adam has been admitted to the hospital, but they estimate it has to be somewhere between 50 and 100 times and would include hundreds of days, if not 1,000.
But things were never as bad as they were at the beginning of this year. It wouldn't be unusual for Adam to have coughing fits that lasted 45 minutes and to cough up a cup of mucus.
Joann said he could barely walk from room to room.
His blood oxygen level was in the low 80s and he was on a continuous bipap machine, which was used to help send oxygen through his body.
"I always knew I was going to die," Adam said. "But I've never been as close to thinking that I was going to die as I was (a few) weeks ago."
Joanne said she wasn't sure how long her son would be able to hold on.
Until recently, Adam was against getting a lung transplant, so the family had never looked into the possibility.
"I was of the opinion that I've used medication enough in life... I thought there might be a boundary that I didn't want to cross," he said. "I had no regrets in life."
As with his whole family, he also missed his brother.
"I was half-way ready to be with my brother," he said. "I didn't want to prolong the inevitable."
Both parents agreed that they supported his decision, whatever it was.
"I didn't want to see him suffer anymore," his dad said.
Adam said he knew this last time getting sick was different from others and, unlike previous times, he probably wouldn't "bounce back."
"I basically had three options," he said. "I could continue what I was doing and keep fighting, come home and quit fighting, or think about a transplant."
Making a Choice
After talking to doctors Daniel Rosenbluth and Elbert Trulock, as well as several transplant patients, Brockmiller said he started leaning toward getting a transplant.
"I finally just decided I wanted to live more," he said. "The ultimatum is there. I'm going to die, but I'm going to be able to spend that much more time with my son."
Adam knows he is not guaranteed that time, because there is always the possibility that his body will reject his new lungs. Because of this, he described getting the transplant as "trading one problem for another."
"I could be right back in the same boat," he said. "I gained time, but I don't know how much."
The human body is designed to fight foreign invaders, which transplanted organs are considered, according to the Cystic Fibrosis Foundation Web site. The immune system will naturally reject the organ, so immunosuppressive drugs are given to stop the rejection. The drugs must be taken every day for the rest of the recipient's life.
The average lifespan of a post-transplant patient is five years, according to Kelly Morris, lung transplant coordinator at Barnes-Jewish Hospital.
"For everyone who has a transplant today, about half will be alive five years later," she said.
After completing rounds of testing and evaluation to see if he was eligible for a transplant, Adam was placed on a transplant waiting list through the United Network for Organ Sharing. The national list prioritizes organ allocation based on severity of illness, length of stay, blood type and geographic location.
According to Barnes-Jewish Hospital lung transplant information online, about 3,100 people in the United States are waiting for a lung.
Circumstances have to be perfect before a transplant can occur, including blood type, tissue type, height and weight of the transplant candidate, size of the donated organ, medical urgency, time on the waiting list and distance between the donor's hospital and the recipient's hospital.
Adam was listed as "active" on the donor list Nov. 23 at 10:30 a.m. Only 20 hours later he was awakened by nurses telling him he had a potential donor.
Transplant recipients in the Barnes-Jewish Hospital program are typically on the waiting list for about six to nine months, Morris said.
Adam was stunned at how fast everything was happening, but said that he wasn't scared. He was ready.
"I heard what they said, and it made sense, sort of," he said. "I said ‘I know you're not mean enough to play a joke like this.' "
He called his dad, who was already en route to the hospital to bring pumpkin bread, and made him turn around to get his mom, his support person.
Because Adam's blood type comprises less than eight percent of the transplant waiting list, and because of the severity of his illness, Adam was at the top of the list, Dane explained.
His lungs were transplanted from a man in North Carolina, but that's all the Brockmillers are allowed to know. Because there was no one closer, Adam was eligible for the lungs.
Adam and his parents agreed that they were excited about the possibility, but also thought about the donor's family, having gone through a tragic unexpected death themselves.
"It's the greatest gift anyone can give, to donate your organs. You are giving new life to a person," Adam said. "I'm thankful God allowed this to happen."
The surgery was performed by Dr. G. Alexander Patterson, cardiothoracic and transplant surgeon on Wednesday, Nov. 24. About 10 hours after finding out he may have a donor, Adam was in surgery.
The entire surgery took only three hours with no complications.
The next thing Adam remembers is eating ice chips nearly 24 hours later.
"I could tell it was so much different already," he said.
Adam joked with his parents that the doctors had "cut his cough out." Before, he would cough violently without a break, and post-surgery, he had to make himself cough to ensure the new lungs were working properly.
Adam's vital signs were better than ever, with his oxygen saturation nearing 100 percent.
The family marveled at how pink his hands were, whereas before they were cold and blue because oxygen couldn't reach them.
The second day after surgery, Adam was up and walking around, and one week after the surgery was performed, he was on his way home.
Now, Adam is in full recovery mode, traveling to the hospital daily to be monitored for rejection problems, exercising, building up stamina and getting back to a normal, though now improved, life.
Adam has traded his lengthy regimen for just a handful of antirejection and immunosuppressive pills, as well as steroids.
Adam looks forward to using his kitchen cabinets for dishes and food - rather than as a pharmacy, and not having to lug around so much medical equipment.
Most of all, he looks forward to keeping up with Brayden.
"I love hearing the excitement of my son telling me that he doesn't have to hear me cough anymore," Adam said.
And of course, the family still relies heavily on their late son's presence.
"Jake is looking down all the time," Adam said. "He's always watching over me."
A fund has been set up in Adam's name through the National Transplant Assistance Fund to help him and his family endure medical costs associated with the transplant.
Even with medical insurance, many of Adam's expenses are not covered by insurance and must be paid out of pocket.
He has substantial uninsured costs such as medical premiums, medication, testing, co-pays, deductibles as well as gas and mileage for daily trips to the hospital for his transplant rehabilitation.
In addition, Adam will be on a lifetime of antirejection medication. Fundraising is essential to the overall success of Adam's transplant.
To donate, visit http://www.ntafund.org/ and search by name or put "lung" in the "type" field and it will go to his page.
To keep up with Adam's progress, visit his blog at www.abtransplant.blogspot.com.
THANK YOU DONATE LIFE AMBASSADOR DAVID HOLLON FOR SENDING US THIS INFORMATION TO BE SHARED WITH OUR READERS. DAVE IS A 2011 DONATE LIFE FLOAT RIDER.