Tom Earll is Making Memories with Every Breath

When Tom Earll’s daughter, Katy, planned her wedding, she easily chose the venue and the dress. But one heartbreaking fact loomed over it all: Katy didn’t know if her father would live long enough to walk her down the aisle.

“It was very possible that I was going to die and not be at her wedding,” Tom explains. “I kept looking forward to that day. Even at the very end when I was very sick and could hardly get off the couch.”

At that point, Tom had been suffering from idiopathic pulmonary fibrosis for 10 years. He was on the transplant list, but his doctor said he had a maximum of two months to live.

As he lay in bed those last two months with his wife caring for him, Tom found strength in his daughter’s future. He fought to be present and create a memory he and his family could cherish.

Man holding baby

Tom with his grandson.

Years before, when he was first diagnosed, Tom only had to wear oxygen while exercising, but by the time of his daughter’s engagement he had to carry an oxygen concentrator and tanks of oxygen wherever he went. As his conditioned worsened, he needed the concentrator even while sleeping.

Tom’s path to this point was not direct: a misdiagnosis of asthma delayed his treatment for years. It wasn’t until Tom sought the help of pulmonologists at Loyola Medicine that he finally arrived at the correct diagnosis and was put on the transplant list.

You have to be “sick to enough to qualify, but healthy enough to qualify,” Tom says, acknowledging the difficult decisions hospitals must make when deciding who receives a transplant and who doesn’t.
Months passed while Tom waited. Katy’s wedding ticked closer.

Then one night, while Tom rested in bed with his breathing labored, the phone rang. The hospital had a pair of lungs for him. On December 8, 2015 he received a bilateral lung transplant.

On the third morning after his transplant, Tom could see downtown Chicago from his bed. The sun rose, reflecting off the glass buildings. “I sat up and took a deep breath. I got hit with this wave of emotion, and I burst into tears because I realized that this was my new normal,” Tom recalls.

man walks daughter down the aisle

Tom walks Katy down the aisle.

In the end, Tom was able to walk his daughter down the aisle, making a dream come true for them both. “I danced like a fool at her wedding,” he laughs, “and there was always a chair close by so I could sit down and rest.” Because while Tom emphasizes the joy of making new memories without difficulty breathing, his road to recovery is long and some things in his life will never be the same.

“I grew up swimming and boating, and I was in, on or under the water most of my life. I can’t do that anymore. Some days you struggle to win the mental battle. But I always wanted to play the guitar, so instead, I do that now.”

In addition to learning guitar, Tom has taken up a few athletic challenges. Just nine months after his transplant surgery he ran his first 5K, with friends and family cheering from the sidelines in custom t-shirts that said “Tom’s Second Wind.”

This year, he saw that Loyola had created a Hustle Up the Hancock team to benefit the lung disease research supported by the Respiratory Health Association.

That’s how Tom wound up joining “Loyola’s Lung Angels” and practicing for the climb in his local municipal parking garage, which has 4 floors of stairs. He goes up and down 20 times to reach 1600 steps.

Of the race and the rest of his recovery, he says, “I’m going to keep going at a steady pace.”

To support Tom’s efforts, visit his fundraising page.

The Night that Fuels Nicole’s Fight Against Asthma

Nicole Brown was at home when her one-year-old baby Nicholas began to cry. As hours passed and nothing soothed him, Nicole knew that it was time to call the doctor.

A team of two doctors and a nurse quickly realized that Nicholas was struggling to breathe. They began breathing treatments, checked his pulse, and recommended transferring him to a nearby hospital.

After a final breathing treatment, Nicole left for the hospital. “We just made it,” she describes. There, the doctors and nurses uncovered what Nicholas had been trying to tell them – his left lung had collapsed.

Doctors observed him around the clock, unsure what caused the collapse. The possibility of infectious disease meant Nicole wasn’t able to hug or physically comfort her son.

Woman holding baby in hospital with mask and gown on

Nicole holding Nicholas in the PICU

The PICU moved Nicholas to an isolated room to reduce the threat posed by possible infections. The doctors, nurses and Nicole all wore paper gowns and masks whenever they stepped inside.

With protective garments in place, Nicole was allowed to hold Nicholas again – but only while doctors worked to remove the mucus accumulating in his lungs. Nicholas tried to scream, but couldn’t due to his weak breath. Tears streamed down his face as Nicole held him.

“It was awful. I didn’t want him to hurt, but I knew that I needed to keep him still for the doctors to help him,” recalls Nicole.

Tests soon revealed that Nicholas was not infectious and had responded well to the breathing treatments and the suction from his lungs. The doctors were surprised by how quickly Nicholas’ condition improved and finally arrived at his true diagnosis – asthma, a chronic condition that would have to be managed for the rest of his life.

That was eight years ago. Today Nicole, an engineer at Exelon, is preparing to climb her fifth Hustle Up the Hancock and training five times a week. Her son’s asthma and mother’s COPD are at the forefront of her mind.

Boy smiling in a school photo

Nick in a recent school photo

“Nicholas’ asthma has definitely changed my perspective. I grew up with my parents smoking and I thought it was fine.  I also didn’t know that there are different inhalers– maintenance, preventative and rescue.” Nicholas now takes his maintenance inhaler twice a day. His rescue inhaler is there for him when he needs it.

Nicole hopes to have her son waiting for her at the top of the Hancock.

“I think about the people I’m doing it for, knowing that they can’t physically do what I’m doing. That helps push me more.”

Join us and support those affected by asthma and COPD. Donate to Nicole’s climb here.

Help Second Wind Raise Funds Through Hike for Lung Health

Charity Partner Second Wind Assists Lung Transplant Candidates & Recipients

Since the mid-1990s, the average number of lung transplants per year has grown from 400 to over 2,000. Second Wind Lung Transplant Association has worked to improve the quality of life for lung transplant patients, lung surgery candidates, people with related pulmonary concerns and their families, caregivers and friends since 1995.

Gracie Poole is a sweet 9 year-old who likes to dance and loves to learn. She also has a chronic lung disease and is actively waiting for a double lung transplant.

“There’s not that many organizations that provide financial assistance for lung transplant patients,” explains Gracie’s mother, Jennifer Poole. “The people at Second Wind were very encouraging because they were transplant recipients as well. They know that side of it.”

For families like the Poole’s, who relocated from Alabama to Houston in March to wait at Texas Children’s Hospital for Gracie’s lung transplant, the gas and grocery cards provided by Second Wind offered much appreciated support.

Each year, Second Wind is a Hike for Lung Health charity partner to raise funds to provide this kind of assistance to recipients, candidates and their families. With 400 members throughout the world, including the US, Australia, South Africa, the UK and Germany, Second Wind has small but powerful presence. Together, this year’s team has to date raised over $4,500 through Hike for Lung Health. These proceeds go to Second Wind’s Financial Assistance Fund.

Life while on the lung transplant list is unpredictable. Patients can be called in for a transplant at any time. The Poole family must always be ready to head out the door in case lungs become available for Gracie. In addition to financial support, Second Wind tries to be there for recipients as an emotional bedrock.

Cheryl Keeler, Second Wind board president, is a bilateral transplant recipient herself and joined Second Wind after using their helpline to gain background information on transplantation. “In addition to the helpline, we provide connections and information to members through our newsletter, Airways. The Hike for Lung Health provides much needed dollars that we in turn give to families like the Pooles,” Keeler shares.

Currently, Second Wind’s Hike for Lung Health team has 27 people. You can join them – in Chicago on Sunday, September 17 or as a Virtual Walker – to help raise funds to support those, like Gracie, who are waiting for a lung transplant.

The Poole family is grateful for Second Wind’s assistance, as the family needs all help available while they wait for Gracie’s new lungs. As Jennifer noted in a post to Caring Bridge, “Gracie is doing really well which is good. She needs to be the best she can be going into transplant… whenever that may be.”

Hike for Lung Health brings hundreds of people together at Lincoln Park each year to raise awareness and funds for healthy lungs and clean air. The one- or three-mile walk benefits organizations that support lung disease research, education programs and advocacy efforts. This year’s event is being held Sunday, September 17, 2017 and kicks off at 10:00 am. Pre-registration is $15. On the day of the event, registration is $20 and begins onsite at 8:30 am. Find more information about the Hike for Lung Health.

Gracie’s journey is being chronicled by her mother, Jennifer, on their Caring Bridge and Facebook pages.

Matt Cantu Runs for His Family

Matt Cantu has lots of good reasons to run with RHA’s Lung Power Team, but initially, he was worried about fundraising.

Now, he’s over 75% of the way to his $1,500 goal.

His first donors were his wife’s parents. Then, Matt put out a request for donations on social media, but he did more than just copy and paste a link. He made his posts – including the message on his Lung Power Team fundraising page – a testament to his decision to run the Chicago Marathon.

“Make sure you write something about why you care,” Matt advises.

Matt is as green to marathons as he is to the world of fundraising. But his reasons for running are rooted in respect for family and his health. Remembering the why helps him tackle these new challenges.

“If you’re not listening to anything while you run, you play things in your mind. It’s easy to give up until you remember all of the reasons why you’re doing it. It helps you to keep going.”

His reasons include his wife, Megan, who lives with asthma and sarcoidosis. Sarcoidosis involves collections of cells that inflame organs in the body, including the lungs. Four years ago, she struggled to breathe. Her symptoms improved dramatically with medical care and a healthier, more active lifestyle.

Although her experience isn’t typical of many people living with sarcoidosis, and she still has both conditions, she’s running 5Ks now.

When she first invited Matt to join her last year, running was painful, but he continued to work hard to improve his running times. Now Megan – who Matt describes as his best friend – is always there to support him for his races.

Although racing is a fun challenge and a bonding activity for them both, they carry a sense of responsibility to stay healthy for themselves and their family – because Matt also runs in remembrance.

Megan’s grandfather, Robert E. Lundberg, lost his life to lung cancer last June.

“He was a Vietnam Vet; that was something that he was really proud of. He wore his Vietnam hat every day; he walked the lifestyle of a soldier. When that disease took over him… to see his body just go down…” Matt trails off in thought.

Robert was a longtime smoker. Though he battled bravely, his health continued to deteriorate. After witnessing this painful progression, as well as the decisions of other family members to become healthier and quit smoking, Matt decided he wanted to get more fit. He believes that if more people witnessed a loved one go through what Robert did, they would make the same choice.

“He went from a really strong man to someone who couldn’t do anything. It was a sad thing, but I always try to learn from every situation that I’m in.”

Matt personalized his Lung Power Team fundraising approach by sharing Megan and Robert’s stories. This helped his network connect their support to RHA’s efforts, such as helping people quit smoking through Courage to Quit and funding lung cancer research. Many have already joined Matt in making a difference as he prepares to run the Chicago marathon on October 8, 2017.

Visit Matt’s fundraising page to support his goals.

Spots for the Bank of America Chicago Marathon are gone but you can still make every step of your next race count. Join the Lung Power Team for some great benefits. You can help RHA achieve healthy lungs and clean air for all!