BOWDOINHAM

Sometimes it’s too hard to get up and make a sandwich or get a glass of water, so she goes without.

Much of the time, it’s hard to breathe, and she feels like a “bump on a log.”

But now Heather Bailey said she has hope for the future in the form of a double lung transplant. Having been placed on the lung transplant list two years ago with Brigham and Women’s Hospital in Boston, her doctor said she may increase her chances of a transplant if she is also accepted on the lung transplant list at the larger Cleveland Clinic in Cleveland, Ohio.

She will likely be meeting with Cleveland Clinic around the first of the year so it can do its own testing and give an allocation score. It’s not how long you’ve been waiting but how sick you are, she said. Already the clinic told her to try to have $15,000 set aside for travel expenses. If she gets the call that they have lungs for her, they’ll send a plane she has to pay the cost for. After the operation, she’d have to live in Cleveland from three weeks to three months so there is a lot of expense involved, even if she gets the call from Boston.

Bailey, now 48, was 39 when she was diagnosed with Pulmonary Hypertension, caused by a congenital hole in her heart which had gone undetected. Her health has progressively worsened and now she is on oxygen most of the time.

It was spring of 2006, months before her 40th birthday, when Bailey said, “I woke up in the middle of the night and my heart was pounding and I couldn’t catch my breath.”

She went to her primary care doctor and had an EKG; and went to a cardiologist and underwent testing to find she had a congenital hole in her heart, called an atrial septal defect, that had gone undetected. It was July of that year when she was diagnosed with Pulmonary Hypertension, caused by the ASD.

“I have wonderful doctors,” Bailey said. She started seeing Dr. Joel Wirth of Chest Medicine Associates, out of South Portland, and has been with him ever since. Over the years, her condition has worsened and she is taking more and more medication.

For the last four years she’s been on some form of medication, and was taking subcutaneous injections of the hemoglobin, delivered by a needle, which opens the arteries in her lungs so more air can come through. Pulmonary Arterial Hypertension is high pressure in the lungs when the heart is trying to pump blood into the lungs to be oxygenated, the narrowing of the blood vessels build up pressure.

“They didn’t repair the hole in my heart because it acts as a release valve,” Bailey said. “When the pressure’s too high, the blood shunts across to the left heart and then gets redistributed through my body unoxygenated.”

The medication when injected would be very painful and eventually she was in pain all the time from the shots. The medication was also pooling in her system, triggering some trips to the emergency room, “and it was scary.”

She now takes the medication intravenously, which she said “brought me back to life.” There was a fear she could form a blood clot from the intravenous, that could go to her heart and cause a heart attack or stroke. She suffered a mild heart attack this past spring and is on blood thinners to help avoid blood clots. She spends much of her time often getting medical records from one medical office to another and ordering medicines.

Depressed after her diagnosis, Bailey started taking horse riding lessons, which helped bring her out of the dumps, she said. The barn, Gray’s Equestrian Training, has planned a benefit Saturday. As Bailey has grown increasingly sick, it’s been frustrating watching others do what she dreams of being able to do. When they first started talking about the Cleveland Clinic transplant list, she was impressed that her 15-yearold daughter Kayla Doherty took the initiative to help raise money for transportation costs.

Doherty said it was overwhelming at first as everyone was offering to help but no one was doing anything. She made a status on Facebook asking for ideas about how to raise that kind of money. Multiple people sent her to GoFundMe, where she set up an account and wrote about her mother. In a little over a month, it has raised around $1,600.

“I was surprised that so many people donated, even people that we don’t know,” Doherty said. “You don’t really think how much that can mean to someone,” especially given all the stories out there on GoFundMe. Even $5 donations mean so much.

Bailey and Doherty have been overwhelmed by the outpouring of support they’ve received from the community. Businesses have donated food and raffle items that will all be part of the benefit dinner taking place Saturday night in Brunswick.

Bailey says Doherty was six when she became ill, so most of what she remembers is her mother was sick. Doherty has had to grow up fast and is an old soul, Bailey said. Her daughter and boyfriend, Kerry Henrikson, have been so strong and supportive.

“I dream of running. I dream of jumping. I dream of doing cartwheels,” Bailey said, while at home on the couch in the living room, her daughter beside her.

A transplant is swapping one problem for another, Bailey said. She would have to take medication for the rest of her life, have regular checkups and worry about her body rejecting the lungs, but it is about quality of life and Bailey says she is excited for the surgery.

“It’s a good life,” Bailey said. “I have a good life.”

The transplant gives her a chance to continue it.

There will be information at the benefit Saturday about the New England Organ Bank as well and she urges people to become donors and give the gift of life.

dmoore@timesrecord.com

— What: Benefit for Heather Bailey
— When: Saturday, Nov. 22, 4 to
7:30 p.m.
— Where: Evergreen Senior Citizens Hall, 1 Columbus Drive,
Brunswick
— Cost: By donation
— Featuring: Food, entertainment,
silent auction, raffles and more
— Why: Raising money to help offset travel expenses in preparation of a
double lung transplant
— Donate:
www.gofundme.com/ercse4 or
https://m.helphopelive.org/campaign/5920