Take a deep breath. Exhale.
Now imagine not being able to do that. That’s life these days for Rachelle Ledbetter of Three Rivers.
Rachelle, 57, has lived with pulmonary ailments her entire life. She is currently on the list to receive a double-lung transplant at University of California, San Francisco, Medical Center.
Rachelle was born with asthma. At the age of eight, she lived with her family in Brussels, Belgium, for a year, but the oceanic climate and North Atlantic storm systems seemed to aggravate her breathing problems.
Upon returning to the U.S., Rachelle’s parents took her to a medical facility in St. Louis, Mo., where, at nine years old, she was diagnosed with allergic bronchopulmonary aspergillosis. ABPA is a condition characterized by the hypersensitivity of the immune system to the fungus Aspergillus. It was 1968, and Rachelle was the first child to ever receive this dire diagnosis.
Everyone inhales hundreds of these mold spores per day as they are readily found in soil, decaying leaves, and on trees and plants. Most people’s immune systems kick into high gear to fight any threat posed by the fungus, but Rachelle and others with ABPA have a hypersensitive response that can be life-threatening.
Rachelle carried on with life, attending schools on the eastern seaboard. When she was 23, she packed up her car and headed west. It was just for a visit, or so she thought.
While staying with a friend in California, she met her husband-to-be, Steve Swinney, and she never left.
In 1986, Rachelle and Steve settled in Three Rivers. This is where they raised their two daughters.
For eight years, Rachelle owned the Sequoia Sentinel weekly newspaper (the predecessor to The Kaweah Commonwealth). Since 2003, she has been self-employed with Three Rivers Critter Sitters.
After about a decade in Three Rivers, Rachelle received another devastating diagnosis. After living more than half her life with ABPA, she now had bronchiectasis, a rare secondary infection brought about by the buildup of, and inability to expel, mucus so instead a breeding ground is created for harmful bacteria.
In 2016, Rachelle had seven emergency trips to Kaweah Delta Hospital in Visalia. She was listed for a double-lung transplant at UCSF in November.
This is a serious surgical procedure that will replace Rachelle’s failing lungs with healthy lungs, most likely from a deceased donor.
These days, Rachelle is mostly upbeat and positive. She has a strong religious faith, a devoted family, caring friends, and a bleeding-blue passion for the Los Angeles Dodgers.
Rachelle has her moments of worry and fear, of course. Who wouldn’t? These days, she is dependent upon supplemental oxygen 24 hours a day along with other breathing treatments, medical apparatuses, and medications.
Her daughters, Meaghan, 27, and Sierra, 21, are home, spending time with Mom and assisting greatly with the household tasks that are taken for granted by most but are too taxing for Rachelle to accomplish. Her husband, Steve, is loving, supportive, and has stepped into assist with the care and nurturing of the furry Critter Sitters clients.
“Steve is absolutely my hero,” said Rachelle.
Strict, computerized criteria has to be achieved to receive approval for an organ transplant. And just because the patient qualifies doesn’t mean that the lifesaving organ will ever become available.
There is a ratings scale for prospective transplant recipients. For those in need of lungs, patients receive a score of 1 to 100, with 100 being those in most dire need. Rachelle is currently 35½. This number is dynamic because the longer Rachelle waits, the sicker she will become so her number will move up the scale.
Along with this rating, there is the matter of blood type, age, height and weight, health status, and place of residence (Rachelle will be required to be to the lung transplant center within mere hours). Within these categories, there are a dozen or so candidates currently awaiting the same procedure as Rachelle.
During this epic medical journey, Rachelle became acquainted with another female lung-transplant candidate. Tragically, this friend succumbed to her disease before receiving the procedure that may have saved her life. With this loss, Rachelle received the message loud and clear that not everyone who needs a transplant will get one.
The Ledbetter-Swinney family is well aware of the odds of what they’re up against, but they temper these emotions in order to maintain some semblance of normalcy in day-to-day living.
But Rachelle’s suitcase is packed and everybody keeps their phone within arm’s length, anticipating the call while also trying not to think about it.
“It’s quite surreal, waiting for ‘the call,’” wrote Rachelle on her Facebook page last month, which documents her “Journey to New Lungs.”
She continued, “After three years of contemplating the possibility of a double lung transplant, one year of making the decision, six months of intense medical testing (the likes of several I hope to never undergo again!) and, finally, I’m on the list. For almost three months, I jumped whenever an unidentifiable phone number showed up… Now I’m just living my life, trying to keep those nasty bacterial infections from rearing their ugly heads, stay active, and keep weight on. I may just be surprised when I get the call, forgetting I was ever on the transplant list. Or maybe not!”
FUNDRAISER WILL ASSIST THREE RIVERS WOMAN WITH LUNG TRANSPLANT EXPENSES
In partnership with a nonprofit medical-fundraising organization, Help Hope Live, a Spaghetti Feed will be held for Rachelle Ledbetter on Thursday, March 9, from 3 to 7 p.m., at “Fundraiser Central” in Three Rivers, also known as River View Restaurant.
For just $10, a spaghetti meal can be enjoyed whether eating in or taking out. There will also be a silent auction with an abundance of incredibly generous donations of gifts and services from as near as Three Rivers and as far as the Netherlands.
All funds will be donated to Help Hope Live in Rachelle’s name. Even for patients who have insurance, which Rachelle does, a health crisis can be a financial crisis. With a double-lung transplant, Rachelle can expect to have $60,000 or more of uninsured expenses.
Help Hope Live manages all of the money raised through its medical fundraising websites and pays bills directly, helping patients and their families focus more on their treatment and recovery while providing accountability to donors who can be sure their funds will be spent for the intended purposes.
And because Help Hope Live is a 501(c)(3) nonprofit, the financial support provided to patients and their families does not jeopardize their medical coverage status. Contributions are also tax-deductible to members of the community who support these efforts.
To make a donation, visit here.
Tickets for the Spaghetti Feed fundraiser may be purchased at here or at the event.
ARE YOU AN ORGAN DONOR?
It’s not about “You Only Live Once.” It’s about living two, four, or more times. That’s what being an organ, eye, and tissue donor could mean to a recipient.
If you don’t yet have the pink dot on your California driver’s license or haven’t informed your loved ones of your desire to donate after death, then here are some statistics to assist in this lifesaving decision:
—In the U.S., 118,466 people are awaiting a transplant (as of Thursday, March 2, 2017).
—From January 2016 to January 2017, there were 2,801 transplants performed using 1,323 donors (but about 2.4 million people die per year, of which some could be donors but are not).
—Every 10 minutes someone is added to the national transplant list.
—On average, 22 people die each day waiting for a transplant.
—An organ donor can save 8 lives.
—Kidney is the most transplanted organ, followed by liver. Next is the heart, then lungs. The pancreas and intestine may also be transplanted.
Although there is an increased awareness of organ donation and transplantation, there continues to be a large gap between supply and demand.
To register to save a life or eight by being an organ donor, go here.