My Mom Needs a Double Lung Transplant to Survive
My family has often relied on humor to get through difficult times. For example, it was entirely appropriate -- to us at least -- that when my mom got the news that she would need a double-lung transplant, she created a kicky catchphrase for her ordeal. Yep, she now ends her emails to me with the phrase, "Go lungs!"
My mom was diagnosed with a disease called allergic bronchopulmonary aspergillosis, or ABPA, at the age of fifteen. There is no cure, which means she's lived with ABPA since Nixon was President.
The disease isn't hereditary, and she's the only one in my family who has it. Aspergillus, the fungal culprit that causes it, is unlike most other fungi, viruses or bacteria in that it doesn't invade lung tissue. Instead, inhaled aspergillus spores travel into the lungs where they inhabit the warm, wet environment on the surface. In 1 to 2 percent of asthmatics, an unfortunate group which includes my mom, the spores' presence aggravates the lungs to no end, creating perpetual inflammation and irreversible scarring.
Interestingly -- or not -- these spores are floating around in the air just about everywhere on Earth; I've probably breathed them in without ever knowing.
Despite decades of treatment with asthma and allergy drugs, as well as inflammation-controlling steroids such as prednisone, and the occasional round of antibiotics, my mom's lungs began to deteriorate rapidly about four years ago. Around that time, I visited for the holidays but wasn't prepared to see her connected to a silver oxygen tank and bloated from high doses of steroids. For the first time, I acknowledged a truth that had always existed in the back of my mind: This disease was more than just an annoyance, like, say, a bunion or a cowlick.
There is no humor in a humming oxygen-dispensing machine.
To make matters worse, as I was getting over my initial shock at my mother's appearance, I accidentally stepped on the tubing that was carrying oxygen from the machine into each of her nostrils. My clumsiness is legendary, but with this cringe-worthy stunt, I thought I'd outdone myself. The tubing flew off my mom's face and, to my own horror, skidded across the living room floor. I scrambled to pick it up and sheepishly handed it back to her.
Just then my mom began to laugh and soon all of us -- my sister, brothers, father and I -- were laughing uproariously. What can I say? This is how we handle unbelievable circumstances.
Which is not to say that this whole process has been sunny-side-up. Now that my mom cannot breathe on her own without assistance, the oxygen tank has become a more or less permanent fixture in our family. Even when going out for just a few hours, an 11-pound tank accompanies her. This tank, tucked inside a small black bag with a shoulder strap, attended my brother's high school graduation; it was present on my wedding day.
Soon, my mother may be free of this burden. This Valentine's Day, as other couples exchanged carefully-selected Hallmark greeting cards, my parents arrived at Duke University Medical Center where my mom will undergo a double-lung transplant.
This is a weird sort of limbo: Her surgery is imminent, but the date is not yet set.
First, she must complete several weeks of intense rehabilitation to prepare her body for the physical strain of receiving two foreign objects where her lungs currently reside. I'm not speaking from experience, but from the sound of it, this rehab may very well rival the rigors of NASA astronaut training.
I'm awed by the surgical feat Duke's surgeons will perform, but I must admit, equally stunned by the price tag attached to my mom's surgery and recovery. The going rate in the United States for a gently-used pair of healthy lungs is over $500,000. Sure, insurance will cover many of their bills, but my mom will also require extended hospital stays, requisite doctor's visits and an arm's-length list of medications. These costs add up.
And then there's the small fact that my parents had to relocate to North Carolina temporarily. That adds rent on top of a mortgage, my dad's costs to fly back and forth to the job (in Florida) he still has and needs. When all is said, done and transplanted -- while I cross my fingers and two left feet -- my family will owe thousands of dollars in medical bills.
Of course, it's not just a matter of money -- I wish it were. I'm also anxious that my mom will be substituting one battle for another: Transplant recipients are at constant risk of rejecting their new organs, and this risk will remain for the rest of her life.
Still, my mom is unfailingly optimistic, and it's in my genes to share her positive outlook. Whatever happens, we'll deal with it, and I have no doubt that humor will see us through. For this reason, I've decided that just before my mom is wheeled into the operating room for this life-changing surgery, I'm going to cheer, "Go lungs!"
I think that will make her laugh.
Amber's family is working with the National Foundation for Transplants to help offset the cost of her mom's surgery and recovery. One way of raising money is an old-fashioned email campaign: If you, or someone you know, would like to make a donation, visit here or learn more at Amber's mom's Facebook page: Diane Fields Needs Lungs.
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