In 2010, our mom, Debbie Miles, was diagnosed with sarcoidosis at age 53. Sarcoidosis is a destructive lung disease, which strikes healthy people for unknown reasons. It results in scarring of the lung tissue and eventually loss of lung function.
While the four of us were growing up, Mom was a stay-at-home mom. With two girls and two boys to keep her busy, she was very involved in our lives and always put us kids before herself. She brought us to our sporting events, girl/boy scouts, clubs, activities, and much more. Whenever our schools needed a parent volunteer for book fairs, art nights, chaperoning field trips, and working sporting event concession stands, she was the first to sign up. When we were all in school full-time, she became a substitute teacher in multiple local school districts. In 2013, she took a job as an educational technician at a school in a neighboring town. She absolutely loved doing what she is passionate about; helping kids learn and grow.
Mom never smoked a day in her life. She lived a healthy lifestyle, yet when she became ill, her life gradually changed. She started cutting walks around town shorter and shorter as she began to lose her breath sooner without knowing why. Eventually, she received a referral to a pulmonologist. After extensive diagnostic testing, including an open-lung biopsy in August 2010, she was diagnosed with sarcoidosis. A few years later, Mom developed an unrelated infection in her lungs called Mycobacterium Avium Complex (MAC), which is a non-contagious “cousin” of tuberculosis. With Mom’s lungs more susceptible to the infection, and with this particular infection being extremely difficult to combat, the treatment involved up to four antibiotics at any time, each of which had significant debilitating side effects.
In June 2016, Mom woke up one morning, couldn’t breathe, and was rushed to the hospital. From that moment on, she was in and out of hospitals in both Maine and Boston. Her health problems began to affect her mentally, and she believed she was on a downward spiral where her health would never improve. She was put on 24/7 oxygen and lost her independence.
Finally, in May 2017, the MAC was successfully treated but not until significant, irreversible lung damage was done. Walking, even around our house, became utterly exhausting. She would completely lose her breath, and even at one-point, lost consciousness and had to be taken by ambulance to Central Maine Medical Center.
Mom’s doctors at Massachusetts General Hospital began discussing the possibility of a double-lung transplant in March of 2017. As scary as this sounded to all of us, Mom finally heard a different word: hope. This was the light at the end of the dark tunnel she had been traveling down. Throughout the summer and fall of 2017, Mom and Dad took many trips to Mass General to see if she was a potential candidate for a transplant.
The motivation for Mom to get a lung transplant increased when she found out she was going to be a grandmother. In January 2018, her first grandchild, Wesley, was born. Whenever she saw him, her eyes would light up! However, while all the pre-transplant testing seemed to be going just fine, Mom woke up struggling to breathe again that same month. She was taken to Central Maine Medical Center and diagnosed with pneumonia. While at the hospital, her condition worsened. Her lungs were unable to expel carbon dioxide and she was transferred to the intensive care unit at CMMC. After weeks of treatment and pre-transplant evaluations, she was able to go home. Finally, on February 6, 2018, after many months of appointments, tests, and waiting, she was added to the New England lung transplant list. At one point, because of the severity of her condition, she became the top candidate for a lung transplant in all of New England.
Shortly after, while a patient at CMMC, Mom received a call from Mass General. A set of lungs matching her criteria was available. She was rushed by ambulance to Mass General, prepped for surgery and prepared herself for the lengthy, life-changing procedure. Just before surgery was to start, it was determined the new lungs were not good and she was sent home. Another one of these “dry runs” occurred a few weeks later and once again she was sent home.
However, on March 24, Mom received a third call and she and Dad headed down to Boston again. This time the new lungs were good and on March 25, 2018, after an 8-hour surgery, Mom received her new lungs!
Right now, Mom is still in Mass General in the post-surgery process where her new lungs are learning to breathe in her body. The recovery from such a significant operation is lengthy. There have been a number of “bumps in the road” but Mom is making progress.
We are looking to raise funds to help with the enormous out-of-pocket expenses for Mom and Dad related to the transplant. This includes deductibles and co-pays for the multiple hospital stays both before and after the transplant, the anti-rejection drugs Mom will need to be on for the rest of her life, travel costs to and from Boston, and the hotel stays for Dad in Boston while Mom is hospitalized throughout her initial recovery, as well as continued travel expenses after Mom is discharged. (Mom and Dad both need to be at the lung transplant clinic sessions two times per week for the first month after discharge and weekly for the following six months.)
Our mom is a loving and kind woman, with a big, warm heart. To see her vibrant personality and physical stamina being taken from her at such a young age is heartbreaking. Mom can’t wait to be able to breathe without the aid of an oxygen tank, walk around the house without worrying if her body has the strength to make it, and finally gain back her independence. This is her chance at getting back the life she used to have.
That’s where you can help! We are setting up this fundraising campaign to help make a difference! Please give what you can and spread the word. All donations will help!
Through Help Hope Live all donations are tax deductible as allowed by current IRS regulations and every dollar donated is another step towards Mom’s new life. We greatly appreciate your love and support.
Thank you,
Allison, Jeff, Kelly and Dan Miles
