If you know me, you may remember Ashley, or have at least heard about her. I often talk about her and mention her in my blogs and my Facebook posts.
Ashley is 34 and a beautiful young woman who was born with a rare genetic disorder, cystic fibrosis (CF). At the age of three months, after recurring episodes where she arrived at the hospital severely dehydrated, she was diagnosed with CF and was expected to live 8 to 16 years. Shocking.
For almost twenty years now, I've been fighting daily to provide Ashley with a normal life. And while I want to make everything happen for her, it is not always possible.
As CF progresses with time, more medical problems and complications surface, and more adjustments are needed. With more time spent in the hospital, six to eight hours of treatment each day, a robust regime of daily workouts and many medications, there is not much time left for anything else. And beyond all of this, the clock is ticking.
I'll admit, the improvements in screening and treatments provide cystic fibrosis patients with a better quality of life and a longer life span than decades before. Today, the average lifespan of a person with CF is mid-to-late 30s. However, some CF patients are living into their 40s and 50s.
The dream of a double lung transplant is hidden in every CF person and his or her family. The thought of more air, relaxed breathing, no treatments, and no mucus stuck in the way, is beyond understanding. It's a dream that often gets thinned by fears of a transplant ordeal and its risks.
On May 16, a day after Ashley turned 34, she was called to come to the hospital as there was a possible donor for her. The rush to the hospital was surreal. Twelve hours later, the final call came and Ashley was rolled on a stretcher to the operating room. As the doors were closed and we were all led to the waiting room, time seemed as if it had stopped. Our medical knowledge didn’t matter anymore. The stress grew, and the night became longer.
The ordeal was long and arduous. Thirteen hours in the OR, days in ICU, and six weeks in the hospital. Complications and fears. Questions and the unknown. A dedicated mother, a loving sister, a stepfather, a stepmother, and a post-kidney-transplant father, who was—and still is, restricted from seeing his transplanted daughter.
Yes, it's a lot. But for a life with no mucus and for the freedom from the long hours of daily treatments of the nebulizer and chest percussions, and the ability to walk around without lugging oxygen…CF patients will pay any price.
Now, at home, I'm still astonished by how quiet it is without the loud, shrieking, constant cough, or the annoying sound of the breathing machine that beats on her chest daily for six long hours. Even the stains of the sodium chloride from her daily respiratory treatments are gone…and the mess, and the trash, syringes, needles, vials... It's all gone.
Still, there is a long way to go.
With daily visits to the hospital where she is under the care of a dedicated medical team, Ashley was able to progress and overcome some of the complications that came with the double lung transplant. Sadly, she is now experiencing rejection and will have to start an aggressive treatment. Hopefully, she’ll get better. Yet, if all goes well, it will be a long time before Ashley is able to work or to get back to a normal life.
Ashley’s journey is beyond words. It is an emotional, mental,and financial burden. Without complication, the cost of a double lung transplant is well over a million dollars. But when complications like rejection occur, you never know what the final bill will be. This leaves Ashley with current bills that are difficult to pay out of her pocket.
Luckily, the Children’s Organ Transplant Association (COTA) established a fund for Ashley. If this fund raises $50,000 for Ashley by September 15, COTA will contribute $5,000, which will be very helpful. While this is a gesture of good will, it cannot cover all the expenses. This fund is managed by an unrelated individual and is restricted to pay off Ashley’s medical bills and daily living expenses.
Dreams are a hope for better. If, and when, they come true, we pray they won't go away, and that we will be able to enjoy the moment….and breathe.
If you wish to read more about Ashley or help her breathe, please visit her page on COTA, or click here. Ashley greatly appreciates any support and help you might consider.
I take a deep breath every day, thanking all my friends for their support and all my devoted readers for their patience. As soon as we get more air, I will be back with my weekly blogs and,hopefully, will be able to publish my next book this year.