In reviewing my posts, I realized that there isn’t a post explaining why at 38-years of age my heart failed, and ultimately, died. So, here’s the down and dirty, bullet point backstory: 1978: diagnose with Ewing’s sarcoma, a soft tissue cancer; I was 8- years-old in the third grade My parents were not given much … Continue reading Heart Failure: the Backstory
Symptoms, swabs, and false negatives led to my extroverted self being quarantined in our guest room for a few too many days at the end of March. On Tuesday 3/24, I developed a scratchy throat followed in short order by a temperature of 100.2F which scored me a ticket to get swabbed for COVID19. Three … Continue reading Symptoms, Swabs, and False Negatives: an Update
There is nothing quite like a globetrotting virus completely unknown to the human body and invisible to the naked eye to evoke feelings of exposure, vulnerability, uncertainty, anxiety, and fear of the unknown. Am I right, or am I am right? I know I am not alone in sitting with these feelings because I understand … Continue reading Vulnerability and a Globetrotting Virus
Today, I am attempting my first EVER Facebook LIVE with a closed group Surviving Survivorship that I recently created in an effort to raise awareness regarding late effects of cancer treatment months, years, even decades out from the end of treatment. If you are an adult survivor of cancer diagnosed from birth up to 39 … Continue reading Late Effects: Anxiety, Depression, & PTSD
I recently watched Suleika Jaouad’s TEDtalk and so much of what she said resonated with me not so much as a childhood cancer survivor but as heart failure [and] transplant survivor. She addressed the myths that are played out in social media using adjectives like “untrue”, even “dangerous” as they “erase” the very REAL challenges … Continue reading REALity Check
We used to have a ‘happy dance’ tradition in our family. When we received good news or reached a milestone, we would do a goofy, happy dance together as a family. My husband and I started this in the early years of our marriage and our son delighted in them throughout his preschool, elementary years. … Continue reading Happy Dance
There are lots of things to consider when you’re not in ‘your Kansas’ anymore; med schedules & time zones being 2 of them for me. As a heart transplant recipient, I will take anti-rejection medications every 12 hours sharp for the rest of my life. It’s not a big deal; it’s become part of my … Continue reading Med Schedules & Time Zones
“A journey of a thousand miles begins with one step.” ~Lao Tzu I glanced at the date today and remembered that on this date 11 years ago, I began a journey by taking a single step literally 61 days after my heart transplant. It was a milestone, a red letter, write home about it kind … Continue reading One Step
Yesterday, I had a routine transplant check up which included an office visit with my nurse practitioner and my local transplant cardiologist as well as labs and an echocardiogram (ECHO) which is an ultrasound of the heart to evaluate structural integrity and heart function. Now that I am 11 years out from my transplant, these … Continue reading heartSTRONG
In February 2008 within the confines of the 4 walls of an exam room and a 20-minute not even 8 weeks after my valve surgery, my husband and I were told that my heart was failing. An encounter etched in my memory forever; an encounter characterized by shared disappointment and genuine compassion. After delivering this … Continue reading When the Heart Fails
