Turning My Mess Into a Message
In 2004 I spent three and a half months — 112 days — in the hospital after being diagnosed with Autoimmune Protein S Deficiency, a rare, acquired form of Protein S deficiency in which the body’s immune system interferes with Protein S.
It Started With Abdominal Pain
Prior to the surgery, I was admitted with abdominal pain.
After multiple tests, doctors had difficulty finding the root cause of my pain.
When they couldn’t find an explanation, my mental health was questioned.
After the Surgery
Ultimately, after the surgery, the pain was in my entire body.
An ultrasound revealed blood clots in my arms, shoulders, and neck.
There were hundreds of failed IVs, PICC lines, and central lines because my veins collapsed.
Begging for Answers
I instinctively knew at a deeply profound level that something was seriously “off” with my body.
It took begging for additional testing to ultimately discover my diagnosis.
Two doctors began to question my mental health and suggested my pain might be psychosomatic.
It was humiliating until the feeling of redemption when I received the diagnosis.
The Diagnosis
During my hospitalization, I also experienced heparin-induced thrombocytopenia (HIT) following my cholecystectomy (gallbladder removal).
The final diagnosis: Autoimmune Protein S Deficiency.
The Question That Changed Everything
Needless to say, it was a terrifying time for me and my family.
Fortunately, after almost a year of healing and countless doctor visits and tests, I was learning how to live with this as my new “norm.”
I was surrounded by an incredible support system and excellent health care.
Yet the thought of “what happens to people who don’t have access to care?” was ever present in my mind.
I decided to turn my mess into a message — and began a career in healthcare fundraising to raise critical funds for anyone in need living with any health condition.
22 Years Later
Over the past 22 years, while I’ve had an amazing career, there have been some clotting scares along the way.
Several deep vein thromboses (DVTs).
Pulmonary emboli.
A hysterectomy due to adenomyosis, a condition affecting the uterine wall, after a high-risk pregnancy.
And a tiny aneurysm currently in my brain stem.
Living With Healthcare PTSD
In full transparency, there is residual healthcare PTSD.
If I do not feel well or have a “symptom,” my brain immediately goes to “Is it a DVT?”
I take every precaution necessary when traveling.
I also am not cavalier if I suspect something is wrong and see my doctors immediately.
Finding Community
For many years I felt like an anomaly.
Doctors would say “I’ve never had a Protein S-deficient patient” or “let me look up more on this.”
The NBCA is helpful to me when I read other patient stories.
While not all are the same, we share the bond of surviving a single or multiple traumatic experiences.
Family Testing
My family, including my son, have been tested more than once and they are all negative.
What NBCA Means to Me
The National Blood Clot Alliance is a constant resource to me and to millions of individuals who live with the shock and trauma that comes from having had a single clotting episode, or living with a diagnosis for the rest of their lives.
I’m deeply grateful for the efforts they take to educate the public and advocate for survivors who often feel overlooked.
My Advice to Others
Do not be shy in being an advocate for yourself when voicing your symptoms.
