My life changed forever on July 2, 1998. This day will forever be etched in my soul. Looking back, most of that day and the days that followed were a complete blur. I lost my sister that day. She was previously healthy with her entire life ahead of her. Looking back now, Jenny saved my life and the life of many others in my family. Once Jenny passed away, doctors decided to run some tests on our family. Almost all of us tested positive for Protein S Deficiency. Some of them with a history of blood clots and some, like me, without.
In June of 2004 I gave birth to my first child, a son. Two months after having my son I felt like I had pulled a muscle in my shoulder. I went to the doctor and he thought it was from carrying my son, in his infant seat around with that arm. That day I went to work. I worked at a pharmacy when half way through my shift I bent down to get a drug and felt the most excruciating pain in my chest. I couldn’t take a deep breath, the pain would not stop. A trip to the ER proved that I had a blood clot in my lung. I was on Coumadin when I clotted. I spent days in the ICU not able to see my newborn son. I had an 8×10 picture of him on my bedside table. He is the one that kept me going. I HAD to be here to be his mother! Needless to say, I’m still here and able to advocate for those suffering from blood clotting disorders.
Since I had “failed” Coumadin, my only realistic option was Lovenox. I stayed on that for 4 years, twice daily….hoping and praying that I didn’t “fail” Lovenox as well. After being told my entire life that I would never be able to get pregnant, we were elated to find out that we were pregnant with our second child. What a true blessing! To be told I would NEVER have children to being pregnant with a second child was a miracle. My pregnancy was uneventful although I was high-risk and my husband was deployed to Iraq. Yes, he would miss the birth of his daughter and not meet her until she was 5 months old.
4 years ago my Hematologist recommended that I try Xarelto. After considering all of the information, I decided to take the leap. Things were great for a long time, then it hit me again. That feeling of pain, not being able to catch my breath. We drove to the emergency room. This time I had 14 blood clots in my left lung and 9 in my right lung. I had severely failed Xarelto or for lack of better words, Xarelto definitely failed me. It failed me in so many ways because I thought Xarelto was my “lifeline” to not have to inject twice daily for the rest of my life. Hello Lovenox, we meet again.
After 4 Hematologists, my most recent one really wanted me to give Pradaxa a try, so I am. I am currently still on Pradaxa, being careful not to miss a dose or be late with taking it. I have a beautiful son and daughter who are my life. I want to be around for them.
Knowing that Protein S Deficiency is hereditary, many people in my family have been tested and to date, we’ve lost count as to how many people have it. Previously, I had counted 32. Now, 33 My daughter, who is 8 was recently diagnosed with it and I find myself having to make the decision to start her on Lovenox at only 8 years old. Sometimes education is not always enough and despite the fact that I know she has it, my gut tells me that she needs to be on something because of other medical issues.
My story continues and will continue for the remainder of my life. Protein S Deficiency writes part of your story and you write the rest. The reason why my story does not end here is because I’ve seen too many people lost, limbs lost and lives changed. I refuse to let it rule the life of my 8 year old daughter. I lost a sister (when she was only 21) to it and I won’t lose anyone else. I quite often find myself questioning why God would have taken Jenny away from us. Now, I see it. Even in death, Jenny has saved the lives of so many of our family members just by handing the doctors and our family the information we all needed to be SURVIVORS!