When I was 13, my whole world changed. What should have come as a relief after waiting for “mine” to finally come- it was nothing as I heard it was like. I quickly found myself layering towels on top of trash bags on my mattress just so my mom wouldn’t get upset my mattress looked like a horror movie set. My backpack was filled to the brim with supplies and still it wasn’t enough to get me home without clothing changes and multiple trips to the bathroom (and getting ridiculed by my teachers.) But, no one had told me changing a mom sized pad and tampon every 15 minutes wasn’t ok. No one ever did. I just thought being a woman really sucked. And I wanted no one to worry or to know.
During my third cycle, my mom noticed I was going through way too many products. I am naturally pale, but she noticed my lips were nearly white. She asked how I felt and I replied “I see stars and lots of black when I stand up and I am just tired.” I was also in the process of changing my bedding. My mom took me to my doctor that day. Then from there straight to the ER. Then a majorly failed surgicutt bleeding time test sent me to the children’s hospital. There, I began to deteriorate and received massive transfusions. No diagnosis, no answers. Just struggling to find a solution.
Eventually it all slowed down enough to where I could go home. Plans were made for testing for my mom and sister since I didn’t have my own blood for a while (in a sense.) Testing showed my mom and sister had Type 1 vWD, I still had no answers. Periods “suppressed”, breakthrough bleeding, GYN says this, hematologist says that. And so on. I was suffering and no one cared because I didn’t have a diagnosis and piggybacked off of my sister and mom’s- and they didn’t even bleed like I did.
Once I was 18 and trying to go to college, I quit going to the doctor. I quit taking my birth control. I quit updating my hemophilia nurse with pictures of sea creature like blood clots because she didn’t believe me that I was bleeding that much-and not dead.
I got pregnant. I had to quit school. I got pregnant again. Subchorionic hemorrhages. Both births were not good. No epidurals because I could bleed into my epidural space. Blood clots evacuated. The whole postpartum hemorrhage kit. Blood.
Then it came time for my nursing school physical. My HGB was low enough to require three transfusions that day. Immediately I was referred to a hematologist who asked why I didn’t follow with someone like him if I had a history of this. So I explained my story, as I have so many times. I lost hope. I thought I was crazy and that maybe what happened never really happened. I ignored how I felt because I had to get through everything for my little girls. And he said “I will help you. I believe you. This is in your medical records. You will have a better quality of life.” And so, I finished nursing school. I became an RN.
I will never forget that I have many heroes I will never know. I have worked in ICU’s through a pandemic, I have worked in burn units, I have worked in EMS. Now, I work for the same blood bank that saved my life countless times. I even have been able to see my old hem/onc Peds nurse from 18 years ago who inspired me and showed me how to love strangers. I treat people’s blood every day.
I had a hysterectomy after my third daughter. My doctor didn’t really make it a choice. It has been the best thing I have ever done. Yes, I am 31. But it bore me three jewels and a whole lot of suffering.
My daughters have vWD. My mom, sister, and brother. I, somehow, do not. But, I do have a platelet function disorder. I just got that diagnosis two weeks ago.
Teach your girls what is normal. Don’t let them neglect themselves. And, as a RN myself, take your role as an advocate for your patients to heart. It isn’t a crime to just want to be able to sit in a lecture hall without flooding your pants. When someone asks for “HELP”, that is a cry to be closer to something sustainable.
It may all be a bloody mess, but in the end it gives you some struggle, helps you find what you’re really made of, and might even give you a purpose.
