When Pablo L. was born, his parents had no reason to suspect a life-threatening bleeding disorder. Now 26, Pablo shares how he’s been able to reach his greatest achievement: telling his story.
An unexpected diagnosis
It’s been quite a journey. Hemophilia being a genetic disease, there was no reason to think I would have it. That’s why there was so much confusion when they told my parents.
When you know the mother is a carrier, it’s easier to be like, oh, we need to test the son when he’s born. But I didn’t have that reality. Three months into my life, my mom noticed a bunch of bruises on my elbows, my knees. I wasn’t crawling around yet or doing enough to have had that much bruising.
She noticed that I would scratch my face a lot, so she wanted to clip my nails and prevent me from doing that. She got a little bit of skin on one of my nails, and I would not stop bleeding. It was really bad.
My dad was a cop, so he’s always been seen as a tough guy and likes to protect people. He told my mom, “Relax, this is no big deal. We’ll take him to the hospital and they’ll run some tests.”
After 2 weeks, they called my mom and told her that they would prefer for her to come in to receive the news. That’s when they told my parents that I had severe hemophilia.
My parents were like deer in headlights. They didn’t understand. They didn’t have any context. The doctors told them that my life expectancy was going to be 13 years old.
My parents snapped a bit. They had so many questions and looked for answers.
Finding answers — and a community for hemophilia
Right when things seemed hopeless, help arrived.
My grandfather was hired to build a house for a Phoenix-based pastor, and that pastor had an extra house in Phoenix. I still get choked up all these years later, but the pastor took us under his wing and let us stay in that house. That’s when we discovered Arizona Bleeding Disorders.
My parents saw other kids in the hemophilia community – and adults. My dad saw this bigger guy who was 30 years old. He had some weight on him and was playing hockey and living an active lifestyle. My dad just started bawling.
Just seeing that lifestyle — that the elbow pads, the knee pads and the room filled with bubble wrap didn’t have to be my reality — was absolutely huge.
When I was 7 years old, I started going to Camp Honor, a summer camp for kids with hemophilia and other conditions. We as hemophiliacs spend all our time alone. There’s no time in our daily lives where we see other hemophiliacs.
But at camp, you’re able to infuse with other hemophiliacs. All the kids are there mixing their medication, just talking and enjoying the infusion. This is our community. I went to camp 18 years in a row, 6 as a counselor.
A nerve-wracking change in health insurance
As an adult, Pablo had to navigate health insurance — and the unexpected comfort that came when his insurance and pharmacy care changed.
After high school graduation, I wasn’t a minor anymore, so I had to either go to school part time or stop attending school. I had to have a full-time job that had good insurance and the ability for me to get my medication.
Then I had a change of job and a change of insurance. That was pretty frightening. I was feeling very uneasy about it because I had someone I trusted.
But Optum® Infusion Pharmacy did everything above and beyond what I could possibly have hoped for. I’m a busy person as a new father, and we have a puppy as well. It’s hard for me to (remember to) call Optum and have my stuff ordered. It’s nice to have the team reach out to me — they work around my schedule.
It’s been great to have that support if I get busy. I didn’t want to switch, but I really love that when I did switch, I felt absolutely comfortable and at home.
Pharmacy care with a human touch
For Pablo, pharmacy care is about more than just delivering medication. It’s about the human touch.
It's nice to have a team that reminds me and grounds me when I need to be. When it comes to a pharmacy, one can be scared, but if you give Optum Infusion Pharmacy the chance, they’re going to go above and beyond.
They always reach out to me, and even if I don’t answer, they’ll call again because they need to make sure we are taken care of.
They’ve made me feel very welcomed.
It’s personable. You know them, and they know you. They ask about your family — it’s not just about hemophilia. It’s great every time I’m out with my family and I see my Optum infusion patient liaison Rosie out and about.
My greatest achievement
My birthday was in January, our church wedding was on February 14, we have our daughter and our puppy. Life has been so, so busy.
It still makes me emotional just grasping the whole situation. For all those things to happen, for it all to fall into place … this is my greatest achievement, just being able to share our story. Me and my family.