“Check this out! I can bend my knee up to my nose!”
We just got back from our scheduled comprehensive clinic visit. My boys are lucky. Even though they both have severe Type A Hemophilia with inhibitors, they are managed well with pro-v treatment every other day. This visit was similar to a regular check-up with no urgent issues or bleeds requiring care. The boys laughed and goofed around, showing off for the physical therapist on how stretchy they were as they twisted themselves into pretzel shapes.
For them, it was just another doctor’s appointment. Their lives don’t revolve around pain, restriction of activity, or midnight ER runs. From their perspective, they’re just like everyone else. They’re also not aware of the ‘behind the scenes’ care that keeps them that way. That credit goes to the coordination between the three ‘P’s; physician, parent and pharmacist.
It sometimes seems a thankless job; as mom I put in unlimited amounts of worry time, order time, prep time and med time. The whining I hear is usually about which brother will get his factor first. I carry on without missing a dose, nonetheless. The clinic is always there for treatment and education, as is the pharmacy who helps support us by looking out for our particular assays and making sure we never go without supplies. Sometimes I forget the very rough and raw first years after diagnosis when we were all re-learning who our child was. But it’s more than evident, especially at these visits, how care teams are affecting lives in such a positive way.
The strides of medicine have opened new doors lately, but because of this team approach a tide is turning. Together with the services we have and the medicine available we are slowly erasing the ‘typical’ life of a person with a bleeding disorder. Gone are the inevitable milestones of crutches, wheelchairs, joint replacements and extensive time lost from school and work. Yes, it still happens but the numbers are greatly reduced compared to previous generations.
For all those who struggle to manage themselves, a family member or a patient, take a moment to acknowledge the good you do every day. The collective efforts of the three ‘P’s offer a chance for those we care about to pursue a happy life. Together we are changing lives.
Originally published for BDAST: Bleeding Disorder Association of the Southern Tier November, 2014