In 2021, after my teenage son had been infected by and recovered from COVID-19, he started to exhibit symptoms of "Long COVID." His particular case began with a burning sensation in his legs that became more intense when playing sports. As a highly-competitive high school tennis player, the chronic pain was problematic, and my son, who hoped to play in college, worried that this would be the end of his career.
In the months following the onset of his symptoms, we saw a wide range of different doctors: cardiologists, vascular surgeons, sports medicine specialists, rheumatologists, pediatric and adult neurologists. You name the specialty, we saw them. Over a six month period, my son underwent countless blood draws, two EMGs, two MRIs, and three CT scans. Each scan resulted in a different compact disc (CD), which we were expected to bring with us to each appointment, because each doctor was in a different health system, so they didn't have a way to share imaging between providers. After a few months, we were bringing seven (7) different CDs with us to each appointment.
Then, one provider recommended that we take my son to a specialized midwestern hospital. However, when scheduling the appointment, we were told that we would have to mail them his imaging CDs for the provider to review before we could come in for the appointment.
This presented three pain-points in our patient experience. Pain-point #1 was having to go to the post office and physically mail discs to a provider. Pain-point #2 was the time delay waiting for them to receive and process the discs. And pain-point #3 was that we only had one copy of each CD, so we had to part with the originals, without the comfort or security of backup copies.
So we sent our only copies of the CDs to the hospital, and for eight weeks, it was radio silence. My wife called them to confirm that they had received the CDs and were ready for us to book the appointment. However, unfortunately, this is where pain-point #4 came up. The hospital had received our CDs, but sometime after receiving them, they misplaced them. They literally told my wife,“We don’t know where your son’s imaging went.”
My wife then had to go back to three different local health systems and wait for them to manually burn us new CDs with my son's imaging. She shipped them right away, but a month later, we are still waiting for them to confirm that they received them. In the meantime, my son is still suffering chronic pain, and we have no other leads to pursue when it comes to finding him answers.
We are beyond frustrated, and even disheartened. It shouldn’t be this hard, especially when kids are involved. If we’d been able to use Clearpath instead, any one of the doctors could have easily reviewed my son’s imaging instantly, without the elaborate (and antiquated!) ordeal of shipping discs to providers in other states.
