A long thread on my fam's experience with COVID over the last few weeks. Dad was infected 1st likely through work (weren't careful on masking & he's in and out of hospital's, doctor offices). (1/17)

Initially thought he had a cold until his company indicated a possible exposure and required testing. He DID NOT want to get tested b/c he thought it would cost $$ and he thought it was pointless (he's part of the group who think it's overblown though at least not a hoax). 2/17

So 1st issue is that my parents had no understanding of whether testing was covered by their MA plan. It is, but they were under the impression they'd have to pay a few hundred dollars. Thankfully company said he couldn't return to work and told them they'd foot the bill. 3/17

For 10 days my dad had a hacking cough and an on and off fever (1-2 days on then all good then back again). When I learned they had COVID, I sent them a Pulse oximeter b/c my medical friends have told me over and over that O2 levels are a key issue especially w/ older folks. 4/17

Pulse oximeter got there on a Sunday and all #s were fine. Dad felt great on Monday thought he was getting better. Then on Tuesday his O2 levels were 85 and he had labored breathing. 5/17

Mom calls me (of course) not sure what to do. Since I'm not a medical pro, I tell her to call PCP, since they know his full medical history and will know if he needs the hospital. Not surprising they say go to the ED. 6/17

After talking to PCP, O2 levels slightly improve, so mom immediately asks if they still need to go to ED. The answer is YES! Again, my parents were worried about $$ of a hospital visit and didn't want to believe how serious COVID could be. 7/17

So now to the good, bad, ugly of hospital stuff. My parents don't live in a suburb in PA, not rural. Bad: the hospital was completely not setup for COVID intake. They barely let mom say goodbye b/f they kicked her out, even though dad was suffering confusion and was very weak. 8

We were lucky my dad had been to this hospital at some point b/c they had his medical records but they weren't up to date. They had none of his updated med list (he had diabetes and takes a bunch), luckily my mom was able to toss a handwritten list at them. 9/17

But they at least had mom as his emergency contact. No info on how to get updates and dad forgot his cell and really wasn't in a mental state to know how to use it anyways. So that's when panic starts for mom. She's kicked out w/ no info on what's going to happen. 10/17

Good: once I could find the # for the ED they were happy to give me info over the phone w/o jumping through HIPAA hoops. I was prepared to threaten and remind that HIPAA enforcement is suspended but it was unnecessary. In this scenario that was key to calming mom. 11/17

Ugly: the hospital ignored my dad's med list and put him on a totally different set of diabetes meds while also starting him on all of the COVID meds. They ended up giving him a med he hasn't takin in 15 years b/c he has a bad reaction to it. And you guess it, bad reaction. 12/17

The med info and allergy info wasn't in his med record, and they clearly didn't look for data elsewhere (dad was getting care in the VA 15 years ago, so VISTA, so the info on the bad med should have been available). 13/17

Ugly: both parents were so worried about the $$ of the hospital stay and meds. I used google to learn that their MA plan is waiving all fees, but no one told them that at any point. Added stress to the situation and for others may have prevented going to hospital at all. 14/17

Best: b/c we knew to watch the O2 levels we got him into the ED w/ oxygen and meds early which made a huge difference. Total time in the hospital was 5 days & now finishing recovery at home w/ mom who still has COVID including fever. But this could have been so much worse. 15/17

Lessons learned: 1) take COVID seriously and don't worry about $$, 2) payers need to provide better info to their members (maybe send a letter) on cost, 3) interop falls apart in an emergency when providers are overtaxed, 4) have your emergency contacts listed everywhere 16/17

and 5) keep beating the drum w/ family and friends w/ facts about COVID. If I hadn't pushed my parents and shared the info I had, we'd be in a very different place right now. It's frustrating but worth it to beat the drum. 17/17