There’s a silver lining in the dark clouds. There’s a rainbow at some point. Yuri is coming through this latest attack of a Monster that caught us off guard but is now under control. We sensed something was wrong several weeks ago during the height of the pollen count. Neither one of us had allergies so it was difficult to call it such. Having to wait for a doctor’s appointment, I relied on information from friends who suffer terribly and on over-the-counter medications to alleviate the symptoms along with conversations with our pharmacist who has first-hand experience as well.
The point is the doctor’s office made a medical assessment that Yuri is “standing and breathing” and therefore can wait for hours while this inflammation rages through his body like a wildfire. In the hospital, diagnosis, discussions, and decisions took too long even after knowing that Yuri has been diagnosed and treated for this autoimmune disease that by all counts is still incurable, but is treatable. A possibility of worse consequences the longer the wait, so when another tell-tale sign appeared on Thursday, I knew we had very little time before it takes over with a vengeance.
By the end of the week, on Friday, Yuri did get the powerful drug that helped him get through this ordeal a year ago. There’s a better understanding of this Monster and the new technology of plasma exchange (taking out the antibodies bombarding his own system) is helping him get through what looked very dire on Monday. On Wednesday, his system righted itself on the turbulent seas because we have been working on getting him physically stronger over the many months of rehab and recovery. Careful considerations of his recent medical history and my concerns made it possible to find the right balance. Integrative medicine with a purpose.
A month ago, Yuri asked me if I thought he has recovered. I said, not yet. He agreed. But we’re getting there. And we were. Definitely, a setback because he’s been practicing and getting his chops back, but thankfully the ICU team has seen worse cases than his in recent times and anticipated what the next steps are to be taken. Good news is doctors are optimistic about his recovery from this bout and will be working on getting him off the vent this weekend. He is alert and communicates with me – knowing that I am there with the info about everything that is being done for him.
While our PCP acknowledged that her frontline dropped the ball, we agree on the fact that such vital information, for what some describe as a rare occurrence, must be made available for health practitioners to understand there are more things happening to people who don’t necessarily wear it on their sleeves or plastered across their foreheads. “Standing and breathing” cannot be the criteria for a medical receptionist who decides when we are able to see the doctor or in desperate need of medical intervention before heading to the ER. And the admin in ERs doesn’t always ask the pertinent question that directly affects a potentially life-threatening situation. Doing their best is not always the best practice. The “powers that be” must take this crisis seriously and make the appropriate changes for better emergency care. That’s my soapbox for now. At least there’s light at the end of the tunnel and it’s not a train. Staying positive. Keeping the faith.
photo credit: Petrusia Paslawsky
