It's 9:11 pm as I start this writing. It's been about an hour since I finally heard from Angela's Infectious Disease doctor...day's late. I have a mixed bag of emotions I'm working through at the moment. I just took my sweet wife to bed doing my best to soothe her in all of her tears. Typically she is the strong one; I’ve never seen her cry in such a way.
I've been witness to Angela enduring much pain through the years; fractured bones, numerous surgeries and a deep tenderness for those whose hardships extend far beyond her own. Immediately after her shoulder replacement she kept herself centered for hours, without tears, without any pain management while the hospital staff awaited instructions as to how best deal with the pain block which slipped from its targeted position. Doctors orders were missing…Angela’s pain threshold is so far beyond what most can understand. Tonight though was a different kind of pain.
Angel is at about 65% of herself, she just hasn't bounced back as she normally does. The hip surgery isn't the issue; it's the most recent bought with practitioners and their protocol which has taken the wind from her sails. She's craving to get back into physical therapy, to push herself beyond her range of motion just to reassure herself that she will indeed be able to plant her garden and walk in the grass...something is holding her back this go-around.
A number of days passed since her successful hip surgery when we received a most important call from the Infectious Disease dept at the U of M. An air of ‘emergency’ rushed us into the hospital to control an infection which cultured 6 days after the surgery from material removed from the failed hip joint. We were notified of the find days after the culture was recorded. Infusions of powerful antibiotics were I.V.'d in hopes of controlling a bacterium which may have grown from something other than her tissue; a 50% chance it actually existed. A PICC line was inserted through her arm into an artery to ease accessibility and discomfort of repeated blood draws and drug doses administered into what little veins she has left from years of chemo and other. She was fortunate enough to be able to be sent home for the six weeks worth of antibiotic infusions; to heal in a better environment thanks to home nursing.
Soon, a fever surfaced and she was re-admitted to the hospital for more antibiotics and blood draws. Now her vitals started fluctuating and Lupus kicked in
After a weekend home; a stable environment, Angela’s vitals returned, somewhat reluctant but comparatively better. A follow-up exam by Infectious Disease a few days later was intended to start Angela on a new antibiotic. A few professionals we spoke with declared the new treatment as an "experimental" as did our on-line detective work, yet, Infectious Disease said it was a common treatment. Angela, through her research, found that our insurance didn't cover the drug. Upon sharing this info with I.D., the doc declared that in
Here we just threw away thousands of dollars worth of antibiotics and equipment we were unable to use and yet we were being prescribed more of the same for a now 30% chance of infection...and being prescribed something that is considered an experimental drug of which we will have to pay for....?
We were sent home again, being reassured that we'd receive a plan of action to deal with this supposed infection with a treatment that our insurance would cover...good news for a couple who moved away from their source of income to be treated by one of the top rated hospitals in the country...Good...we'll have a course of action, I will finally be able to work after months without, out of state, while my wife is being cared for by the best of the best. It's was last week when we last heard from Infectious Disease and now, days later, I hear from her… only after an SOS call to a U of M patient advocate at the hospital this afternoon. We had not heard from nor could we reach anyone who was related to our case - Infectious Disease was closed today. Even with this evening's call from the Doctor who initiated this insane experience, I remain unsettled; she was oblivious to the situation and to a course of action.
This is what brings me to this writing. Angela has given every aspect of her life over to the University of Michigan. She even donated her body upon her death to the U of M just so doctors-to-be will get a glimpse of an Angel – eternally infused with hope, surgical scars as maps, organs stressed to the max, metal joints through-out and a heart of solid gold....just so they can learn to be better doctors. Yet here she is, barely able to stand, talk or even cry...with a hose in her vein which no one can do anything with until they have a doctors orders...which we have yet to attain.
What the hell happened???? Angela has donated her life to the hospital. She lives to give to the U of M and here she is crying tears because why? Pain? Fear? Exhaustion? Yes to each...but most of all...because the human element has been left out of her care. She is in a report, a file, somewhere...lost amongst all the other patients who get 15 minutes or less of time from professionals who are in the business of taking care of people…
Wait... For some strange reason, I can't help but feel that the business of taking care of people is really about a health care system that takes care of itself, the insurance companies, Big Pharma and their new and very expensive wonder(?) drugs. Instead of building multi-million dollar atrium's and architectural wonders out of hospitals, the money they invest should go into teaching doctors-to-be how to tend to patients as people rather than patients as line items!
I assume I'll hear from Doctor ID tomorrow....better then than right now......
(as an added note: I am grateful to the many health care professionals who have provided Angela with the care which keeps her giving the best of herself...thank you!)
