Join me for the latest installment of what’s happenin’ to the Mama Bear (85) through the modern sick-maintenance system that is Henry Ford Health System. My journals have been following the services needed by my mom starting two years ago when she was prescribed hemodialysis for her kidney condition:
So the latest lowdown on Mom’s ‘sick-care’ situation has her not out of the woods yet. We were hopeful after III, especially having spent time to know what’s what in the meds, and the exact whens to take ’em. The rest I learn just how much time and energy it takes to care for someone riding into their sunset years.
From the letter to friends and family:
Many of you have been aware of mom’s previous visit to the hospital after suffering a mild heart attack… 10/6/11 on her 85th birthday no less! That was an adventure she certainly didn’t want to repeat, and now thinking back the main result of that visit was to add a med (Cardevilol) to bring what appeared to be an occasional elevated, fibrillated heartbeat—that can lead to pulmonary edema and all the rest—under control.
Except for an issue back then where, after dialysis, she passed out as I was going to get the car (and had to be recycled through emergency, yikes!), we both thought she was in the clear. We got her meds hammered flat and I made sure she was taking them on schedule.
She seemed to be doing all right, though she still had occasional bouts of labored breathing for minor exertions. On Monday morning, 10/31/11, she awoke to breathing difficulty that seemed to accompany an increased frequency of feeling she needed to evacuate her bowels [Geez, I’m starting to sound like Dr. Kildare; turns out this intestinal deal was a separate issue having to do with getting the incorrect generic phosphorus-binder medication] But this time she was also starting to gasp for breath and I called EMS again. Back to Henry Ford West Bloomfield Emergency.
In terms of handling such deals in the future, I learned a lot. In emergency, after an hour or so of the normal procedures, ER Boy Doctor (he was good) gave her a nitro-glycerin tablet under the tongue. In a heartbeat, her BP came to normal, her breathing became okay without oxygen, and in general all seemed well. We had been prescribed the nitro on the 10/6 visit, but I really didn’t know when to use it; now I do.
After she was admitted they dialyzed her, then the cardiologist spoke with us the next day, a Dr. G. He proposed a heart cauterization w/angiogram to discover whether any vascular issues exist on the heart muscle itself. We said sure. Next morning (Wednesday) he did the procedure: good news and bad news: Good: her heart vessels are clean and green, outstanding for 85. Bad: she has cardiomyopathy, a ‘weak heart.’
Most of us have about 60% pumping percentage—if 100 ml comes in to the heart 60 ml comes out. Mom’s heart is pumping lower than 40, even down toward 20%. Mom’s is also diagnosed w/ paroxysmal atrial fibrillation, meaning it comes and goes. The heart problems are caused ultimately by the kidney disease. Bottom line, the afib and weak heart lead to fluid buildup in the lungs and then potentially congestive heart failure.
G and the attending physician R are genuinely optimistic, that the condition can be managed by meds: chiefly an ACE inhibitor and Cardevilol. They’re frank about her age and condition. G says, “Just being 85 means the chances you die within the year are considerable.” But he was majorly impressed with her heart vessels: “If my heart looks that good at 85, I’m going to be pissed I didn’t eat more T-bone steaks with all the fixins.” And aside from the weakened heart, all the indicators are +. So quality-of-life years: three to five, five to ten? Who knows. All systems are go, just old (then a few words on how she’d love to hear from people, etc.).
Lessons Learned This Time
Over the previous three occasions, I’ve tended to climb up the ol’ wazoo of Mama Sick Care—’Henry Ford Health System‘ (HFHS) version—railing against the two major problems I see:
- Communication—establishing a valid single point of contact inside the system with the care receiver or their advocate. As my mom goes through the system, she and I need to know what is happening, why, and be given the complete wherewithal to make the ultimate decisions.
- Connection—closely related to communication, having a ‘one-who-cares’ and stays in constant touch with the patient. We need to make sure that the assembly-line process of handing off the patient to a series of specialists has an “ombudsman” (someone within the system who coadvocates for the patient and has physician-level sayso).
This time around I give HFHS an ‘A’ in both these fundamental categories. At the physician level, accompanied generally by nursing staff, we were well informed and respected at all steps. I give G, the cardiology specialist, special snaps for his availability, then his unsurpassed energy, enthusiasm, and competence. The attending physician, R, also made a point of getting in touch with me (squeaky-wheel advocate of longstanding) and, what is new, giving us a) a clean and clear table of medications and b) contacting Henry Ford Home Care, a nursing monitoring service that is certainly going to be worth its weight in anxiety-filled nights: “What do I do next time Mom isn’t breathing well, call the primary care doctor during office hours and set up an appointment, or dial 911 for emergency?”
The caveat: Modern sick care, particularly for those whose core health is waning as in Mom’s case, is still tunnel visioned. Both Dr. R and Mom’s primary care doctor F, both men in their 25s-35s, seem to think all the advanced nutritional supplements in the world today are but placebos. Never mind the MDs, PhDs, and clinical studies showing a natural supplement promotes core health: in their power-drug world, the drug studies are compelling. More like compulsive. Here’s the common sense they need to be reminded of, daily, from a strong advocate: Every drug has x side effects and y interactions with other drugs: When you get much beyond three drugs, the permutations of effects and interactions become GINORMOUS, a handful of which will kill. After 3-4 power drugs even the smartest new Ben Casey alchemist on staff is playing Russian Roulette… with the gun pointed at the patient. You gotta learn when to say no.
 This has become my preferred way to handle singular gender pronouns. Rather than be a holdout on the masculine form (which is technically and classically correct) and be charged as sexist or produce awkward formulations of the pronoun (he/she, him/her, his/her), I’m just using the third person plural pronoun (they, them, their) as third person singular. No easy solution, but it’s not awkward, and most people do not understand the distinction anyway.
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