Until I fell ill in February, it had been decades since I'd been in "patient" mode. Now, I have something of a complicated health picture and am dealing with the medical profession on my own behalf constantly.
What's changed over the years? Why do I, who used to work in Medicine in New York, find it such alien(ating) terrain?
There are those who say my native New York doctors and facilities are notoriously more professional and proficient than those here in California. Others say the whole profession has morphed into one in which patients must, much more than ever, concertedly advocate on their own behalves, doctors being less likely to automatically consider themselves accountable to actual patients, due to all the billing/regulatory intermediaries. Radiologists are more likely to rush-read images, and doctors to settle for mere reports without viewing actual films, etc.
I have been struggling with this, having lost the more aggressive insistence that came with the New York territory. I have always counseled the ill, including friends, to clearly assert themselves with medical professionals, and now I find myself in the position to discover how difficult that is to do when ailing. It is far easier said than done, so I'm humbled about it and smell a wildly fertile field in Patient Advocacy/Relations, for those of you seeking new careers.
I spent almost thirty adult years outside Medicine's crosshairs. Needing to avail myself of its services these days, I must mobilize great stores of energy, relearn old skills, learn new systems, and engage new techniques for navigating this terrain, said not-quite-Pollyanna.
Thanking God for the ol' B spirit, plasticity, resilience, equanimity, and cheer.
Yesterday I visited the hospital where I had undergone my ordeal last winter. The following is the text of an email I just sent someone who'd flown 3000 miles to my bedside, telling him about my reunion with the angels who rescued me.
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Don't know if this would interest you at all, but:
Yesterday, I was at [name of hospital]. And I decided to do something while there that I'd thought many times of doing: I went back to all the wards/units where I had been a patient last winter, to see them from the eyes of health, the rooms I'd lain in, and to perhaps thank some of the really outstanding people who had taken care of me. I had the distinct sense that they very, very rarely see the positive results of their dedication - their former patients IRL, walking around in street clothes, with wind in their sails.
First stop: The ICU. I thought of you as I entered its door, imagined you coming in and passing these places, as I had never seen the door myself; I had never seen that front desk. And there was my little alcove/room, just to the left. The whole ICU looked much, much smaller and more crowded than it had felt/appeared to me from my horizontal position on that bed. I instantly remembered nurses I saw there yesterday ---- remembered their names, which blew their minds. There were even hugs and tears - they couldn't believe I looked so good, and they were genuinely grateful I'd come back: It did a LOT for their morale. I specifically asked for Katy, who had been in touch with you by phone. I wanted to thank her for her hand-holding care of me when I was first admitted there, put on the oscillating ventilation. (I don't think you saw that set-up; for hours I was strapped into a jerking/bouncing/vibrating chest-wrapped thing to jostle my ribcage while the oxygen was blasting in through the mask - Katy explained it was to loosen the "cement"-like "fluid" that had filled my lungs.) It was really hellish, but Katy sat there with me, while I begged her to stop it, and she'd say, "Okay, fine. You want us to intubate you? Because if I turn this off, we have no choice."
You know what came back to me?
And this is really why I'm writing this to you.
She was the one who came in and said, "______ is coming from New York. I've spoken to him. His plane arrives at 2 in the afternoon."
So help me, I looked at that clock every several minutes and calculated where in the American skies you were. It was critical to me, somehow, to hang on to that while the waves of wind smacked me in the throat and the vest jostled me hard. I remembered that yesterday. I remembered a lot of things, and, you know? It was psychologically a very healthy thing to have gone back there. I had read on the Internet that that's the case for many, many who spend extended time in Intensive Care through an Emergency admission.
Anyway, I left a note for Katy yesterday (because she's a Night Nurse and wasn't there), on a special "Recognition" card, which they post in their little staff rest area, and everybody looks. Apparently this is a Major Highlight of their work. These ICU angels of mercy are in the business of saving lives, and while they get monetary rewards, their souls really do crave just this sort of recognition. Many of their patients don't recover. The few who come back and show their/our faces, healthy, REALLY encourage them.
After I left there, I did the same at the TICU and the regular ward. I was remembered, and I remembered the names, too! I recognized-in-writing two more absent nurses in the TICU, and followed up with a couple of nurses on the regular ward. One was a male French nurse with whom I had communicated in French when I was first admitted to the regular Medical ward for observation. "You were just coughing and coughing and coughing," he said yesterday. He didn't know - so I told him - that I later went Critical and was transferred to the ICU and was in the hospital another 12 days after he last saw me.
It was a very rich experience for me and gave me a certain amount of closure. I have very, very warm feelings for those people and was told that the nurses I recognized in writing would be thereby recognized by their departments and supervisors. The least I could do.
And, of course, I have warm feelings and deep gratitude for you. You really gave me something priceless by flying out here when you did. The plane was cramped, the ICU was cramped, it wasn't fun, and you must have been scared until I stabilized.
What more can I say?
Love and hugs.
The recent hospitalization has definitely affected my overall outlook profoundly, even with respect to diet / lifestyle. I've faced a "worst case scenario" head-on, and it only confirms me in an easygoing approach.
No sooner did I recover from February's life-threatening ARDS than I found myself being recalled a couple of weeks ago about a suspicious radiologic finding. Then I was quickly worked up via diagnostic radiology and ultrasound, whose results compounded clinician suspicion. The lesion in question had four classic features of malignancy.
Yesterday's biopsy was under ideal conditions, including its being performed at a top-rated US hospital. Slides were prepared a few feet from my head, where the pathologist sat at her microscope and read them. She then delivered the good news.
Throughout the biopsy and the preceding two weeks' workup, I was serene.
1. I have enough of a medical background to know how advanced the technology is and how much of its use is justified by the need to train the personnel who use it! On the less cynical side, there's a necessarily high ratio of healthy patients who must be rendered anxious or apprehensive to those the technology really saves by finding their cancers early. So: Intellectually, I'm hip.
2. February's acute brush with death and day-to-day personal submission to Emergency and Critical medical care accustomed me to being pricked, probed, medicated, turned, transported, ventilated, and discussed by roving schools of clinicians and their acolytes, as well as nurses, aides, therapists and techs. My attitude is a paradoxic combination of exhausted "Yeah, yeah: Do what you have to do," and firm "Give it to me in straight clinical jargon; no 'lay language' for me, thanks," not to mention a very strong faith in God.
One thing I've always appreciated about Peter D'Adamo is his respect for holistic, as opposed to merely biochemical, individuality. He understands that not only diet but one's attitude toward health is unique to one's personhood. Some of us can tolerate more uncertainty, more sickness, more ignorance, than others. Some are more frightened by or intolerant of dysfunction or disability. Some are more scared of death than others are. And all of these factors must be considered when choosing a "compliance-level", because: Compliance with What? is the operative question.
Compliance with the D'Adamo books' recommendations?
Compliance with one's social situation? With one's workstyle or schedule?
Compliance with one's personal distribution of comfort zones?
I daresay the dadamo web forum community is far more concerned with dietary than these other sorts of compliance, necessarily to promulgate that aspect of the teaching. But dietary compliance as a major life preoccupation isn't for everyone or even for most, even in the wake of catastrophic illness – maybe especially under those circumstances! It's the old story of regretting not having told someone you loved him, say, as opposed to having used too much cinnamon. "Living Right" 4 one's bloodtype is not identical to living right for one's soul or spirit.
Emergency and intensive patient-hood often elicits a clearer expression of essence. There's a distillation, a purification, a consequent clarity. Nothing wrong with that. Having emerged from that crucible, the more recent "cancer scare" tested the substrate, and I'm pleased with the result.
In February, I spent two weeks in the hospital – ushered in through the Emergency Room – and eleven days of that in critical care. The month's final week found me at home again, weak and tired. Throughout March, I have slowly crept out of that sudden, unexpected abyss, to re-orient, re-group. After about thirty years as an adult in excellent health under my own "alternative" recognizance, it was quite a shock to take up the identity of Hospital Patient and, then, Outpatient thereafter. I do have a background in Medicine, working for years with doctors, in and out of hospitals. I think this helped immensely; my hospital course was never scary for me.
Convalescence has been more challenging than hospitalization was. I have been visited by six different home healthcare professionals, two different unknown maids, three or four outside contractors and my apartment building's maintenance man a few times. I have taken regular pharmacy deliveries. I've had four appointments with three MDs and been to a laboratory to drop off a specimen. I've also shopped at the supermarket a couple of times, had a couple of friends over for dinner, and returned to work here and there.
In my lifetime, my Standard Operating Procedure has involved amassing tons of scholarship on any and every subject I encounter, and during the past 5 and a half weeks that's been my continued and constant practice. I have studied each drug I'm taking, each drug I took in the hospital (after remembering them!) (and there were many), each procedure I underwent in ER, ICU, TICU and on the ward; various hospital practices and protocols; the Hospitalist specialty; the Intensivist specialty; the history of Intensive Care; ICU nursing, and more. I've of course studied my own disease and conditions - their stages, causes, treatments and prognoses.
During my hospitalization I encountered the whole gamut of career-suitability of various practitioners, from shining examples of professionalism, to those with clearly inappropriate motives for being in health care; from the energetic and thorough to the lazy and disinterested, to the exhausted. As an outpatient and in-home consumer of Home Healthcare services, I've observed the same range.
And now? I enter another phase: No Longer Med-Free. While investigating their possible side-effects and interactions, and correcting the various nutrient-depletions they cause, I'm also physically processing new drugs, monitoring their effects in addition to monitoring vital signs and treating symptoms in non-Rx ways. Plus: I'm also having to make dietary and lifestyle adjustments. In the hospital, it was easier: All I had to do was let other people keep me alive.
We natural-types have to be on guard against disdain of the allopathic system's "Magic Pill" answers when a quick improvement is imperative. In the ICU, this was literally and immediately a matter of Life and Death. At home, while the stakes are less immediate, they are just as serious: The "right" medication can immediately restore function to an exhausted patient who is challenged or failing. Yes - under better circumstances, one has months to compare modalities, to experiment with supplements that are less toxic, and their dosages. For my part, I'm discovering that Rx meds are right for me NOW - because I haven't had the luxury of months or years to plan for new conditions and their treatments. I'm cutting myself that slack, knowing I can wean myself from them later, when I'm stronger and have emerged more completely from the convalescent stage. Perhaps I will blog about the process of jettisoning those crutches? We'll see.
Meanwhile, I count myself blessed to be under the oversight and care of a fine MD who is forthcoming, friendly, flexible, considerate and accessible. In his practice, he routinely uses diet, exercise/fitness and nutritional supplementation in addition to Rx meds and allopathic methods. I feel safe letting him share responsibility for my health at this point, because this flurry of self-education (while mentally fascinating) is unable to keep pace with the urgency of my situation and the variety and depth of medical/pharmacological knowledge required.
I'm blogging on a natural health site. I'm pursuing a Complementary Medicine program. Bear with me. Thanks.
Someone recently asked me how O can be both a recessive allele and the world's most common blood type. She had never heard of the Punnet Square, which, in my day, we all had to learn in 7th grade Science. I explained to her that two parents carrying recessive O alleles can produce an O child, even though neither is O; O's can show up as the children of 2 A's, 2 B's, etc.
Not everyone knows how to make or use the Punnet Square, but many wonder about the possible blood types for offspring of parents of the various types. Another question often posed is that of a parent's blood type when the type of the child and the other parent are known. Here's the handy-dandy Results Sheet for your reference:
O+O = 100% O
O+Ao = 50% A, 50% O
O+Aa = 100% A
O+Bo = 50% B, 50% O
O+Bb = 100% B
O+AB = 50% A, 50% B
Ao+Ao = 75% A, 25% O
Ao+Aa = 100% A
Aa+Aa = 100% A
Ao+Bo = 25% A, 25% B, 25% AB, 25% O
Ao+Bb = 50% B, 50% AB
Aa+Bo = 50% A, 50% AB
Aa+Bb = 100% AB
Ao+AB = 50% A, 25% B, 25% AB
Aa+AB = 50% A, 50% AB
Bo+Bo = 75%B, 25% O
Bo+Bb = 100% B
Bb+Bb = 100% B
Bo+AB = 25% A, 50% B, 25% AB
Bb+AB = 50% B, 50% AB
AB+AB = 25% A, 25% B, 50% AB
Note that these are odds, i.e., likelihoods, not actual results. For example, the four children of a Bo/Bo couple could be all B's, even though the likelihood of each child's being B was only 75%.