Filed under: Brave New World, Connections, General Musings, Health, Science, Science Fiction, Society, Survival, tech | Tags: atherosclerosis, blogging, echocardiography, electrocardiography, health, heart attack, jim downey, luck, masculinity, miracles, myocardial infarction, science, Science Fiction, stent, technology, Wikipedia
This is a follow-up to my previous post.
I just sent the following message to my primary care doctor:
Dr M,
I wanted to take a moment and thank you. Your recommendation that I take an echo stress test likely saved my life.
You’ll probably get the cardiac cath results from Dr W, but it may not include an observation he made when he first examined me: that had I come to his practice for a routine exam, presenting the same symptoms I told you, he probably would not have suspected such a serious condition. But the echo stress test clearly demonstrated that there was a major problem. And that the cath procedure showed just how bad it was: 95-99% blockage in the lower part of my RCA.
The seriousness of that condition was masked by my overall/otherwise heart strength. But it could have *very* easily resulted in a serious M.I. or even death. Had you not picked up on the subtle indications we discussed, and taken the prudent step of recommending the echo stress test, my true heart condition may not have been discovered until it was far too late.
So, thank you. Your intelligence, education, and experience probably have added decades to my life.
Why am I sharing this?
Because I got extremely lucky. And I want others to benefit from that luck, and my experience, if possible.
As it turns out, the overall condition of my heart is remarkably good. The strength and efficiency of that muscle is at the very top range for normal healthy people, or at the lower end you’d find in a serious athlete. Furthermore, there are no other indications of atherosclerosis or plaque build-up.
However, due to either a genetic or developmental defect, the lower part of my RCA is badly kinked/convoluted, creating a situation where eddies in the blood circulation form, and allowing what plaque I do have in my system to accumulate, like a sandbar will develop as a result of a bend in a river. In my case, that accumulation had progressed to the point where just the slightest additional clump of plaque could have closed off the artery completely, allowing a part of my heart to die. That’s a classic heart attack, folks.
But the strength of my heart overall was such that it almost completely masked the condition of my RCA. It wasn’t until I was up to about 90% of my heart rate maximum while taking the stress test that indications of the problem surfaced. And even then, just how bad the situation was wasn’t fully known until the cath procedure was done. But when the cardiologist went in and directly observed the condition of my coronary arteries, he saw the problem. And with about 90 minutes of hard work, corrected it with a couple of long cardiac stents.
That was just three days ago. I actually left the hospital the next morning, and have been playing catch-up on things since then.
Think about that: for 90 minutes, a team of medical professionals were playing roto-rooter with the inside of a major artery of my heart. I was completely awake and unsedated through the whole thing. The next day I left the hospital, walking on my own without difficulty. This morning I got in my usual morning walk of a mile. For about another week I have to take it a little easy, to let the puncture site in my femoral artery completely heal, and for the next year I need to take blood thinners, but otherwise I don’t need extraordinary care.
That’s pretty miraculous, in my opinion. One of the everyday miracles which surround us, and which we seldom give due consideration. Stuff that not too long ago would have been considered science fiction.
Anyway, here’s my advice, though you’ve heard it before: pay attention to your body. Don’t succumb to toxic masculinity. Or, if you’re a woman, to the illusion that you’re immune. If you think that something is going on, get it checked out. A little embarrassment at being wrong beats dying.
Jim Downey
Filed under: Alzheimer's, Brave New World, Connections, General Musings, Health, Music, Science, Society, Survival, tech | Tags: Affordable Care Act, Alzheimer's, blogging, care-giving, echocardiography, electrocardiography, health, heart attack, Her Final Year, jim downey, luck, masculinity, music, Pink Floyd, Roberto A. Ferdman, science, technology, Washington Post, Wikipedia
“Well, I’d hate for you to have a heart attack,” said my doctor. She was standing against the wall in the small exam room, arms folded in a classic body language message of being skeptical about what I had just said.
* * * * * * *
I wrote this in September 2007:
And as I stood there at the sink, washing the dishes, thinking favorably on the option of having a heart attack, it sunk in that I was done. I mean, I’d been considering that a heart attack might be the best solution to my problems. Yeah, a heart attack. Hell, at 49, I’d probably survive it. It’d come as no surprise to anyone, given the kind of physiological and psychological stress I’m under. No one could blame me for no longer being a care-provider for someone with Alzheimer’s. Hey, it might even get someone to think about noticing my writing, since a tragic character (whether alive or dead) always gets more notice as an artist than does someone who has their life, and their shit, together.
That was a few months before our care-giving journey ended, and Martha Sr passed away. For those who don’t know the story, I was able to re-center, and continue with my role as a care-provider the next day. The following year was spent recovering from the stresses of that role, and getting my shit back together. Because in spite of the perspective indicated in the final sentence of the passage above, my hold on things wasn’t nearly as solid as I thought at the time.
Such is often the case. I think it’s a defense mechanism, with more than a little toxic-masculinity.
* * * * * * *
Did I say toxic-masculinity? Why yes, I did. Such as in this timely article:
Men, in short, are less likely to seek preventive care than women and more likely to put off seeing a doctor when in need of medical care. They also prefer to seek out male doctors, but they tend to underreport pain and injuries to male doctors, thereby compromising the chances of receiving optimal care. And all of this, it should be said, is particularly true among those men who prescribe to masculine ideologies.
“Masculine men tend to not go to the doctor, and when they do, they tend to pick male doctors whom they then underreport their ailments to,” Sanchez said.
* * * * * * *
We recently had a change in our financial situation, thanks to the sale of some property we owned. That, combined with the protections of the ACA which mean you can’t be as easily penalized for a pre-existing condition, made it a lot easier for me to make the decision to having something checked by my doctor.
Howso? Well, our income has never been huge. In fact, it’s always been pretty modest, though in recent years it has gotten better and become more stable. But still, if I had something turn up which required me to miss a significant period of work, or which came with a large insurance co-pay for treatment, we would have lost what progress we had made. And not having to worry about having a documented ‘serious health issue’ mess up my insurance coverage in the future is a huge relief.
In other words, I’m financially stable enough to get sick. Hell of a system, isn’t it?
* * * * * * *
“Well, I’d hate for you to have a heart attack,” said my doctor. She was standing against the wall in the small exam room, arms folded in a classic body language message of being skeptical about what I had just said.
Which was that I was reluctant to go see any medical specialist, since the way the system works it’s almost guaranteed that they would find something which needed ‘treatment’. After all, none of us are walking perfect models of health. And, as the old adage goes, never ask a barber if you need a haircut.
But I nodded my head, sitting there on the exam table. I had my shirt back on after they had done the in-office EKG, which showed that everything at present was OK, but that there were possible indications of problems in the recent past. And the very mild symptoms I had recently were possibly indicative of a coronary arterial blockage, and it runs in my family on my father’s side. “Yeah, me too. OK, go ahead and book me for a stress test.”
She nodded, we chatted some more, and she left.
I had the stress test last Friday. Got the call with the results yesterday.
No complete blockages. But some constrictions which need to be addressed. So yeah, sometime soon I’ll be seeing a cardiologist, and we’ll discuss options from there.
It’s not good news. But it’s not horrid news. After all, this is one of the most common medical problems around the world. So we’ll see what happens.
But I’m glad that I’m lucky enough to be in a position to have it found, treated (to whatever extent possible), and not worry about it completely ruining our financial situation. And I’m also glad that I’m not quite macho enough to think that I should ignore the classic symptoms, as mild as they were.
Jim Downey
PS: if you feel the need to post a political comment related to the ACA … don’t. I’ll just delete it.
Filed under: Connections, Emergency, Flu, Government, Health, Louis Pasteur, NPR, Pandemic, Plague, Predictions, Science, Science Fiction, Society, Survival, Writing stuff | Tags: blogging, cytokine storm, Ebola, fire-flu, flu, health, influenza, Jason Beaubien, jim downey, Louis Pasteur, NPR, pandemic, Peter Sands, predictions, science, Science Fiction, Spanish flu, St. Cybi's Well, Wikipedia, writing
Last week I wrote the following excerpt from St Cybi’s Well:
Megan came out of the bedroom, dressed, but still toweling her hair. “Done. Bathroom’s all yours. What did the BBC have to say?”
Darnell glanced over at the stereo system, then back to her. “The government is asking people to just stay home if they have any indications of illness. There’s talk of a week-long ‘bank holiday’, so people don’t go in to work or school; we’ll probably hear more about that later today. And there have been more anti-immigrant riots in London and some other places. And not just the so-called ‘Tommys’.”
“People are frightened.”
“Yeah, no surprise.” Darnell nodded at the stereo again. “There was also some science reporting about VCS [Viral Cytokine Syndrome, which is the initial name for the spreading illness] itself. Looks like it is caused by a flu strain which is similar to the 1918 virus, but one which is even more virulent.”
Megan paused, her hands lowered. The towel hung limply by her side. “Didn’t that kill millions, world-wide?”
“Yeah.”
“And this looks to be worse?”
“Yeah,” Darnell repeated. “This seems to spread just as easily, but kills faster. Well, kills healthy adults faster – that cytokine storm thing, which is basically the immune system going crazy, creating high fever and complete exhaustion. Anyone who is young, or old, or otherwise has a compromised immune system, can get the flu and there’s a good chance that they’ll develop pneumonia which can kill them in a week or so without proper treatment.”
“But there are treatments for pneumonia.”
“There are. And even some things that can be done for someone with Cytokine Syndrome, if you get to them soon enough.” He sighed. “But how well do you think the health system here or anywhere will be able to handle such a fast-moving epidemic, particularly if health workers are among the most vulnerable group? Do you remember how devastating haemorrhagic fevers like Ebola have been in isolated areas, because health workers are often among the first victims of the disease? And those require direct contact with bodily fluids … this flu is airborne.”
Today, from NPR’s coverage of a new global health risk report:
Sands says the Ebola outbreak of 2014-15 was a wake-up call. It showed that the world is not prepared to deal with a rapidly spreading disease.
“The alerts were raised too slowly. Local health systems were quickly overwhelmed. The international response was slow and clumsy,” he says. “We lacked many of the medical products we needed, either therapeutic or vaccination or indeed even effective diagnostics.”
* * *
If an outbreak like the Spanish flu of 1918, which killed more than 50 million, were to happen today, the economic damage would be in the trillions of dollars. And the psychological toll could make things worse. Sands says news of a deadly, highly contagious pathogen could prompt people all over the world to panic.
“We are much more connected not just physically but by media nowadays,” he says. “Hearing about and seeing infectious disease outbreaks on TV can spread fear even more rapidly than the disease itself. That in turn can grow changes in behavior and policy which magnify the economic impact.”
*sigh*
Jim Downey
Filed under: Brave New World, Connections, Expert systems, Health, Predictions, Science, Science Fiction, Scientific American, tech | Tags: blogging, Communion of Dreams, cyberware, Elizabeth Gibney, health, jim downey, medicine, predictions, science, Science Fiction, Scientific American, technology
Good article at Scientific American about the coming medical monitoring technology. Excerpt:
“Why don’t we have a similar vision for our bodies?” wonders Gustafsson, an engineer whose team at the Swedish electronics company Acreo, based in Kista, is one of many around the world trying to make such a vision possible. Instead of letting health problems go undetected until a person ends up in hospital—the medical equivalent of a roadside breakdown—these teams foresee a future in which humans are wired up like cars, with sensors that form a similar early-warning system.
Working with researchers at Linköping University in Sweden, Gustafsson’s team has developed skin-surface and implanted sensors, as well as an in-body intranet that can link devices while keeping them private.
Gee, that sounds familiar. Here’s a passage from Chapter 15 of Communion of Dreams about the remote-monitoring of a ship’s crew through their cyberware, documenting medical conditions during a crisis:
“Main drive has been disengaged, transit rotation to new heading begun. All human crew members of the ship are now experiencing severe physiological stress. Attempting to identify source of this event . . .”
“My god,” gasped someone.
“. . . expert Stepan has become unresponsive. Experts Rurik and Rika attempting to establish control of transit. Several human crew members have expired. Medical telemetry indicates cerebral hemorrhage in most cases. Other crew members experiencing symptoms of shock and heart attack. PC systems attempting to cope. All human crew members seem to be affected. None of the standard emergency protocols sufficient to counteract whatever is occurring. Transit has been stopped. Expert Stepan remains unresponsive. Source of event is indeterminate. There have been no detectable changes to any ship systems, nothing abnormal in environmental controls. Only eight human crew members remain alive, all are critical and unconscious. PC systems reporting imminent death of five of those crew members. Prognosis for remaining three is not good, death is expected within an hour. All medical telemetry will be compiled and transmitted on second channel. ”
Another excerpt from the SA article:
To get around that, Strano’s lab has developed synthetic, long-lived detector materials that can be mixed with a water-based gel and injected under the skin like a tattoo. The ‘ink’ for this tattoo consists of carbon nanotubes coated with dangling polymer strands, which have a lock-and-key chemical structure that recognizes biomarkers by dictating which molecules can dock with them. When biomarkers bind to the polymer, they subtly change the optical properties of the nanotube: shine a light on the tattoo, and a glow reveals the presence of the biomarker.
Again, from Communion of Dreams:
She nodded. “You know how the palmkey is installed and works, right?”
“Yeah, sure. It’s a thin film injected just under the skin, forms a fluid web across the palm that is programmed to function as a close-range transceiver. Simple enough.”
Predictions, predictions …
Jim Downey
Thanks to Tim for the heads-up!
Filed under: Alzheimer's, Amazon, Feedback, Health, Hospice, Kindle, Science Fiction | Tags: Aliens, Alzheimer's, Amazon, blogging, care-giving, caregiving, Communion of Dreams, direct publishing, feedback, health, Her Final Year, jim downey, John Bourke, Kindle, memoir, promotion, reviews, Science Fiction, writing
New review up at Amazon:
New Age Sci-Fi, October 15, 2015
By A ReaderThis review is from: Communion of Dreams (Kindle Edition)I borrowed this book from the Prime lending library as I was in the mood for a good old sci-fi first contact story and the books description lead me to believe that’s what it was. The first part of the book was exactly that. But then it shifted and did become more of a spiritual, new age-y, story about aura’s, healing hands, meditative states, etc. that just happened to take place on Titan. That’s not a bad thing, but it just wasn’t what I was in the mood to read at the moment. I should have suspected as much as the cover art and title depict nothing alien/space related, my bad. The story was interesting and kept my attention, the writing was good, the ideas presented interesting. But heads-up, if you’re in the mood for aliens, this might not be the book to read.
Well, I can’t really disagree, but … huh.
And there’s also a new review of Her Final Year you might enjoy.
Have thoughts about either one? Comment here, there, or maybe even write your own review!
Jim Downey
Filed under: Alzheimer's, Amazon, Hospice, Humor, Kindle, Marketing, Promotion, Science Fiction | Tags: Alzheimer's, Amazon, blogging, care-giving, Communion of Dreams, free, health, Her Final Year, hospice, humor, jim downey, John Bourke, Kindle, promotion, Science Fiction
Just a quick note: both Communion of Dreams and Her Final Year are available for free download today! Go get ’em! Tell your friends! Tell your family! Tell your pets!
Except fish. Fish don’t like books. At least as far as I know.
Jim Downey
Filed under: Alzheimer's, Connections, Diane Rehm, Health, Hospice, Kindle, NPR, Science, Society, tech | Tags: Alzheimer's, Alzheimer's Association, Alzheimer's Association International Conference, Alzheimer’s Disease Neuroimaging Initiative, amyloid plaque, blogging, care-giving, CNN, Diane Rehm, free, health, Her Final Year, hospice, jim downey, John Bourke, Keith Fargo, Kindle, Lauran Neergaard, Liza Lucas, Murali Doraiswamy, Nancy Donovan, NPR, science, tau protein, technology
It’s been seven and a half years since my mother-in-law passed away from Alzheimer’s. A couple years later, we published Her Final Year. Since then I have kept an eye on ongoing research concerning the disease, and have mentioned it here when I thought appropriate. This week, there are several new promising developments to come out of the Alzheimer’s Association International Conference in Washington, D.C.
First is a saliva test for metabolites which indicate brain changes associated with Alzheimer’s. From this CNN article:
Researchers from the University of Alberta in Canada analyzed saliva samples of fewer than 100 people, divided into three groups based on cognitive ability: 35 with normal aging cognition, 25 with mild cognitive impairment and 22 with Alzheimer’s disease.
Using protein analysis technology, researchers examined the saliva of each individual, analyzing nearly 6,000 metabolites, which are small molecules that are byproducts of chemical reactions in the brain.
The team then discovered specific biomarkers (or patterns of metabolites) in the groups with known Alzheimer’s or mild cognitive impairment, in comparison with the natural aging group, and tested the biomarkers as predictors of cognitive performance.
It’s a very small study, but if additional research into this area bares out the results, this could be a quick and inexpensive screening tool to help determine who may be at risk for Alzheimer’s. Because, as discussed in a very good segment on the Diane Rehm show this morning, early detection helps even though there are limited treatment options for Alzheimer’s (and other age-related dementias). That’s because there are things you can do to prepare for managing the disease: establish necessary legal protections (things like family trusts and durable power of attorney), educate family members and caregivers, investigate daycare and assisted living options, participate in drug and treatment trials, and similar.
Speaking of drug and treatment trials, the Alzheimer’s Association has a very useful online tool for Alzheimer’s patients, care-providers, and family members:
About Alzheimer’s Association TrialMatch®
Alzheimer’s Association TrialMatch is a free, easy-to-use clinical studies matching service that connects individuals with Alzheimer’s, caregivers, healthy volunteers and physicians with current studies. Our continuously updated database of Alzheimer’s clinical trials includes more than 225 promising clinical studies being conducted at nearly 700 trials sites across the country.
This is just one of the new tools which have been made available since we cared for Martha Sr. Because in the last 7+ years, there has been a lot of research and a growing awareness that Alzheimer’s will touch nearly every family at some time.
One of the other pieces of information to come out of this week’s is that women seem to be more susceptible to the disease, and experience a faster decline in their mental abilities than men:
Study: Women with mild memory problem worsen faster than men
Older women with mild memory impairment worsened about twice as fast as men, researchers reported Tuesday, part of an effort to unravel why women are especially hard-hit by Alzheimer’s.
Nearly two-thirds of Americans with Alzheimer’s are women.
At age 65, seemingly healthy women have about a 1 in 6 chance of developing Alzheimer’s during the rest of their lives, compared with a 1 in 11 chance for men. Scientists once thought the disparity was just because women tend to live longer — but there’s increasing agreement that something else makes women more vulnerable.
There are a number of other factors which can have an impact on those numbers, of course. But even accounting for differences due to education, lifestyle, and social status, the discrepancy between men and women could not be accounted for. And having close family who had Alzheimer’s is a substantial risk factor, about doubling your chances of developing the disease. As is having any kind of major health crises requiring either hospitalization or surgery under general anesthesia. In each and every case, men seem to fare better than women.
That may not seem to be a “promising development”, particularly if you are a woman in the high-risk category/categories. But it is, in the sense that scientists are now coming to understand the disease much, much better than they did just a decade ago. When we cared for Martha Sr, there really wasn’t a good diagnostic tool to determine whether or not someone had Alzheimer’s — it was a diagnosis confirmed postmortem. Now there are very good imaging tools available for amyloid plaque and tau protein, as detailed at the Alzheimer’s Disease Neuroimaging Initiative.
As I noted above, there are still very limited treatment and drug options, though even there some hopeful results have been reported at the Conference. But real progress has been made. Alzheimer’s no longer needs to be a devastating diagnosis, something to be feared and hidden. If you, or someone you love, is showing any signs of memory or cognitive impairment, seek help. It’s even possible that through participation in some of the clinical trials you can be part of the solution.
Jim Downey
PS: As noted previously, the Kindle edition of Her Final Year is available as a free download on the first of each month.
Filed under: Alzheimer's, Amazon, Connections, Feedback, Health, Hospice, Kindle, Marketing, Promotion, Publishing, Science Fiction | Tags: Alzheimer's, Amazon, blogging, care-giving, caregiving, Communion of Dreams, direct publishing, feedback, free, health, Her Final Year, hope, jim downey, John Bourke, Kindle, literature, memoir, promotion, reviews, Science Fiction, writing
Playing a bit off of the title of my previous blog post …
Starting tomorrow, and until further notice, the First of the month for each month will mean that you can download Communion of Dreams and Her Final Year for free. Each month. Every month.
Why? Because offering free downloads is one of the basic promotional tools on the Kindle platform. It’s a way to generate sales and interest in a book. And also because it’s important to get the books to readers who may not be able to afford even the modest price of an e-book. For someone struggling as a care-provider, sometimes even a $2.99 price tag can be hard to budget for. Likewise for people who find themselves on hard times, and need a little hope and escape … something which I like to think Communion of Dreams can provide.
So we’ll give this a try. If you know anyone who might enjoy either or both books, let ’em know that they can download them for free tomorrow. And July 1st. And August 1st. And …
Jim Downey
Filed under: Brave New World, Connections, General Musings, Genetic Testing, Health, NPR, Science, tech, Wired | Tags: Allen Institute for Brain Science, blogging, BRAIN Initiative, health, jim downey, Katie M. Palmer, NPR, Rob Stein, science, technology, Wired
Two brief news items in the last day or so illustrate just *how much* fundamental knowledge we don’t have about our own biology.
The first is this good article from Wired about building a comprehensive model of the human brain: A First Big Step Toward Mapping the Human Brain
Relevant excerpt:
The Allen Cell Types Database, on its surface, doesn’t look like much. The first release includes information on just 240 neurons out of hundreds of thousands in the mouse visual cortex, with a focus on the electrophysiology of those individual cells: the electrical pulses that tell a neuron to fire, initiating a pattern of neural activation that results in perception and action. But understanding those single cells well enough to put them into larger categories will be crucial to understanding the brain as a whole—much like the periodic table was necessary to establish basic chemical principles.
Consider that: we’re just now really building a good map of how the different neurons interact within one small component of the brain. And not even the human brain, at that.
And this news story, which came as a shock to me when I heard it on NPR: Seasons May Tweak Genes That Trigger Some Chronic Diseases
From the story:
The seasons appear to influence when certain genes are active, with those associated with inflammation being more active in the winter, according to new research released Tuesday.
* * *
Other researchers say the findings could have far-reaching implications.
“The fact that they find so many genes that go up and down over the seasons is very interesting because we just didn’t know that our bodies go through this type of seasonal change before,” says Akhilesh Reddy, who studies circadian rhythms at the University of Cambridge but was not involved in the new research. “And if you look at the actual genetic evidence for the first time, it’s pretty profound really.”
Again, this is a really basic bit of science — akin to understanding how the sequence of gene expression leads to the development of an organism. Learning that your genetic activity changes during the year means that illnesses are much more dynamic than anyone realized previously.
Not to get too Rumsfeldian, but it really is important to know what we don’t know, as seen between the two items above. In the first case, researchers set out to build a model because they knew that they needed the basic knowledge. In the other, it was investigation of a mystery which led to an unexpected discovery.
And in both cases, it’s science at work. And very cool.
Jim Downey
Filed under: Brave New World, Connections, Genetic Testing, Predictions, Science, Science Fiction, Superman, tech, Writing stuff | Tags: blogging, Chinese, Chu Ling, Communion of Dreams, ExtremeTech, genetic modification, genetics, health, jim downey, John Hewitt, predictions, science, Science Fiction, technology, writing
From Chapter 5 of Communion of Dreams, after the revelation that the Chinese orphan Chu Ling is a clone:
Jon looked around. He decided to tell them the rest of the bad news. “And that’s not all. There’s evidence that the original host had been genetically manipulated to radically change several characteristics related to intelligence.”
Bailey looked a little confused. “What’s that mean?”
Gish sighed. “It means that someone has created a better human, and now is producing copies.”
“Well, better in their eyes, anyway,” said Gates. Her voice contained a touch of bitterness.
Gee, here’s a bit of news:
Chinese scientists create first genetically modified human embryos
And so it has come to pass: Chinese scientists at the University in Guangzhou have created the first genetically modified human embryos. Although there had been rumors circulating for some time that it had already been done, until now, there has been no official scientific report.
Another prediction come true.
Jim Downey
Communion Of Dreams 