How 30 Years of Heart Surgeries Taught My Dad How to Live
[Editor's Note: This piece is the winner of our 2019 essay contest, which prompted readers to reflect on the question: "How has an advance in science or medicine changed your life?"]
My father did not expect to live past the age of 50. Neither of his parents had done so. And he also knew how he would die: by heart attack, just as his father did.
In July of 1976, he had his first heart attack, days before his 40th birthday.
My dad lived the first 40 years of his life with this knowledge buried in his bones. He started smoking at the age of 12, and was drinking before he was old enough to enlist in the Navy. He had a sarcastic, often cruel, sense of humor that could drive my mother, my sister and me into tears. He was not an easy man to live with, but that was okay by him - he didn't expect to live long.
In July of 1976, he had his first heart attack, days before his 40th birthday. I was 13, and my sister was 11. He needed quadruple bypass surgery. Our small town hospital was not equipped to do this type of surgery; he would have to be transported 40 miles away to a heart center. I understood this journey to mean that my father was seriously ill, and might die in the hospital, away from anyone he knew. And my father knew a lot of people - he was a popular high school English teacher, in a town with only three high schools. He knew generations of students and their parents. Our high school football team did a blood drive in his honor.
During a trip to Disney World in 1974, Dad was suffering from angina the entire time but refused to tell me (left) and my sister, Kris.
Quadruple bypass surgery in 1976 meant that my father's breastbone was cut open by a sternal saw. His ribcage was spread wide. After the bypass surgery, his bones would be pulled back together, and tied in place with wire. The wire would later be pulled out of his body when the bones knitted back together. It would take months before he was fully healed.
Dad was in the hospital for the rest of the summer and into the start of the new school year. Going to visit him was farther than I could ride my bicycle; it meant planning a trip in the car and going onto the interstate. The first time I was allowed to visit him in the ICU, he was lying in bed, and then pushed himself to sit up. The heart monitor he was attached to spiked up and down, and I fainted. I didn't know that heartbeats change when you move; television medical dramas never showed that - I honestly thought that I had driven my father into another heart attack.
Only a few short years after that, my father returned to the big hospital to have his heart checked with a new advance in heart treatment: a CT scan. This would allow doctors to check for clogged arteries and treat them before a fatal heart attack. The procedure identified a dangerous blockage, and my father was admitted immediately. This time, however, there was no need to break bones to get to the problem; my father was home within a month.
During the late 1970's, my father changed none of his habits. He was still smoking, and he continued to drink. But now, he was also taking pills - pills to manage the pain. He would pop a nitroglycerin tablet under his tongue whenever he was experiencing angina (I have a vivid memory of him doing this during my driving lessons), but he never mentioned that he was in pain. Instead, he would snap at one of us, or joke that we were killing him.
I think he finally determined that, if he was going to have these extra decades of life, he wanted to make them count.
Being the kind of guy he was, my father never wanted to talk about his health. Any admission of pain implied that he couldn't handle pain. He would try to "muscle through" his angina, as if his willpower would be stronger than his heart muscle. His efforts would inevitably fail, leaving him angry and ready to lash out at anyone or anything. He would blame one of us as a reason he "had" to take valium or pop a nitro tablet. Dinners often ended in shouts and tears, and my father stalking to the television room with a bottle of red wine.
In the 1980's while I was in college, my father had another heart attack. But now, less than 10 years after his first, medicine had changed: our hometown hospital had the technology to run dye through my father's blood stream, identify the blockages, and do preventative care that involved statins and blood thinners. In one case, the doctors would take blood vessels from my father's legs, and suture them to replace damaged arteries around his heart. New advances in cholesterol medication and treatments for angina could extend my father's life by many years.
My father decided it was time to quit smoking. It was the first significant health step I had ever seen him take. Until then, he treated his heart issues as if they were inevitable, and there was nothing that he could do to change what was happening to him. Quitting smoking was the first sign that my father was beginning to move out of his fatalistic mindset - and the accompanying fatal behaviors that all pointed to an early death.
In 1986, my father turned 50. He had now lived longer than either of his parents. The habits he had learned from them could be changed. He had stopped smoking - what else could he do?
It was a painful decade for all of us. My parents divorced. My sister quit college. I moved to the other side of the country and stopped speaking to my father for almost 10 years. My father remarried, and divorced a second time. I stopped counting the number of times he was in and out of the hospital with heart-related issues.
In the early 1990's, my father reached out to me. I think he finally determined that, if he was going to have these extra decades of life, he wanted to make them count. He traveled across the country to spend a week with me, to meet my friends, and to rebuild his relationship with me. He did the same with my sister. He stopped drinking. He was more forthcoming about his health, and admitted that he was taking an antidepressant. His humor became less cruel and sadistic. He took an active interest in the world. He became part of my life again.
The 1990's was also the decade of angioplasty. My father explained it to me like this: during his next surgery, the doctors would place balloons in his arteries, and inflate them. The balloons would then be removed (or dissolve), leaving the artery open again for blood. He had several of these surgeries over the next decade.
When my father was in his 60's, he danced at with me at my wedding. It was now 10 years past the time he had expected to live, and his life was transformed. He was living with a woman I had known since I was a child, and my wife and I would make regular visits to their home. My father retired from teaching, became an avid gardener, and always had a home project underway. He was a happy man.
Dancing with my father at my wedding in 1998.
Then, in the mid 2000's, my father faced another serious surgery. Years of arterial surgery, angioplasty, and damaged heart muscle were taking their toll. He opted to undergo a life-saving surgery at Cleveland Clinic. By this time, I was living in New York and my sister was living in Arizona. We both traveled to the Midwest to be with him. Dad was unconscious most of the time. We took turns holding his hand in the ICU, encouraging him to regain his will to live, and making outrageous threats if he didn't listen to us.
The nursing staff were wonderful. I remember telling them that my father had never expected to live this long. One of the nurses pointed out that most of the patients in their ward were in their 70's and 80's, and a few were in their 90's. She reminded me that just a decade earlier, most hospitals were unwilling to do the kind of surgery my father had received on patients his age. In the first decade of the 21st century, however, things were different: 90-year-olds could now undergo heart surgery and live another decade. My father was on the "young" side of their patients.
The Cleveland Clinic visit would be the last major heart surgery my father would have. Not that he didn't return to his local hospital a few times after that: he broke his neck -- not once, but twice! -- slipping on ice. And in the 2010's, he began to show signs of dementia, and needed more home care. His partner, who had her own health issues, was not able to provide the level of care my father needed. My sister invited him to move in with her, and in 2015, I traveled with him to Arizona to get him settled in.
After a few months, he accepted home hospice. We turned off his pacemaker when the hospice nurse explained to us that the job of a pacemaker is to literally jolt a patient's heart back into beating. The jolts were happening more and more frequently, causing my Dad additional, unwanted pain.
My father in 2015, a few months before his death.
My father died in February 2016. His body carried the scars and implants of 30 years of cardiac surgeries, from the ugly breastbone scar from the 1970's to scars on his arms and legs from borrowed blood vessels, to the tiny red circles of robotic incisions from the 21st century. The arteries and veins feeding his heart were a patchwork of transplanted leg veins and fragile arterial walls pressed thinner by balloons.
And my father died with no regrets or unfinished business. He died in my sister's home, with his long-time partner by his side. Medical advancements had given him the opportunity to live 30 years longer than he expected. But he was the one who decided how to live those extra years. He was the one who made the years matter.
Move Over, Iron Man. A Real-Life Power Suit Helped This Paralyzed Grandmother Learn to Run.
Puschel Sorensen first noticed something was wrong when her fingertips began to tingle. Later that day, she grew weak and fell.
It picked up small electrical impulses on her skin's surface and turned them into full movement in her legs.
Her family rushed her to the doctor, where she received the devastating diagnosis of Guillain-Barré Syndrome -- a rare and rapidly progressing autoimmune disorder that attacks the myelin sheath covering nerves.
Sorensen, a once-spry grandmother in her late fifties, spent 54 days in intensive care in 2018. When she was finally transferred to a rehab facility near her home in Florida, she was still on a feeding tube and ventilator, and was paralyzed from the neck down. Progress with traditional physical therapy was slow.
Sorensen in the hospital after her diagnosis of Guillain-Barré syndrome.
And then everything changed. Sorensen began using a cutting-edge technology called an exoskeleton to relearn how to walk. In the vein of Iron Man's fictional power suit, it confers strength and mobility to the wearer that isn't possible otherwise. In Sorensen's case, her device, called HAL – for hybrid assistive limb -- picked up small electrical impulses on her skin's surface and turned them into full movement in her legs while she attempted to walk on a treadmill.
"It was very difficult, but super awesome," recalls Sorensen, of first using the device. "The robot was having to do all the work for me."
Amazingly, within a year, she was running. She's one of 38 patients who have used HAL to recover from accidents or medical catastrophes.
Cyberdyne's hybrid assistive limb technology.
"How do you thank someone for giving them back the ability to walk, the ability to live your life again?" Sorensen asks effusively.
It's still early days for such exoskeleton devices, which number perhaps a few thousand worldwide, according to data from the handful of manufacturers who create them with any scale. But the devices' ability to dramatically rehabilitate patients like Sorensen highlights their potential to extract untold numbers of people from wheelchairs, and even to usher in a new paradigm for caregiving – one of the fastest growing segments of the U.S. economy.
"I've been a physical therapist for 16 years, and (these devices) help teach patients the right way to move in rehabilitation," says Robert McIver, director of clinical technology at the Brooks Cybernic Treatment Center, part of the Brooks Rehabilitation Hospital in Jacksonville, Fla, where Sorensen recovered.
Another patient there, a 17-year-old named George with a snowboarding injury that paralyzed his legs, was getting around with a walker within 20 sessions.
As patients progress in their recoveries, so does exoskeleton technology. Jack Peurach, CEO of Ekso, one of the leaders in the space, believes within a decade they could resemble an article of clothing (a "magic pair of pants" is his phrase). They also may become inexpensive and reliable enough to transition from a medical to a consumer device. McIver sees them eventually being used in the home on an ongoing basis as a personal assistive device, much like a walker or cane, to prevent falls in elderly people.
Such a transition "certainly could eventually lessen the need for caregivers," says Sharona Hoffman, a professor of law at Case Western University in Cleveland who has written extensively on aging and bioethics. "We have a real shortage of caregivers, so that would be a good thing."
Of course, having an aging and disabled population using exoskeletons in much the same way as an Apple Watch raises issues of its own.
Dr. Elizabeth Landsverk, a California-based geriatrician and founder of a company that performs house calls for elderly patients, believes the tech holds some promise in easing the burden on caregivers, who sometimes have to lift or move patients without assistance. But she also believes exoskeletons could become overhyped.
"I don't see robotics as completely replacing the caregiver," she says. And even if exoskeletons became akin to articles of clothing, she is skeptical of how convenient they could become.
"It's hard enough to get into support hose. Would an older person be able to get in and out of it on their own?" she asks, noting that a patient's cognitive levels could pose a huge barrier to donning such a device without assistance.
If personal exoskeletons did wildly succeed, Hoffman wonders whether they would leave the elderly more physically mobile yet also more socially isolated, since caregivers or even residing in an assisted living facility may no longer be required. Or, if they were priced in the hundreds or thousands of dollars, he worries that the cost would exacerbate social inequalities among the elderly and disabled.
"It's almost like a bad dream that [my illness] happened."
With any technology that confers superhuman ability, there's also the question of appropriate usage. Even the fictional Power Loader in the movie Alien required an operator's license. In the real world, such an approach would likely pay dividends.
"We would have to make sure physicians are well-trained in these devices, and patients have a way of getting training to operate them that is thorough and responsible," Hoffman says.
But despite some unresolved questions, it is a remarkable achievement to be able to give people back their lives thanks to new technology.
"It's almost like a bad dream that [my illness] happened," says Sorensen, who managed to walk in her daughter's wedding after her recovery. "Because now everything is pretty much back to normal and it's awesome."
23andMe Is Using Customers’ Genetic Data to Develop Drugs. Is This Brilliant or Dubious?
Leading direct-to-consumer (DTC) genetic testing companies are continuously unveiling novel ways to leverage their vast stores of genetic data.
"23andMe will tell you what diseases you have and then sell you the drugs to treat them."
As reported last week, 23andMe's latest concept is to develop and license new drugs using the data of consumers who have opted in to let their information be used for research. To date, over 10 million people have used the service and around 80 percent have opted in, making its database one of the largest in the world.
Culture researcher Dr. Julia Creet is one of the foremost experts on the DTC genetic testing industry, and in her forthcoming book, The Genealogical Sublime, she bluntly examines whether such companies' motives and interests are in sync with those of consumers.
Leapsmag caught up with Creet about the latest news and the wider industry's implications for health and privacy.
23andMe has just announced that it plans to license a newly developed anti-inflammatory drug, the first one created using its customers' genetic data, to Almirall, a pharma company in Spain. What's your take?
I think this development is the next step in the evolution of the company and its "double-sided" marketing model. In the past, as it enticed customers to give it their DNA, it sold the results and the medical information divulged by customers to other drug companies. Now it is positioning itself to reap the profits of a new model by developing treatments itself.
Given that there are many anti-inflammatory drugs on the market already, whatever Almirall produces might not have much of an impact. We might see this canny move as a "proof of concept," that 23andMe has learned how to "leverage" its genetic data without having to sell them to a third party. In a way, the privacy provisions will be much less complicated, and the company stands to attract investment as it turns itself into [a pseudo pharmaceutical company], a "pharma-psuedocal" company.
Emily Drabant Conley, the president of business development, has said that 23andMe is pursuing other drug compounds and may conduct their own clinical trials rather than licensing them out to their existing research partners. The end goal, it seems, is to make direct-to-consumer DNA testing to drug production and sales back to that same consumer base a seamless and lucrative circle. You have to admit it's a brilliant business model. 23andMe will tell you what diseases you have and then sell you the drugs to treat them.
In your new book, you describe how DTC genetic testing companies have capitalized on our innate human desire to connect with or ancestors and each other. I quote you: "This industry has taken that potent, spiritual, all-too-human need to belong... and monetized it in a particularly exploitative way." But others argue that DTC genetic testing companies are merely providing a service in exchange for fair-market compensation. So where does exploitation come into the picture?
Yes, the industry provides a fee for service, but that's only part of the story. The rest of the story reveals a pernicious industry that hides its business model behind the larger science project of health and heredity. All of the major testing companies play on the idea of "lack," that we can't know who we are unless we buy information about ourselves. When you really think about it, "Who do you think you are?" is a pernicious question that suggests that we don't or can't know who we or to whom we are related without advanced data searches and testing. This existential question used to be a philosophical question; now the answers are provided by databases that acquire more valuable information than they provide in the exchange.
"It's a brilliant business model that exploits consumer naiveté."
As you've said before, consumers are actually paying to be the product because the companies are likely to profit more from selling their genetic data. Could you elaborate?
The largest databases, AncestryDNA and 23andMe, have signed lucrative agreements with biotech companies that pay them for the de-identified data of their customers. What's so valuable is the DNA combined with the family relationships. Consumers provide the family relationships and the companies link and extrapolate the results to larger and larger family trees. Combined with the genetic markers for certain diseases, or increased susceptibility to certain diseases, these databases are very valuable for biotech research.
None of that value will ever be returned to consumers except in the form of for-profit drugs. Ancestry, in particular, has removed all information about its "research partners" from its website, making it very difficult to see how it is profiting from its third-party sales. 23andMe is more open about its "two-sided business model," but encourages consumers to donate their information to science. It's a brilliant business model that exploits consumer naiveté.
A WIRED journalist wrote that "23andMe has been sharing insights gleaned from consented customer data with GSK and at least six other pharmaceutical and biotechnology firms for the past three and a half years." Is this a consumer privacy risk?
I don't see that 23andMe did anything to which consumers didn't consent, albeit through arguably unreadable terms and conditions. The part that worries me more is the 300 phenotype data points that the company has collected on its consumers through longitudinal surveys designed, as Anne Wojcicki, CEO and Co-founder of 23andMe, put it, "to circumvent medical records and just self-report."
Everyone is focused on the DNA, but it's the combination of genetic samples, genealogical information and health records that is the most potent dataset, and 23andMe has figured out a way to extract all three from consumers.