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.
Matt Trau, a professor of chemistry at the University of Queensland, stunned the science world back in December when the prestigious journal Nature Communications published his lab's discovery about a unique property of cancer DNA that could lead to a simple, cheap, and accurate test to detect any type of cancer in under 10 minutes.
No one believed it. I didn't believe it. I thought, "Gosh, okay, maybe it's a fluke."
Trau granted very few interviews in the wake of the news, but he recently opened up to leapsmag about the significance of this promising early research. Here is his story in his own words, as told to Editor-in-Chief Kira Peikoff.
There's been an incredible explosion of knowledge over the past 20 years, particularly since the genome was sequenced. The area of diagnostics has a tremendous amount of promise and has caught our lab's interest. If you catch cancer early, you can improve survival rates to as high as 98 percent, sometimes even now surpassing that.
My lab is interested in devices to improve the trajectory of cancer patients. So, once people get diagnosed, can we get really sophisticated information about the molecular origins of the disease, and can we measure it in real time? And then can we match that with the best treatment and monitor it in real time, too?
I think those approaches, also coupled with immunotherapy, where one dreams of monitoring the immune system simultaneously with the disease progress, will be the future.
But currently, the methodologies for cancer are still pretty old. So, for example, let's talk about biopsies in general. Liquid biopsy just means using a blood test or a urine test, rather than extracting out a piece of solid tissue. Now consider breast cancer. Still, the cutting-edge screening method is mammography or the physical interrogation for lumps. This has had a big impact in terms of early detection and awareness, but it's still primitive compared to interrogating, forensically, blood samples to look at traces of DNA.
Large machines like CAT scans, PET scans, MRIs, are very expensive and very subjective in terms of the operator. They don't look at the root causes of the cancer. Cancer is caused by changes in DNA. These can be changes in the hard drive of the DNA (the genomic changes) or changes in the apps that the DNA are running (the epigenetics and the transcriptomics).
We don't look at that now, even though we have, emerging, all of these technologies to do it, and those technologies are getting so much cheaper. I saw some statistics at a conference just a few months ago that, in the United States, less than 1 percent of cancer patients have their DNA interrogated. That's the current state-of-the-art in the modern medical system.
Professor Matt Trau, a cancer researcher at the University of Queensland in Australia.
(Courtesy)
Blood, as the highway of the body, is carrying all of this information. Cancer cells, if they are present in the body, are constantly getting turned over. When they die, they release their contents into the blood. Many of these cells end up in the urine and saliva. Having technologies that can forensically scan the highways looking for evidence of cancer is little bit like looking for explosives at the airport. That's very valuable as a security tool.
The trouble is that there are thousands of different types of cancer. Going back to breast cancer, there's at least a dozen different types, probably more, and each of them change the DNA (the hard drive of the disease) and the epigenetics (or the RAM memory). So one of the problems for diagnostics in cancer is to find something that is a signature of all cancers. That's been a really, really, really difficult problem.
Ours was a completely serendipitous discovery. What we found in the lab was this one marker that just kept coming up in all of the types of breast cancers we were studying.
No one believed it. I didn't believe it. I thought, "Gosh, okay, maybe it's a fluke, maybe it works just for breast cancer." So we went on to test it in prostate cancer, which is also many different types of diseases, and it seemed to be working in all of those. We then tested it further in lymphoma. Again, many different types of lymphoma. It worked across all of those. We tested it in gastrointestinal cancer. Again, many different types, and still, it worked, but we were skeptical.
Then we looked at cell lines, which are cells that have come from previous cancer patients, that we grow in the lab, but are used as model experimental systems. We have many of those cell lines, both ones that are cancerous, and ones that are healthy. It was quite remarkable that the marker worked in all of the cancer cell lines and didn't work in the healthy cell lines.
What could possibly be going on?
Well, imagine DNA as a piece of string, that's your hard drive. Epigenetics is like the beads that you put on that string. Those beads you can take on and off as you wish and they control which apps are run, meaning which genetic programs the cell runs. We hypothesized that for cancer, those beads cluster together, rather than being randomly distributed across the string.
Ultimately, I see this as something that would be like a pregnancy test you could take at your doctor's office.
The implications of this are profound. It means that DNA from cancer folds in water into three-dimensional structures that are very different from healthy cells' DNA. It's quite literally the needle in a haystack. Because when you do a liquid biopsy for early detection of cancer, most of the DNA from blood contains a vast abundance of healthy DNA. And that's not of interest. What's of interest is to find the cancerous DNA. That's there only in trace.
Once we figured out what was going on, we could easily set up a system to detect the trace cancerous DNA. It binds to gold nanoparticles in water and changes color. The test takes 10 minutes, and you can detect it by eye. Red indicates cancer and blue doesn't.
We're very, very excited about where we go from here. We're starting to test the test on a greater number of cancers, in thousands of patient samples. We're looking to the scientific community to engage with us, and we're getting a really good response from groups around the world who are supplying more samples to us so we can test this more broadly.
We also are very interested in testing how early can we go with this test. Can we detect cancer through a simple blood test even before there are any symptoms whatsoever? If so, we might be able to convert a cancer diagnosis to something almost as good as a vaccine.
Of course, we have to watch what are called false positives. We don't want to be detecting people as positives when they don't have cancer, and so the technology needs to improve there. We see this version as the iPhone 1. We're interested in the iPhone 2, 3, 4, getting better and better.
Ultimately, I see this as something that would be like a pregnancy test you could take at your doctor's office. If it came back positive, your doctor could say, "Look, there's some news here, but actually, it's not bad news, it's good news. We've caught this so early that we will be able to manage this, and this won't be a problem for you."
If this were to be in routine use in the medical system, countless lives could be saved. Cancer is now becoming one of the biggest killers in the world. We're talking millions upon millions upon millions of people who are affected. This really motivates our work. We might make a difference there.
Kira Peikoff was the editor-in-chief of Leaps.org from 2017 to 2021. As a journalist, her work has appeared in The New York Times, Newsweek, Nautilus, Popular Mechanics, The New York Academy of Sciences, and other outlets. She is also the author of four suspense novels that explore controversial issues arising from scientific innovation: Living Proof, No Time to Die, Die Again Tomorrow, and Mother Knows Best. Peikoff holds a B.A. in Journalism from New York University and an M.S. in Bioethics from Columbia University. She lives in New Jersey with her husband and two young sons. Follow her on Twitter @KiraPeikoff.
Ethan Lindenberger, the Ohio teenager who sought out vaccinations after he was denied them as a child, recently testified before Congress about why his parents became anti-vaxxers. The trouble, he believes, stems from the pervasiveness of misinformation online.
There is evidence that 'educating' people with facts about the benefits of vaccination may not be effective.
"For my mother, her love and affection and care as a parent was used to push an agenda to create a false distress," he told the Senate Committee. His mother read posts on social media saying vaccines are dangerous, and that was enough to persuade her against them.
His story is an example of how widespread and harmful the current discourse on vaccinations is—and more importantly—how traditional strategies to convince people about the merits of vaccination have largely failed.
As responsible members of society, all of us have implicitly signed on to what ethicists call the "Social Contract" -- we agree to abide by certain moral and political rules of behavior. This is what our societal values, norms, and often governments are based upon. However, with the unprecedented rise of social media, alternative facts, and fake news, it is evident that our understanding—and application—of the social contract must also evolve.
Nowhere is this breakdown of societal norms more visible than in the failure to contain the spread of vaccine-preventable diseases like measles. What started off as unexplained episodes in New York City last October, mostly in communities that are under-vaccinated, has exploded into a national epidemic: 880 cases of measles across 24 states in 2019, according to the CDC (as of May 17, 2019). In fact, the Unites States is only eight months away from losing its "measles free" status, joining Venezuela as the second country out of North and South America with that status.
The U.S. is not the only country facing this growing problem. Such constant and perilous reemergence of measles and other vaccine-preventable diseases in various parts of the world raises doubts about the efficacy of current vaccination policies. In addition to the loss of valuable life, these outbreaks lead to loss of millions of dollars in unnecessary expenditure of scarce healthcare resources. While we may be living through an age of information, we are also navigating an era whose hallmark is a massive onslaught on truth.
There is ample evidence on how these outbreaks start: low-vaccination rates. At the same time, there is evidence that 'educating' people with facts about the benefits of vaccination may not be effective. Indeed, human reasoning has a limit, and facts alone rarely change a person's opinion. In a fascinating report by researchers from the University of Pennsylvania, a small experiment revealed how "behavioral nudges" could inform policy decisions around vaccination.
In the reported experiment, the vaccination rate for employees of a company increased by 1.5 percent when they were prompted to name the date when they planned to get their flu shot. In the same experiment, when employees were prompted to name both a date and a time for their planned flu shot, vaccination rate increased by 4 percent.
A randomized trial revealed the subtle power of "announcements" – direct, brief, assertive statements by physicians that assumed parents were ready to vaccinate their children.
This experiment is a part of an emerging field of behavioral economics—a scientific undertaking that uses insights from psychology to understand human decision-making. The field was born from a humbling realization that humans probably do not possess an unlimited capacity for processing information. Work in this field could inform how we can formulate vaccination policy that is effective, conserves healthcare resources, and is applicable to current societal norms.
Take, for instance, the case of Human Papilloma Virus (HPV) that can cause several types of cancers in both men and women. Research into the quality of physician communication has repeatedly revealed how lukewarm recommendations for HPV vaccination by primary care physicians likely contributes to under-immunization of eligible adolescents and can cause confusion for parents.
A randomized trial revealed the subtle power of "announcements" – direct, brief, assertive statements by physicians that assumed parents were ready to vaccinate their children. These announcements increased vaccination rates by 5.4 percent. Lengthy, open-ended dialogues demonstrated no benefit in vaccination rates. It seems that uncertainty from the physician translates to unwillingness from a parent.
Choice architecture is another compelling concept. The premise is simple: We hardly make any of our decisions in vacuum; the environment in which these decisions are made has an influence. If health systems were designed with these insights in mind, people would be more likely to make better choices—without being forced.
This theory, proposed by Richard Thaler, who won the 2017 Nobel Prize in Economics, was put to the test by physicians at the University of Pennsylvania. In their study, flu vaccination rates at primary care practices increased by 9.5 percent all because the staff implemented "active choice intervention" in their electronic health records—a prompt that nudged doctors and nurses to ask patients if they'd gotten the vaccine yet. This study illustrated how an intervention as simple as a reminder can save lives.
To be sure, some bioethicists do worry about implementing these policies. Are behavioral nudges akin to increased scrutiny or a burden for the disadvantaged? For example, would incentives to quit smoking unfairly target the poor, who are more likely to receive criticism for bad choices?
The measles outbreak is a sober reminder of how devastating it can be when the social contract breaks down.
While this is a valid concern, behavioral economics offers one of the only ethical solutions to increasing vaccination rates by addressing the most critical—and often legal—challenge to universal vaccinations: mandates. Choice architecture and other interventions encourage and inform a choice, allowing an individual to retain his or her right to refuse unwanted treatment. This distinction is especially important, as evidence suggests that people who refuse vaccinations often do so as a result of cognitive biases – systematic errors in thinking resulting from emotional attachment or a lack of information.
For instance, people are prone to "confirmation bias," or a tendency to selectively believe in information that confirms their preexisting theories, rather than the available evidence. At the same time, people do not like mandates. In such situations, choice architecture provides a useful option: people are nudged to make the right choice via the design of health delivery systems, without needing policies that rely on force.
The measles outbreak is a sober reminder of how devastating it can be when the social contract breaks down and people fall prey to misinformation. But all is not lost. As we fight a larger societal battle against alternative facts, we now have another option in the trenches to subtly encourage people to make better choices.
Using insights from research in decision-making, we can all contribute meaningfully in controversial conversations with family, friends, neighbors, colleagues, and our representatives — and push for policies that protect those we care about. A little more than a hundred years ago, thousands of lives were routinely lost to preventive illnesses. We've come too far to let ignorance destroy us now.