Photo by Eric Stampfli

Return of the Canary


Photo by Eric Stampfli

I could not find an elevator on the lower floor of this church. With the memorial service about to begin on the upper level, I had two choices: transfer back in my car and drive to the second floor entrance in the upper parking lot, or wheel up a steep access road. I thought I’d get there faster if I wheeled, but halfway up the road, pushing hard against gravity, my chest started burning and my arms felt fatigued. I was running short of breath, but there was no turning back. The hill was too steep. Safer to go up than down.

At the top of the hill, breathing hard, I met my wife, who had driven there from work. I felt clammy, my arms ached and the burning pressure now ran all the way across my upper chest. I tried not to think about what may be causing it. Maybe a glass of water would help, I thought. I was just out of shape, or maybe it was heartburn.

The next night the burning pressure returned while I was in bed and I became concerned. After taking my blood pressure, concern turned to fear. My wife drove me to emergency at 3 a.m. When we arrived, the pain had subsided, but my blood pressure was still abnormally high. I was given aspirin and other blood pressure meds, then moved by ambulance to another hospital. The next morning I was wheeled on a gurney into a catheterization lab for an angiogram.

Until that day, my need for catheters had been limited to the urological kind. A doctor made a small incision in my groin and, using the femoral artery, snaked a long cardiac catheter to my heart, where it would release dye so images of my coronary arteries and heart could be studied. The next thing I knew I was looking at a screen, still on the gurney, drugged, drowsy. A voice was saying, “There it is, see it? Looks like they’re all blocked. Stop the film there. See it?”

Until this moment I had never seen my heart in action — arteries and tiny capillaries doing their jobs. It was clear, even in my drugged state, that something didn’t look right. At a point just before the blood flow reached my heart, the major arteries all seemed filled with blood. Then, suddenly, as if a faucet had been turned down to a trickle, the blood flow diminished to a small fraction of what it had been just millimeters before. “Ninety percent blockage on all major arteries. Looks like three to five grafts are needed. Stents won’t do any good at this point. You’re a good candidate for a multiple bypass.”

Under the Knife
Coronary artery disease is the number one killer of men and women in the United States. It is also the leading killer of people with spinal cord injuries of 30 or more years. They call it the silent killer for good reason: One-third of all people with the disease never know they have it until they experience a heart attack. I would like to say that my problems began when I was wheeling up that steep grade, but the truth is the disease process began in boyhood when I discovered buttered toast and fried eggs, hamburgers and milkshakes, grilled cheese sandwiches and ice cream sundaes — and lying on the floor watching television for hours on end.

Tim Gilmer and his wife, Sam, celebrate a healthy new lifestyle on the one-year anniversary of his quintuple bypass heart surgery, in Kauai, Hawaii.
Tim Gilmer and his wife, Sam, celebrate a healthy new lifestyle on the one-year anniversary of his quintuple bypass heart surgery, in Kauai, Hawaii.

It took more than 50 years for my arteries to become 90 percent blocked, and until I felt the burning pain and saw the blockage on the monitor, the only advance warning I had was numbers on a chart — high blood pressure. No pain, no bleeding, no headaches directly traceable to it, no shortness of breath. However, the night before my bypass surgery, just 12 hours after my angiogram, I started experiencing angina, a different kind of pain than I had ever felt, and I never want to experience it again.

The pressure and pain were scary, getting enough oxygen — even while breathing deeply — was difficult, and the angina kept returning despite the nurse giving me nitroglycerin several times. It seemed nothing could stop this pain. Just prior to this long night, I had dreaded open-heart surgery. By morning I was begging to go under the knife.

The good part of having your breastbone sawn in two and “cracked open” is that you are knocked out, dead to the world when your heart is stopped  and your blood re-routed to a heart-lung machine and back to your body while surgeons take veins from your leg and graft them into your heart. The bad part is you must recover, which isn’t easy, especially if you are a non-ambulatory wheelchair user: Walking is the main mode of recovery, and coronary artery bypass patients are encouraged to begin walking immediately.

When you wake up in ICU, the first thing you are told is to breathe as deeply as you can several times a day — to begin the process of restoring capacity to your lungs, which hurt with each deep breath you take. You are given a breathing device to measure lung capacity. It is critical to get past this challenge so pneumonia does not set in.

The second thing you are told, whether disabled or nondisabled, is not to use your arms for lifting, pushing or pulling more than 5 pounds. If you use a manual wheelchair and you’ve depended on your arms for everything you do, imagine being told not to use them, or to use little or no force. No stretching, straining or reaching across your body. All this to ensure that you won’t stress your sternum, which has been laced together tightly with wire that passes through several holes drilled in it, so the bone will knit together and heal completely. You are wearing a corset made of solid bone. If it doesn’t heal completely, you’ll be in for pain and complications for years.

Turning in bed, sitting up in bed, dressing, transferring and toileting all require a personal aide. Driving is out. Six to eight weeks of strict adherence to “sternal precautions” is necessary to heal sufficiently before you can become more active. In three to four months, you can pretty much resume your normal routine, if bone has healed solidly. Six months post-op, if all goes well, you’re as good as new. Better, in fact, since your pump now has all new pipes.

But you’ll never look at hamburgers and milkshakes the same.

Denial: The Great Deception
When I said I had no CAD warning before being told that bypass surgery was needed, that was a lie. But it was only a lie as I look back on it. At the time it seemed like the truth. Men are masters of denial.

Women are also slow to admit they may be at risk. With men, it’s in our nature to deny weakness or illness, part of the male myth of superiority. Women have been so consumed with other fears — breast cancer and ovarian cancer in particular — that heart disease, even though it kills more women than any other disease, has traditionally been downplayed, both by the medical establishment and women themselves.

And what about those of us with chronic disabilities related to joint, muscle and neurological impairments? Denial is a way of life for us. Most of us live with pain every day. We learn to cope with it, to persevere despite it. New pain that is not related to our usual pain must rear up and smack us in the face to get our attention. Denial is second nature to us.

Coronary artery disease is all about risk factors. To successfully manage or prevent it in the first place, we must recognize and rein in the risk factors that are controllable — and learn not to worry about those that aren’t [see sidebar and additional story below]. We must overcome our natural propensity to deny pain and disease.

CAD impacts the heart, but it’s really about arteries and veins, blood chemistry (especially cholesterol levels), oxygen supply and blood pressure. The problem lies in fatty deposits — plaque — that narrow arteries and restrict blood flow.

Think of your coronary arteries as mine shafts. If there’s a cave-in that blocks a shaft, the immediate danger, if you survive the cave-in itself, is lack of oxygen. The cardiovascular parallel is an eruption of unstable plaque that forms a blood clot, blocking oxygen from getting to the heart. Generally speaking, a heart attack, if not instantly fatal, leaves the victim about one hour to restore oxygen supply to the heart before cell death and permanent damage occurs.

The Membrane Separating Life from Death
Angina is a symptom of oxygen deprivation to the heart muscle. But this kind of pain does not necessarily mean a heart attack is in progress. However, it is a dire warning. In my case, wheeling up a steep road was equivalent to a stress test conducted on a treadmill. Angina struck when my heart could not get enough oxygen, but I denied the cause of the pain, wishfully thinking it came from some relatively benign cause.

Angina feels similar to heartburn, but it can also feel like muscular pain and is not always localized in the heart or chest. It can be felt in the back of the neck, shoulders, arms or upper back, and it can travel. Women, in addition to experiencing classic symptoms, sometimes feel abdominal discomfort, nausea or unexplained weakness. Although similar to other kinds of pain, angina is unique — a combination of pressure, tightness, burning and dull ache. It is not a sharp stabbing pain. When I experienced angina while lying in bed a day after wheeling up the steep road, the pain began in my shoulders and neck before moving to my chest.

Basic warning signs had been there for years, but I failed to take them seriously. I knew I had high blood pressure for several years before I began taking medication to control it. Three years prior to my bypass operation, because I had experienced three instances of dangerously high blood pressure despite being on antihypertensive medication, my doctor had ordered a cardiac perfusion scan — a chemical stress test for someone who cannot perform a treadmill stress test. First, images of my heart muscle were taken while I lay prone in a semi-open imaging machine. Blood flow within my heart was evaluated visually and digitally. Next, in a different room, an injection of thallium made my heart pump faster, just as if I had been exercising vigorously. Technicians and nurses attended me, monitoring my blood pressure and an electrocardiogram scope to track any abnormalities. Then I returned to the imaging machine for more pictures — a classic “before and after” test.

The results showed that 3 percent of my heart muscle was not getting sufficient oxygen [ischemia], but there was no damage. To me, having perfected the logic of denial, 3 percent was no big deal — it meant my heart was performing at the 97th percentile. Not bad, I reasoned. Doesn’t 97 percent earn a grade of “A”?

On the basis of this test, my doctor advised me to assume that I have coronary artery disease. I did, but I thought we had caught it early. What I didn’t understand was that a 3 percent oxygen deficit does not equate to 3 percent blockage. A major artery can be 50, 60, 70, or even 80 percent blocked, and the heart muscle can still be getting sufficient oxygen — with no warning pain. The imminent danger is invisible, just as a mine shaft can conceal hidden stress fractures before it suddenly caves in.

Where heart health is concerned, it is as if an invisible line, a membrane, separates sufficient from insufficient, good from bad, life from death. One day the heart is working perfectly, and the next day blood flow crosses the invisible membrane separating sufficient from insufficient, and like the straw that broke the camel’s back, the world comes undone.

The good news is that CAD, once identified and accepted as reality, can be treated successfully. The processes responsible for plaque build-up in the arteries can be controlled — some say they can even be reversed — with proper diet, exercise, stress management, self-control and medication. And if a serious heart attack can be avoided, the heart muscle can continue to pump effectively for a normal lifespan.

I was born in 1945, one year prior to the “official” beginning of the baby boom. When I became paralyzed in 1965, the leading causes of death associated with spinal cord injury were kidney failure and pulmonary complications. Now that treatment options have improved and we are living longer, coronary artery disease is the leading cause of death in people with SCI over 60.

While I did not experience a cave-in, I lingered far too long in a hazardous coronary mineshaft. I’m the lucky canary, the one who returned, and I come bearing a message: don’t smoke, eat smart, and move more, however you can.


Eat Smart

Being overweight or obese is a risk factor for coronary artery disease, and if you’re a wheelchair user, your chances of being overweight are better than if you are ambulatory. But remember the pitfalls of dieting: It’s easy to drop 10, 20, 30 or more pounds if you’re a serious dieter, but when you tire of denying yourself, the pounds start creeping back.

Most of us choose our food by the way it looks, smells, and tastes. If that’s how you decide what and how much to eat, you may never lose weight. And if your motivation to lose weight is to look better, sooner or later you’ll tire of being tough on yourself and the motivation fades. The trick to keeping weight off is to turn on that switch in your brain that changes the way we think about food. It’s not about enjoying food or looking good, it’s about choosing life.

However, it’s not that easy. For me, it took quintuple bypass surgery to turn this switch on. I don’t recommend that route for anyone.

But anyone can activate the “choose life” switch if they accept that some level of plaque has accumulated in their arteries. Envision it, and realize that eating smart for many of us who get little or no exercise is a life and death challenge.

First, eliminate or drastically reduce saturated fats and cholesterol, the main ingredients in arterial plaque. Get in the habit of reading labels before buying or eating. Total calories, calories from fat, and cholesterol are number one on your search and destroy list. Limit sodium intake to help keep blood pressure low. At the store when you pick up a half-pint of Ben and Jerry’s Jamocha Almond Fudge Ice Cream and the fat and cholesterol numbers jump out at you, your craving will waver. If you’re committed to eating smart, you’ll envision plaque building up and arteries narrowing with each imaginary bite. Now put the container back in the cold case and reach for the sorbet. No fat, no cholesterol, no plaque. You don’t have to deny your sweet tooth. Just make a better choice.

If exercise is difficult or impossible, for most people a daily intake of no more than 1,200 calories, with less than 20 percent calories from fat, is necessary to lose weight. That doesn’t mean you can’t eat meat. Trim all the fat off a steak or buy extra lean hamburger. Eat fish, especially wild salmon, which is rich in oils that reduce harmful LDL cholesterol. Remove skin from chicken and “go light” on cheese – the lighter the color, the less fat. Eat plenty of fiber. Choose whole grain bread over white, but whatever you choose, dip it in olive oil – the “good” fat. Another oil – made from flaxseed – is a good source of beneficial HDL cholesterol, which is usually lacking in those who get little exercise.

Yes, fruits and vegetables can be boring, but find the ones you like and think how you are treating your heart right every time you eat them. Feel  clean inside and get regular all at once. If you tire of eating salads, sprinkle them with sunflower seeds or sliced almonds, dried cranberries, croutons, and a tasty low-fat dressing. Buy a prepackaged mix of organic greens and add it to romaine lettuce (the best for nutrition). Switch lettuce types if you lose interest. There are more than you know. Try different low-fat dressings for variety so you don’t burn out on salad.

Lay off soda pop and drink plenty of water. Eat slowly and savor the good choices you are making. The slower you eat, the more time you give food to settle and make you feel full. Don’t forget to reward yourself for doing the right thing. Eat dessert, but eat smart: Cold cases in groceries are bulging with low-fat and no-fat desserts these days. Ever tried a Skinny Cow low-fat ice cream sandwich?

What about vitamins and over-the-counter items? Vitamin C and E are antioxidants, but research is inconclusive about their effect on heart health. A half-aspirin a day will reduce the likelihood of blood clots, but check with your doc first. Also, have your cholesterol checked and know what the numbers mean.

Think smart, act smart, eat smart – and live longer and healthier.

♦ Who is at Risk for Developing Coronary Artery Disease?:www.nhlbi.nih.gov/health/dci/Diseases/Cad/CAD_WhoIsAtRisk.html


Rx For Heart Health: Move More

David Calvert, 64, a lawyer in Wichita, Kan., was driving to work one day in June 2005 when he felt an odd “fluttering” in his chest. Something told him to stop by his doctor’s office. The fluttering turned out to be evidence of severely blocked coronary arteries: One quadruple bypass later, he began life anew, this time paying strict attention to diet and exercise.

But exercise did not come easy. Calvert had been experiencing symptoms of post-polio sequelae since before 1982. That was the year his therapist convinced him to “decommission” his braces and crutches and start using a wheelchair. Since then he has dropped the “use it or lose it” mantra and adopted the new PPS credo: “conserve to preserve.”

However, when the primary Rx of heart health is regular aerobic workouts, how can polio survivors, movement-limited quads and people with muscular dystrophy, those with MS and others who experience fatigue, get their much-needed exercise? Answer: However they can.

“I just had to use common sense and learn my own limits,” says Calvert, who constantly “listens” to his body for signs of fatigue. He pushes his chair around a track, not fast, he says, “just enough to get my heart rate up. Just pushing a chair around everyday is good exercise,” he says. “I feel better and I’ve lost weight. I’ve had to learn what I can and can’t do.”

Steve Currier also began experiencing fatigue, or so he thought, but Currier is a T10 para. He started losing stamina when pushing his chair and getting short of breath. Transferring had become increasingly difficult. Then one day, working outside, he felt pain in his left arm. “I just couldn’t get a good breath,” he says. “We live less than 10 minutes from a hospital, so somehow I piled into the car and my wife took me to emergency.”

The next thing he knew, through a morphine-induced haze he heard a nurse saying, “Glad to have you back.” He had been “paddled back” to life three times on the operating table.

Currier had not suspected coronary artery disease. He was not aware of any high blood pressure. No previous pain, no family history of heart problems. His dad, still living, is in his 80s. Currier was 52 when his heart attack struck, fortunately just after he arrived at the hospital. “You don’t think something like this can happen to you,” he says.

For the past year he has been working on regaining independence at Brackenridge Brain and Spinal Rehab Center in Austin, Texas, where he walks on braces using a walker. Just recently he has started riding a new Top End handcycle. “I just feel better after I do it. It’s amazing how much exercise does for you.”

I can also testify to handcycles being good exercise, and fun, having purchased a used Top End XLT in September. I’ve lost weight and built stamina. Lesson? Having fun is an added motivator to exercise.

But what if you can’t crank a handcycle or walk on braces or push a chair around a track?
Evidence indicates that passive exercise machines [NM July 2007, “Passive Exercise Systems: Gain Without Pain?”] help with circulation and prevent blood pooling in lower extremities. It’s a short leap to assume cardiovascular benefits, but no studies prove this as yet.

Functional electrical stimulation, on the other hand, has been proven to raise your heart rate and provide an aerobic workout. Christopher Reeve, whose SCI level was as high as they come, experienced significant overall health gains with FES. [His death was not caused by coronary heart disease]. FES research has shown cardiovascular benefit at least equal to that of cranking a handcycle.

Swimming, weightlifting, universal gyms, the evidence is clear: For heart health, move more — however you can.


Exercise Resources

Functional Electrical Stimulation:
♦ FES Information Center, 800/666-2353; fescenter.case.edu
♦ Therapeutic Alliances, 937/879-0734; www.musclepower.com
♦ Restorative Therapies, 800/609-9166; www.restorative-therapies.com

Passive Exercise Equipment:
♦ Exercycle (Theracycle 100 and 200), 800/367-6712; www.theracycle.com
♦ EX N’ FLEX International (Canada), 888/298-9922; www.exnflex.com
♦ Flexiciser International Corp., 888/353-9462; www.flexiciser.com
♦ Motomed (Germany), 800/678-8005; www.motomed.com
♦ Restorative Therapies, Inc., 800/609-9166; www.restorative-therapies.com
♦ Southwest Medical, 800/236-4215; www.southwestmedical.com/THERAvital

Handcycles:
♦ Freedom Ryder, 800/800-5828; www.freedomryder.com
♦ One-Off Titanium, 413/634-5591; www.titaniumarts.com
♦ Quickie Shark, 800/236-4215; www.quickie-wheelchairs.com
♦ Top End XLT, 800/532-8677; www.invacare.com
♦ Varna Handcycles, 250/247-8361; www.varnahandcycles.com
♦ The Handcycle Store, 888/424-5366; www.bike-on.com
♦ NuStep, 800/322-4434; www.nustep.com

Other Exercise Equipment:
♦ Apex Designs, 800/851-1122; www.apexeq.com
♦ RMT Fitness, 800/577-4424; www.grouprmt.com
♦ Three Rivers Holdings, 480/833-1834; www.3rivers.com
♦ EasyStand Evolv (w/handcycle), Altimate Medical. 800/342-8968; www.easystand.com/pressroom/


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