The COPD Solution

PART 1

LIVING WITH CHRONIC LUNG DISEASE

CHAPTER ONE

When You Can’t Breathe, Nothing Else Matters

              When you own your own breath, nobody can steal your peace.

—AUTHOR UNKNOWN

I’d like to introduce you to Linda. Linda is 64 years old, 5’4” tall, and weighs 155 pounds. She has been diagnosed with chronic obstructive pulmonary disease (COPD), an umbrella term commonly used for the combination of any two of the following chronic lung diseases: emphysema, chronic bronchitis, or asthma. Linda was diagnosed four years ago. A recent test of her breathing function placed her in the Stage III category for COPD—that is, severe. This is the story of the first time I met her. Her story may remind you of yourself or someone you love.

I had already started my assessment of her before we were even close enough to speak. Linda has short, brown hair. It has been cut, I am assuming, for easy upkeep (most patients with her condition struggle to perform tasks above the waist). She has dark, deep-set eyes, and wears no makeup. Although she is Caucasian, her skin has a slight natural tan. She has a few more wrinkles than do most people her age. Her movements are very slow and deliberate, and she kind of shuffles when she walks, as if it is an effort to lift her feet.

Linda is quiet and concentrated. She looks focused as she approaches me. Her breathing is labored, and I can hear her wheezing and see the retractions in her neck as the gap between us shrinks. Her mouth is drawn slightly open, her lips curling inward just a bit. It pronounces her cheekbones in a unique way. I have seen many patients in her condition hold their mouth this same way in an effort to “catch more air.” I make a mental note to review proper breathing techniques with her as soon as possible.

Looking out the window, I notice the silver car she exited is parked in the first handicapped spot by the door—that’s only 60 feet or so from where she is, but it has taken a great amount of effort to get here. It’s safe to assume she will need a rest soon, and that she has to rest countless times throughout her day.

Finally, she reaches the door to my office. “Hi Linda, I’m Dawn,” I say, and motion toward a chair in my lobby. She quickly accepts the invitation to sit but can’t quite thank me—not yet. She’s too breathless to speak. After a few minutes of silence, except for the hissing of the portable oxygen tank she has brought along with her, she thanks me for my patience and indicates that she is now able to proceed. As I talk to her, and having reviewed her pulmonary function paperwork from her physician, I mentally catalog my list of her signs and symptoms. They include:

Breathing Symptoms

     •   Severe dyspnea (shortness of breath). Even resting, she has extreme difficulty completing a short sentence in one breath.

     •   Wheezing

     •   Productive cough

     •   Retractions (a sucking in of the skin around the bones in the chest cavity during inhalation)

     •   Air trapping (when air gets trapped in the lungs due to a decrease in lung function)

     •   Hypoxia (low oxygen levels)

     •   Lung function testing shows a decreased FEV1 (amount of air you can exhale in one second) that is 28% of the expected volume

Other Physical Symptoms

     •   Extreme fatigue

     •   Severely reduced physical activity

     •   Muscle weakness. She is shaking, and, although her oxygen tank is on wheels, her daughter rolls it in for her.

     •   Deconditioning (a condition in which there is a reduced functional capacity of the body due to chronic illness)

     •   Barrel chest (a widening of the chest cavity due to air trapping)

     •   Ankle swelling (indicative of heart problems)

     •   Digital clubbing, also called “drumstick fingers”: An enlargement or bulging of the tip of the finger with a downward curvature of the nail, caused by chronic hypoxemia (low oxygen levels in the blood).

     •   Cyanosis (a bluish/gray color of the nail beds, caused by low oxygen)

     •   Nutritional deficiencies

Emotional Symptoms

     •   Extreme anxiety

     •   Depression and hopelessness

Exacerbations (Flare-Ups)

     •   Recent exacerbation of pneumonia

     •   A recent hospitalization

     •   1–3 exacerbations yearly; at least one hospitalization yearly

Clearly, Linda has a lot to handle. I notice during the course of our conversation that she is on 4 liters of continuous oxygen via nasal cannula (a plastic tube device). She states that it is on that flow 24 hours per day. She also has hypoglycemia, also known as low blood sugar, and atherosclerosis, hardening of the arteries. She has a twenty-five-pack-year (at least one pack per year for twenty-five years) smoking history.

Her medications include a series of nebulizer treatments every four hours; oral medications for mucus control, anxiety, and depression; a combination inhaler to be used daily; another inhaler to be used twice daily; and yet another inhaler for emergencies. Her closet is full of oxygen tanks (I remind myself to talk to her about safety later), and her concentrator is located in her bedroom, where she feels she can properly control it at night.

Linda appears just as I expect a Stage III COPD patient to appear and presents a classic situation common to those with her diagnosis. She makes it known that she is very, very reluctant to meet with me. Her exact words are, “I am just going to die, anyway. I don’t know why I am here.”

When I hear this, I assure her first of all that she is not alone in feeling this way. But I ask, “Are you interested in staying if I promise that I can help you feel better?” This brings about a look of skepticism—a sideways glance of doubt. I invite her to stay, as I know, given the chance, I can change her mind. However, I can also tell she is going to be difficult to convince of this, so I ask her to list her concerns and tell me about herself. For now, I just listen.

During our conversation I find that she can only talk for a couple of sentences at a time, even with intermittent breaths carefully placed between words. Even then, she needs additional time to catch her breath. After these rests, the color returns to her lips and the tip of her nose, the gray fading back to pink. Also, her heart rate (I can see her pulse bounding in her neck) and respirations return to baseline when she rests. I wonder how much she would say if she weren’t so limited. I wonder how much she used to smile and laugh when she spoke.

It takes a while, but I learn that Linda has three children. One of them, a daughter, passed away as a young adult. Her other daughter, who’s brought her to the appointment, lives nearby, and her son lives in another state. She hasn’t seen her son in three years because she can’t go to him. The last time she tried, her oxygen tank ran out and she almost died. In addition, the presence of his dog makes it so she can’t breathe. He doesn’t have enough money to come and see her, and won’t take the money she offers him to come. She recently gave her own dog away because the doctor said it would improve her breathing. She also gave her birds away last week. She cried about that.

Linda just had hardwood flooring put in her home, to prevent dust and dirt from building up in her carpet, and to avoid the need to vacuum, which she can’t do any more. Her friend’s son just moved into her basement in order to do household things for her, such as retrieve the mail, carry the laundry, and do the grocery shopping. She has someone come in to clean her house every other day, and her daughter and granddaughter bring her meals in or come over to fix them for her.

I learn that she used to like to gem hunt and spent a great amount of time doing so. She and her late husband, who died of COPD almost ten years ago, used to hunt, and make jewelry and furniture. She likes to quilt, but it’s too difficult to do anymore. She hasn’t done any of those things in a really long time, but she does still love to read. She used to enjoy watching her grandchildren play soccer. But most recently she doesn’t have energy to do much of anything. In fact, making it to her doctor appointments is so much of an excursion she needs an entire day, or two sometimes, to recover.

She used to love to cook, but like so many other things, that is now too difficult to do. One of her greatest joys used to be fixing nice meals for her family. She used to be able to shower by herself, but now she can’t. Her doctor has told her she is probably only going to live another year or so, and so she asks, why should she waste any of her time here?

Her daughter now interjects: “She used to be ‘the life of the party.’ Now, she just sits back and watches everything. She doesn’t participate in life anymore. It’s just not her. It’s like this—” she motions her hands toward her mother “—is a shell of who my mom used to be. She’s a ghost.” Linda doesn’t argue. Instead, she turns her eyes to the floor.

After a moment Linda speaks again, hinting toward some of her fears, but I get the impression she is scared to trust me with too much personal information, so I decide to move to the next step. The last thing I’m interested in doing is fostering any feelings of doubt.

“Can we try something called a six-minute walk test?” I ask. She has never heard of this before, but I’m not surprised, as most of my new patients haven’t. This test is designed to establish a baseline for a care plan, determining what patients are capable of tolerating, and witnessing the degree of strength or weakness they are suffering from at any one particular moment. She looks at me suspiciously but doesn’t answer. I wonder what is going through her head.

I smile at her and reassure her that I will walk with her, that she can rest whenever she needs to, and she only has to do what she can tolerate.

I set my timer, take Linda’s hand and help her up, pick up her oxygen tank, and place an oximeter on her finger. An oximeter is a noninvasive device used to measure how much oxygen is in the blood, and, therefore, how much is available for the cells. And then, we begin to walk.

The circle we walk is 75 feet in diameter. We make it halfway around before she has to sit down and rest. I quickly lead her to the chair I had previously set aside for this occasion, and help her sit down. Her oxygen saturation levels, or sats, indicated by a number on the oximeter, started out at 94 percent on 4 liters of supplemental oxygen. Although she remained on her oxygen, that number is dropping now, and fast: 87 . . . 83 . . . 76 . . . 70 . . . 68. It finally stops.

Linda’s anxiety is palpable. I can feel the crisis emanating from her. I look in her eyes to get her attention and focus on one not-so-simple thing: breathing. She puts her hand up, as if to stop time, or me, or everything, and closes her eyes as she tries to breathe. “Linda,” I say gently, “look at me.

“In through your nose, then out through your mouth, like you’re blowing out a candle.” I say in a soft, calm voice. “This is the best way for you to recover, Linda. Do what I’m doing,” I tell her. I demonstrate for her again. I inhale through my nose, and blow out through my pursed lips. In, and out. In, and out. “That’s right. Smell the cake, blow out the candles. In, and out. In, and out.” This goes on for one and a half minutes (which incidentally, can feel like an eternity). Again, her lips change from that familiar purple-blue to red, and the ashen coloring of her skin is replaced with a natural pink color. Her shaking is subsiding, and her heart rate, which had climbed to 148, is now returning to baseline.

I am not surprised to witness that she doesn’t know how to perform pursed lip breathing. Although it is vital, most patients don’t. We repeat the whole process as soon as she can walk again. We make it halfway around again, an echo of the same routine. This continues as the timer counted down the six minutes that it’s been set for. Soon the timer rings, and her walk is complete. In total, she makes it around the circle almost four and a half times. Three hundred-thirty feet in six minutes’ time, with four rests. Not at all that impressive.

After her walk and recovery, we talk more about her condition, her medications, her family, and how she feels about everything in general. Her depression is evident as I listen to her almost mourn her life. I explain what my program is, what we would do in it, what we would talk about, and how it would take place. She asks many questions, among others patients commonly ask, such as:

     •   What is COPD?

     •   Am I going to die? When?

     •   I know I need the oxygen, but why? How does it work?

     •   What exactly do my medications do?

     •   What will I get out of this program? How will I change? Will I change?

     •   Will I always be on oxygen?

     •   Will I ever get any better?

     •   How did I get this disease?

     •   What exactly has happened to my lungs?

     •   I. Can’t. Breathe. Please help me. Can you really help me?

     •   Why did I do this to myself? I feel so guilty.

I explain a few of my expectations. I tell her I can help her, and teach her why she should “spend” some of her time here, and why it would not be a “waste” but actually, a really great investment. We also set goals. I tell her:

     •   I expect you to improve dramatically, if you do what I tell you to do. You will be surprised by how well you do.

     •   I will not hurt you. I promise.

     •   Did you know some foods make it more difficult to breathe? You will learn what to eat.

     •   You will get stronger.

     •   You will learn about your oxygen.

     •   You will learn about using energy.

     •   You will learn about your muscles and how your body uses oxygen.

     •   You will learn how to properly breathe.

     •   You will learn how you got this disease and what has happened inside your lungs so you can better understand what your struggle is.

     •   You will learn how to cough the right way. This will help with your mucus.

     •   You will learn to take your meds the correct way so they will help you the most.

And more important:

     •   You will improve so you can try to go see your son again.

     •   You will be able to do things, such as cook, on your own again. There are tricks I can teach you to do this.

     •   You will not only walk around this entire circle all at once (I motion to the circle she just walked that just about killed her), but you will actually walk much farther.

     •   You will do things you used to enjoy again.

     •   You will do these things in only a few weeks’ time.

     •   You will learn why and how you can still live, not spend your time waiting to die.

Slowly, tears roll down her cheeks. Those same haunting eyes stare through me. She nods her head. Her daughter—who had pulled me aside earlier and held my hands as she begged me to save her mother, that I was her last hope—cries and mouths the words thank you.

Linda was scared, and my assumptions were correct—she was a difficult case. She was very, very sick. But, I had been successful in convincing her to try my program. Our first victory was won.

That was four years ago. Three years (and counting) past the time her doctor told her she would die.

When you hear the rest of her story, you will cry tears of your own—and maybe, for the first time you will feel hope for yourself or your loved one. But first, let me introduce you to the program that saved Linda’s life.

The COPD Solution is a comprehensive, 10-step program for managing life with chronic lung disease. It bridges the gap between merely surviving, or just “getting through” each day, and completely thriving. It’s about treating, educating, and implementing lifesaving modifications for anyone suffering with COPD.

THE COPD SOLUTION—A PROGRAM THAT REALLY WORKS

I developed the COPD Solution in a pulmonary rehabilitation facility a few years ago for two reasons. First, there is a general lack of information available for patients, to help the progression of their health and to reduce the deterioration of their condition. Second, I needed a program that could be tailored individually to my patients—their specific needs, routines, abilities, desired outcome, family, and lifestyle.

I’m happy to say that, having used this program with hundreds of patients, the results have been amazingly successful! Impressive to physicians, patients, and their families was how completely life-changing the program was for everyone involved. What surprised everyone was that there is a 100 percent success rate with those who followed the program. While it is not a cure for COPD, everyone benefited from its focus on its simple methods to obtain optimal well-being. Patients were able to recapture their lives, and family members gained their loved ones back.

Not unlike assembling a puzzle, with each day and week that passed, these patients put another piece of their lives back together. In the medical world, certain results are expected when one puts certain actions into play. Generally speaking, if you are going to perform a particular procedure on a patient, or recommend a particular type of care, science dictates what the physical outcomes will be. I knew what I expected to take place physically with these patients. I knew what to do to help “fix” their body. However, emotions are different. They have far too many variables to truly be able to anticipate results. When working with individuals, all of whom are so different—they come from different backgrounds, have different life experiences, and cope with things in different ways—it stands to reason the emotional impact of any action can vary widely. So, I was not prepared for the overwhelmingly positive changes that took place. The emotional and mental improvements patients experienced during participation in my program moved them upward in leaps and bounds. Someone who once saw no reason to get up in the morning and had lost all hope in life was now laughing and enjoying friends and family again. How do you place a value on that?

The program itself guides you through every aspect of living with your COPD condition and addresses virtually all situations that may arise. Making your way through this maze may be new, or not. But there are a few things that are universally consistent with everyone I have treated and spoken with, worldwide, regardless of how long ago or recent their diagnosis was made. They are:

  1.   A need for greater education. There is, universally, a drastic lack of education about COPD and lung illnesses, and such a small percentage of patients have any sort of solid base of knowledge of what they are suffering from, let alone how to successfully live with it, properly and safely administer medications, use of oxygen, specific safety measures, return to enjoyable sex, and so much more, or that it is possible to do so. With this book, you will become much more informed about your condition.

  2.   Overwhelming and debilitating anxiety and depression: when you can’t breathe, nothing else matters