Thursday, January 14, 2016

Once more into the breach

New year - new resolve. I am trying again to chronicle the direction my life has taken since COPD has tried to become my defining characteristic.

I was a newspaper staff writer during my working life and also wrote grant applications and designed business publications and advertising copy. Along the way I have consistantly littered my floor with the detritus of what I considered self-indulgent efforts at poetry, opinions and other scribbling. Every single time, as I began to write, I became acutely aware of my failings and my presumption in writing down my ideas. Most recently my crippling criticism has been an insistent whispering that I am too old and not sophisticated or interesting enough.  I have been just too insecure to expect other people to pay attention to anything I have to say. I originally wrote  a few pieces about developing COPD after smoking for over 30 years, in this blogging effort I call "Breathe Easy." That ground to a halt - in part a result of a short-lived and ultimately brutally humiliating experience as a telephone "information line associate" at the COPD Foundation. I had posted some of those blog pieces on Facebook to underwhelming response while still with the COPDF. Once again, I wondered who would want to read about my experiences and/or insights. I thought, "Probably no one." and gave it up.

Heather King, a blogger whose essays and memoirs have very often spoken to me with uncanny timing when I needed them, one day said  that she began a discipline of writing four hours each day when she finally committed to becoming a "writer" and to submitting her work to others.  I am encouraged to make a similar promise to myself. I am also a writer, and writers write. Where it will lead, only God knows, but I feel like I am fulfilling a need I have been trying to deny for many years even as COPD does away with  many other interests and activities that used to define me.

In a quick update of the COPD that tries to manage my life for me...

The progression of my condition is for the most part manageable. I very recently began a medication new to me, Daliresp. It has been on the market for about a year. The list of side effects is formidable, but fortunately I don't seem to have any of them, so I have hopes that this medication will actually decrease the shortness of breath that accompanies any exertion on my part, leading to more activity. We shall see what we shall see.

Wednesday, October 22, 2014

Stem Cells - Treatment or Trickery in Today's World.

I work for the COPD Foundation’s Information Line. Today I heard about a clinic in Tampa, FL that will give a client "stem cell treatment" intravenously and by nebulizer to treat COPD. For only $7,500, a person can receive a temporary treatment. A temporary treatment for an incurable condition...hmm.  Repeat treatments are half price. How nice. 

I want to bring a website, closerlookatstemcells.org to the attention of anyone looking to access or even learn more about the option of stem cell therapy in today’s clinical arena. Stem cell research promises great advances in medicine. But those advances are still only promises. Do I think stem cell research is useful? YES! Do I think stem cell therapy has reached treatment status for COPD? NO!

Say what you will about the FDA, it is still the organization that protects Americans against fake cures and false promises. Snake oil can’t get FDA approval, and neither, at this time, can stem cell therapies for COPD. There is a saying about the mills of God: that they turn slowly, but they grind exceedingly fine. The FDA is kind of like that and although I would like to see more innovative treatments for COPD, I am encouraged by recent FDA approval of an inhaled drug combination with no steroid component and other new therapies. Tests are being conducted at universities and teaching hospitals across the country and around the world;  research scientists and physicians are plugging away diligently at new treatments for COPD sufferers. 

I am willing to suspend disbelief for the sake of enjoying a movie about aliens from deepest space, but that doesn’t mean I look for spacemen at the corner store. Expecting a cure for COPD from stem cell therapy today, means suspending disbelief at  a “space alien in line at the corner store” level. 

People with chronic incurable conditions like COPD are sitting ducks for charlatans with “cures the FDA and AMA will not sanction, because they are in the pay of the big drug companies.” 

If you want to support stem cell research and other research for COPD you might want to join the COPD Foundation Patient Powered Research Network Registry and volunteer for a COPD research study yourself. By signing up at the PPRN Registry you will join your health history and experience with COPD to those of thousands of others to expose trends and influence the direction of future research. You will also be given the chance to participate in other trials and studies that can directly influence the course of your disease. No one will ever make you participate in anything - your information and interest in the process is assistance enough to make a world of difference. 

Go to copdpprn.org today to register for the COPD PPRN Registry and keep hoping for a cure. Please read the consent form and data-sharing agreement carefully. The network will only include people who choose participate in the study. If you do not sign the consent form and data-sharing agreement, you will not be in the network. Remember that stem cell treatment for COPD is still in the - hopefully not too distant - future. If you would like to know more about the PPRN or have more questions about stem cell research, you may speak to a trained patient or caregiver associate, toll-free at 866-316-2673. It might even be me :)

Tuesday, October 14, 2014

Treadmill...who needs a treadmill?

Deciding to write about my experiences with having COPD at the urging of friends and family puts me in the position of being obliged to say something about the way I am feeling, or trying to get around my feelings, rather more regularly than I would choose, but understanding that it is the only gift I can give my loved ones and others who may be wondering how they are going to feel, or cope with or ignore their own feelings, based on their own issues,  I am willing to give it a go. I have to talk about my treadmill.

Of course, nothing else matters when you can't breathe, and many of us with compromised lungs have experienced the panic of feeling unable to catch our breath and resume breathing normally.  But, being completely unable to breathe is not often the routine state of affairs for folks like me with COPD; so it's more likely I will fall into the trap of not being able to breathe well enough to do something I want to do at the time, and therefore deciding not to do anything. Like not walking on the treadmill when I really can't walk outside.

I am my own worst enemy when it comes to staying ahead of the depression that can cloud my thinking and make me absolutely sure that the thrill of living is gone. I think it is important to remember that wisps of despair are always lurking, ready  to come looming in through cracks in my mind like malign spirits in old horror movies,  and must be assiduously pushed back out the way they are trying to push in, and not allowed  access to the space where my plans and goals for each day's activities are being evaluated and accepted. Because, it is from each day's decisions that weeks of depression are built.

No one starts out to be a constant victim of dyspnea (if you are going to be short of breath, you may as well know the snazzy name for the condition), or even worse, the threat of dyspnea. It's very easy to tell myself that no one else understands what it's like not to be able to catch my breath, or enjoy doing something,  and so I will just keep quiet, opt out,  and sit down somewhere out of the way to read a book, an activity that is almost guaranteed not to make me short of breath. Reading books is not the problem, either. Reading books is an excellent thing to do, and can be a source of great pleasure, but sitting alone and reading can become a prison without walls, a place where no one else is invited in and nothing is expected of me that will make me push myself to participate in life on any level. That is the problem. Books, crossword puzzles, Sudoku, computer surfing, television...even sewing or crafting, are  reasonable and pleasurable activities that must be put aside each day for periods of standing up and moving (if one wants to continue to be able to stand up and move...)

I am speaking to myself. I am all too aware that there will come a time when standing up and walking to the corner store will no longer be an option for me, and that that sedentary solitude is already the only life for many people with my same diagnosis, but for those of us who are choosing to live like that before it is forced upon us, thinking we can always change our ways if we want to, it's time to quit fooling ourselves. We are creating that reality and wanting people to feel bad for us. It remains to look into the corners of our minds for the dismal spirits lurking there, and force the depression out. It will take physical action to accomplish this.  In staring competition, depression remains  an odds-on favorite to win.

So, what am I getting at? Saying what is going on is always a useful thing for me to do. I can ignore almost anything that isn't being talked about, and since I spend a lot of time alone, talking about things often takes the form of writing about things for me. If I want to feel more positive and capable, I must be more active. So, it wasn't really a very smart thing to do to give away my treadmill because it didn't look particularly attractive in my front room, and now I can just buy another one. Sigh.










Monday, October 6, 2014

Monday afternoon not on La Grande Jattte.

Being part of a clinical trial or study is an opportunity to include  one’s own experience in what may be considered a pointillist rendition of disease and management plans that can produce a nuanced picture of the effect of specific medical models and the processes being used, unused or discarded to identify and treat the conditions being portrayed. 

The success or failure of an evaluation or treatment option does not stand or fall alone or perch only on a two dimensional x/y graph model but it is at its most comprehensive  when seen with the added dimensions of predicted and observed outcomes; both in real time and as as reported over time following the initial trial. This creates a picture out of the contradictory and complementary interplay of results laid down like spots of paint on a canvas.

Having made that assertion, it remains the individual points of color in the painting and the individual questions and quantifiable results in many many individual study experiences which result in the visual coherence that provides both the outline and detail of the “big picture.” 

This is the place at which I want to emphasize to individuals with COPD (still unaware perhaps that their particular speck of color is important and will change over time, always influencing the picture) the idea that they matter. 

I participated in one study of treatment options for the psychosomatic response to the COPD diagnosis and experience. I have been evaluated and turned away from Lung Volume Reduction Surgery and excused from involvement in a clinical trial for a non-invasive lung volume reduction medical procedure, either of which could have radically changed the nature of my condition for better (or for worse). Each time, the information gathered and the data added from my personal situation influenced the whole picture of COPD, as seen around the world.  Even though I recognized early on that this was bigger than me, I was disappointed - very seriously disappointed to be turned down for participation in the lung volume reduction study that I thought might change my life. Ironically that study was scrapped, before the first person was given the procedure (after they disqualified me) and the company is not even still doing business under the name used in that study any where that I could find in a cursory on-line search. 

I have currently been accepted for initial screening in my second try for a lung volume reduction procedure trial evaluating another treatment option for folks with COPD and other debilitating lung diseases and conditions. It’s a big picture.  

Monday, October 14, 2013

Who's Talking COPD Here?

Nothing makes an impression like a death sentence. When I heard the words, “You have Chronic Obstructive Pulmonary Disease (COPD),” and was handed a pamphlet to explain what that meant, I couldn’t believe it. I was complaining to my doctor because I had quit smoking and I wasn’t feeling much better than before I quit. I had quit coughing, and hacking up phlegm daily, but that was the only benefit I could see. I was still short of breath with any exertion; still got bronchitis and was sick on the couch for days with predictable regularity.  

“But,” I had explained: “I saw a chart! 20 minutes after you quit smoking your blood pressure returns to normal and twenty days later you can taste food again and twenty months later you have reduced your chances of heart attack and stroke by 50 percent, and twenty years later…” I had friends for whom this scenario was playing out in just that fashion. But not me. With COPD, all bets are off.  I was not going to get better. I was pretty sure I wouldn’t live anywhere near twenty years after this diagnosis.

My GP had broken the news to me and suggested I see a specialist. He had prescribed a Combivent inhaler for me with instructions to use it as much as four times a day, as needed.  This was when I quit smoking in 2005, about two years before I finally saw a specialist.  Chasing the story was out of the question any more so I had had to give up working as a journalist; then, two years later I couldn’t keep up as the executive director of a local arts council, either.  I was just 55, unemployable and in trouble.

I qualified for Social Security Disability in December 2007 with the benefit of an Ohio Medicaid spend-down so I finally could be treated by a pulmonary specialist  beginning in  February, 2008. That is the way it played out for me. Once I was out of work, I found out real quick that medical treatment is not really an option if you have no financial assistance through an insurance company or the state. It was the quest for medical assistance  because I had lost my insurance with my employment, that led me to Social Security Disability, Ohio Medicaid and two years later, Medicare. I will be forever grateful.

Diseases are often discussed in numerical values. In COPD, breathing out is measured; how much air you exhale, how fast you do it, how much air your lungs retain after you exhale and most importantly, perhaps, how much oxygen is in your blood at any given moment. I had dismal numbers when I had my first pulmonary function test before meeting with a Pulmonologist in February, 2008. My FEV1% (forced expiration volume as a percentage of normal during the first second) was about 23 percent of what was expected for my age, height and weight. That indicates really, really severe breathing impairment. There were other numerical indications of the severity of my condition, as well. And I simply couldn’t breathe when I did anything. I had to sit and breathe quietly to ease panic many times a day. I was scared all the time.

My pulmonary doctor gave me the right medications and after a sleep study, ordered O2 at night to keep my oxygen levels normal while I sleep. He also suggested I talk to the pulmonary experts at Ohio State University about surgery. I was dismayed but I was willing to do anything, even have surgery, to push back that death sentence. 

I began participating in the pulmonary rehabilitation program at St. Rita’s Medical Center in Lima, Ohio, also on the recommendation of my pulmonary doc.  By June, 2008, my FEV1% had improved to 27 percent during the testing at OSU and I could go a little farther during my six minute walk (another test). I was told I could wait and see about LVRS surgery. The improvement was due to getting the right medication and in no small part to the exercise and education I received by going to pulmonary rehab.  PR is a great program. Technicians are always present while we work out to encourage us and check our vital signs regularly, so we can push ourselves as hard as they want us to with no worries. 

Walking on a treadmill, using an exercise bike and lifting weights, as well as stair-step exercises were prescribed for me.  We took it slow, at first. I began with stretches and five minutes on a treadmill. I went to the hospital gym two days a week to begin with and then three days. As well as building my strength to exercise more and more, I was given instruction in how to breathe to reduce SOB (shortness of breath) and how to live better with COPD. That information included important dietary tips, suggestions to get around depression, ways to live more easily with reduced lung function, and how to avoid the bronchial infections that cause COPD to get worse quick.

I ended up graduating from the rehab program, and Medicaid quit paying for my exercise at the hospital, but I continued to work out there on my own dime.  It gives me more stamina, and more confidence when I am working to stay strong, pace myself, and breathe correctly.  Today, five years later, I still participate in a PR program; now at Firelands Hospital in Sandusky, OH, where I moved a couple of years ago. I have topped out with an FEV1 %  around 35 percent and holding. I don’t want to give the impression that one can keep improving indefinitely or  be cured of COPD. At this time there is no cure. But management is key to living as well as possible with this disease. I sought out the PR program in my new town, because there I can work out in the company of folks with similar stories (and abilities), and it’s a safe place to push myself.  The structure of going to a gym three days a week, keeps me honest about exercising.  It’s hard work to exercise when short of breath.  It’s easier to take a nap. The trainers in local gyms aimed at weight loss and physical training for athletes, probably don’t know much about COPD limitations and there will be no O2 available., or hospital staff in case of an emergency, God forbid. 

Earlier this year I was evaluated to take part in a clinical trial for a procedure that mimics LVRS without surgery. The company that makes the compound being tested eventually disqualified me because I didn’t retain quite enough air.   I was disappointed to be turned down for a procedure that I still believe might have made me feel better,  but it was inspiring to have such a comprehensive physical exam at the Cleveland Clinic and come out of it knowing I am holding my own through medication, education and exercise. 

Pulmonary Rehab has given me back a future.  Medication alone can’t make us stronger. Strong muscles use oxygen more efficiently. Everything we can do to give ourselves an edge, matters.  It becomes easier and easier to do less and less when one can’t breathe, and the situation spirals downward. Setting foot in a Pulmonary Rehab gym could be the step that turns YOUR spiral of increasing breathlessness and inactivity around.