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Sunday, December 22, 2013

A Day in a Life with COPD, Time for those New Year's Resolutions

Anyone who works with people nearing the end of their lives has shared the heartbreaking lamentations of regret in their lives. We hear about unfilled dreams out of resistance in leaving comfort zones, poor choices which carried consequences, crippling fears, going through the motions of life rather than living it, not spending enough time with loved ones, too much work and too little play.

Being the mortal creatures we are, it is expected that our physical bodies will eventually fail us. But it is absolutely tragic when by not taking care of our health while we had it, people sink into the downhill spiral of chronic disorders and disease.

COPD, chronic obstructive pulmonary disease, is the fourth major cause of death in the USA.
Far too often, people smoke for years and know full well about all the warning labels. They get irritated with all the nagging from loved ones about what could happen down the road. But at the time, down the road is down the road, not a reality when the desire for a cigarette is what is important in the now. Feeling fine for years, a good bout with bronchitis or pneumonia can become the beginning of a very unwelcome chapter in life.

Let me take you through an ordinary day for someone living with this chronic condition. A condition that has no turning back, only a dismal future as lung function slowly deteriorates.

Another day of feeling disappointment with even waking up. Depression goes hand in hand with COPD patients and most of them are on anti-depressants and/or anxiety medication. Emotional depression is a problem in itself as it lowers the immune system and puts a body at higher risk for further health problems. Lack of interest in anything usually results in lack of physical and mental activity, and far too much time simply staring at the television.  Lack of movement further weakens the body and increases loss of muscle mass. Eventually, simply getting dressed can cause shortness of breath. Lack of mental stimulation results in cellular death in the brain.

COPD patients are repeatedly told that their lungs are a muscle and to not exert themselves will result in an acceleration of loss of function. It is a double edge sword. Exertion results in shortness of breath. Shortness of breath results in anxiety and panic. The fear of not being able to breath is very real and that fear can become paralyzing. So rather than working through all the purse lip breathing and relaxation techniques taught by the therapists, patients too often choose to do as little as possible in their attempts to avoid the inevitable panic. To panic usually results in breathing too fast, too shallow and  hyperventilation is the outcome.  They forget all about the slow, deep inhale (count to 5), long slow exhale (count to 10) pursed lip technique. Caregivers walk on eggshells, always wondering when to call 911. Feeling helpless, we try to walk them through the slow breathing, give an anxiety pill, use the albuterol nubulizer, and hope for the spell to pass. The use of a finger pulse oximeter lets us know what is the blood oxygen rate. As long as it is in the 90's we're supposed to rest assured the patient isn't going to die in front of us, he or she just needs to calm down. If the rate is in the 80's then there is reason to rush to the ER. That is little comfort for the person struggling to take a breath.

Oxygen is life. When the body is deprived of enough oxygen, cells die. Brain function declines right along with the strength of the body. COPD patients are often tortured with confusion and wonder if they are developing Dementia on top of everything else. Insecurity about their
own sanity, decline in problem solving and calculating skills only adds to the problem of depression. The day the task of handling one's own finances and writing out checks is turned over to someone else is a very bleak day indeed. Lack of control over one's life and losing all sense of independence and productivity is debilitating, defeating and very depressing.

A typical day for the COPD patient revolves around their nebulizer treatments, time consuming methods of inhaling medication through a pipe type contraption. On an ordinary day this is done twice a day, and if the patient is having a "bad" day the albuterol may be needed several times.  These treatments don't repair or heal any of the lung damage, they are to make life more comfortable. Familiar types are Perforomist, used to help with bronchospasms, Budesonide, a steroid that reduces inflammation, Albuterol,  a bronchodilator that relaxes muscles in the airways and increases air flow to the lungs. Spiriva is a hand held inhaler, also a bronchodilator that relaxes muscles in the airways and increases air flow to the lungs. Any of these medications have their own potential side effects. Patients need to deal with lack of appetite, increased anxiety, metallic taste in the mouth, dry mouth, coughing, fungal infections related to the use of the steroid, increased heart rate, tightness in the chest, and increased confusion.So difficult it is to get to the bottom of complaints when any of them could be medication related.

One of the worst days in a COPD patient's life is the day they were told treatments are no longer enough and they need to be on supplemental oxygen 24 hours a day, 7 days a week. The arrival and instructions for the Visionaire Concentrator, which is the stationary tank providing continuous oxygen, is a surreal experience to say the least. Tubing runs from the tank to the nose piece of the patient, tethering them forever like a ball and chain. If the person wants to wander beyond the length of the tubing hose, he/she has to drag the machine along with them.

To leave the house, there are various types of portable oxygen tanks. We have the M6 size tank which is carried like a backpack and depending on the level of oxygen needed, can last from 4 - 8 hours. What that means is that the patient always needs to be prepared when going anywhere by taking along spare tanks.

Financially, the cost of such a chronic condition can wipe out a person's life savings or eat up a good portion of their monthly income. A trip to the pharmacy usually sets off another period of a sour day when once again the patient is reminded how much the smoking habit has cost them. The idea of paying to simply breathe the air we all take for granted is mind-boggling.

People living with such a condition often say they no longer fear death itself, but rather how death will come. Admission to the hospital can become a recurring event, and with each visit they are at risk for pneumonia, infection just from being there, blood clots from lack of movement, and upon discharge, weaker than when they went in.

New Year's resolutions are often said with humor. There is nothing remotely funny about flimsy, good intentions when it comes to cigarettes. Often smokers claim to actually enjoy their cigarettes. Yes, cigarettes can relieve tension, can reduce appetite, can be a comfort when lonely or grieving, can be like a best friend; but a true friend doesn't turn the tide and be your downfall. 


April 2014

If you or someone you love would like to help raise awareness about COPD, Healthline has offered a wonderful opportunity:

Healthline just launched a campaign for called "You Are Not Your COPD" where COPD patients share their story or advice about living with the disease.  You can see the homepage for the campaign here:  

They have partnered with the COPD Foundation to promote the campaign and have pledged that for every submitted story, Healthline will donate $10 to the COPD Foundation.
The more stories they receive the more Healthline will donate to COPD research, support, and treatment programs.