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Contributed by Jim Nelson, consultant to CAIRE Inc. ~

A nasty-sounding word. Sounds like two or more things ganging up to kill you! I have done a lot of writing and lecturing on Chronic Obstructive Pulmonary Disease and related lung disorders, and that community has a similar term that I truly hate … “End Stage.”  There are four legitimate stages to COPD, and some numbskull, many years ago, tagged the fourth stage as end stage. Your average COPD patient, upon being informed that he or she is in end stage, or stage 4, will be tempted to just give up. After all, end-stage cancer or renal disease or whatever means impending death, right? Well, in most cases, yes. However, I know COPD patients that have been in end stage for years. They take care of themselves, they eat properly, take their meds and they exercise! In many cases, they are still doing the same things that they have always done, just more slowly. If they have been prescribed supplemental oxygen, they wear it!  They wear it not only around the house, but also out in the world. They have learned to live their lives.

Once we have attained a certain age, we are likely to have also attained multiple disorders. It is not at all unusual for us to list arthritis or peripheral neuropathy or a vague ache in our lower back. All of this in addition to our main complaint, whatever that may be. Just sitting here, I can think of 12 comorbidities that I deal with on a daily basis. They each carry their own limitations, their own pills or capsules, their own interactions with their fellow diseases. Including my antirejection drugs from my lung transplant, I take about 20 pills morning and night. My end of the counter in our bedroom looks like some cut-rate pharmacy.

Thing is, we are faced with the necessity of learning about each of our disorders. Symptoms, meds, progression, and on and on … the more that we know, the better we can manage each of the things that affect us. A couple of years ago, Mary and I were at a dinner party at the house of friends. There were four couples, all of an age to collect Social Security and predictably, the conversation soon wandered into the field of medicine, specifically the ailments of those present. I asked one of the other guys what he was taking for his restless leg syndrome, and he replied immediately with the brand name of the drug. Our host immediately dove for the bookcase on the other side of the room and came up with a book that had to weigh 15 pounds. It was a prescription drug reference guide, and he dug through it until he found our drug. We decided that we should invent a board game based on the book. The leader would open the book at random and read the name of a drug. Anyone who had heard of it would be awarded a point. If a contestant knew the uses of the drug, that would be worth two points, and if they were actually taking it, five points!!

So, point is that if you have more than one thing wrong with you, it gives you one more thing to keep track of. You owe it to yourself to make the effort to study to learn, to help your medical team by having a decent knowledge of your particular combination of diseases.

~ Uncle Jim

Jim Nelson is a double lung transplant recipient and a patient advocate for COPD patients throughout the U.S. and around the world. He and his wife, Mary, are well known patient advocates and brand ambassadors for those organizations who tirelessly endeavor to help those individuals who suffer from a variety of respiratory diseases and the caregivers who support them. 

If you have been prescribed oxygen therapy, learn more about CAIRE by visiting www.caireinc.com/patients or calling 1-877-704-0878 to talk to an oxygen advisor. When using any oxygen therapy device please consult the applicable product instructions for use for product indications, contraindications, warnings, precautions, and detailed safety information.

 

 

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