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March 31, 2017




I recently wrote an article titled “REQUIRED READING FOR CAREGIVERS, FAMILY, AND FRIENDS OF LUNG DISEASE PATIENTS”.  It dealt with the terrible misunderstandings, the lack of knowledge among caregivers, family, and friends of what the lung disease patient is going through. 

The main thrust of the article was that lung disease is normally an insidious thing, a disorder that comes upon the patient so very gradually that no one notices any difference on a day-to-day or even month-to-month basis.  That includes the patient themselves and all of those close to them.   The patient goes through life, doing all of the stuff that is involved in maintaining relationships.  Shopping, dining out, playing weekend warrior on the golf course or tennis court, all of the activities of the normal human person.

Gradually, as the disease progresses, as the lungs of the patient grow less capable of processing oxygen or expelling carbon dioxide, the activities become a bit harder.  Shortness of breath, the persistent cough necessary to rid the breathing passages of the thickening mucus, a bit more fatigue after the more strenuous of the activities slows the patient down a bit more than is comfortable.  The limitations are initially blamed on growing older, on current or former smoking, on being overweight or out of shape.

Then, the first exacerbation strikes!  A lung infection or pneumonia lays the patient low for a short period of time, and the friends and family sympathize and patiently wait for the eventual recovery so that everyone can go run and play like before.  They fully expect the patient to recover, and at first, they are right.  However, as time progresses, the shortness of breath and the cough get worse, the exacerbations get more frequent, and the patient finally is driven to the doctor to receive the dreaded diagnosis.

By the time this happens, the patient will usually be struggling to keep up with the rest of the gang.  Thing is, even if the diagnosis is shared, the majority of the friends and family will not understand.  How could they?  Unless they have seen someone close to them fighting lung disease, they will normally expect the patient to recover like they always have.  Therein lie the misunderstandings.  They may take the newfound reluctance of the patient to engage in the former activities as puzzling, even insulting.  They may view the patient as weak, as unfriendly, as a disappointment because they are just not trying.

We discussed all of that in the previous article.  It takes a great deal of caring, of education, to get everyone else to the point where they understand the struggles of the patient.

So, what are you, as the patient, doing to help the situation?  Are you reluctant to reveal your diagnosis to others because of shame, embarrassment, or in an effort to shield them from the burden of worrying about you?  Are you struggling to keep up with the group, risking harm to your heart and brain cells by allowing your oxygen saturation to drop?  Do you refuse to wear your oxygen cannula where others can see you?  Are you actually hiding from the world, rather than risking the anticipated stares of strangers, the expected pity of family and friends?  Are you destroying your own quality of life in an effort to protect the others from worry?

In plain terms, are you taking the easy way out? 

If any of the above statements apply to you, then you are part of the problem!  How in the world can we expect others to have any idea what we are experiencing if we don’t tell them, if we don’t show them?  It is hard.  I know that.  I have been through the entire process, from hiding the diagnosis to never wanting to be seen wearing the cannula, to acting as if everything was just dandy.  I have made the excuses, I have gradually chosen activities that required less effort, even if it meant refusing invitations to engage in things that I used to enjoy.

I was so incredibly wrong!

Once I realized that my secrecy, my reluctance to show any weakness, was accomplishing nothing, once I reached the point of wanting to help spread awareness of lung disease, once I worked up the nerve to be truthful with those who loved me, everything changed!

Mary and Wendy, our daughter, of course knew exactly what was going on.  I did have the sense to share my gradual loss of lung function with them, and they understood and did whatever they could to help.  When I began to share my situation with the rest of the family and with our friends and clients, there was a general feeling of relaxation in our relationships.  Those who really cared for us actually asked for more information so that they could understand.  Those who were accustomed to my former level of activity came to realize why I was forced to decline invitations to join them.  The outpouring of love and caring was almost overwhelming, once I started being honest with people.

Mary and I, and now those close to us came to realize that there were times when plans had to be changed due to an exacerbation, a flare-up of symptoms, or just a bad day.  There was now an understanding why there were times when visits had to be cut short, when I simply had to take time to recover.

Wearing the cannula in public became a matter of pride, of proof that I had the good sense to take care of myself.  It started conversations, valuable conversations with strangers who were experiencing symptoms of breathing problems.  I remember a long conversation with a 14 year-old boy in the Seattle airport, a teaching opportunity.  It felt good to share, to spread awareness about a misunderstood disease.

So, please give your caregivers, your family, your friends a break!  Let them know what is happening with you, inform them why you have limited your activities, why you are wearing the cannula.  Otherwise, the misunderstandings will just continue.  Life is good.  Life is better if you make the effort to communicate with those who care for you, if you make the effort to exercise and take your meds and use your oxygen and try to stay active.  It is all about quality of life!

It is up to you.

Love all y’all!

Uncle Jim

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