As part of the pulmonary rehab program that I take part in, each week we have a “seminar” which covers areas of maintenance, support, care, nutrition, and expectations from lung disease. These are informative small group sessions, which allows for more personal honesty and communication.
Yesterday’s session covered some of the expectations that can be elusive to many lung disease patients. A good bit of the time was devoted to the two types of pulmonary disease: restrictive and obstructive. (Note that we did talk about lung cancer, as well. However, even though lung cancer can spread to the airways, it is not generally seen as obstructive, as far as I know. Our talk dealt much more with diseases specific to the lung and pulmonary functions.)
Obstructive lung diseases are probably the most well known, because they are the subject of countless ads and features. These include:
• COPD – which is actually an umbrella term which includes emphysema and chronic bronchitis. (Many of these disease types are caused by smoking).
• Cystic Fibrosis
Obstructive lung diseases cause obstructions to exhaling air from the lungs, causing a large amount of air to be left in the lungs. Since the old saying of “out with the bad air, in with the good” comes into play here, the inability to properly dispel air also means the inability to properly expel carbon dioxide and other toxins.
Restrictive lung diseases are caused by irreversible damage to the lungs, which cause the available lung muscle that is useful to be reduced. This causes problems in both inhaling and exhaling. This is especially acute during exertion and activity. You basically cannot keep up with the need to inhale and exhale at the proper rate.
Restrictive lung diseases include:
• Interstitial Lung Diseases (Mine is NSIP, or non-specific interstitial pulmonitis)
• Neuromuscular Diseases
This second group, except for the last item, gets much less attention and knowledge spread about. This means that support and information for these are harder to find. I’ve searched high and low for a local support group in the Delaware Valley to no avail. I look for these groups not for answers as much as for shared experiences, shared support networks, and for someone who understands.
That is why this blog has morphed a bit. While I will still be posting some fun, silly, serious, and astounding general items, I also will be posting my honest and raw thoughts, hopes, and fear, in the hope that one other person out there in the blogosphere will read and find something that they can share as well.
Now, back to the seminar.
One of the back room concepts that has not really been talked about beyond a few mentions is the possible need for a lung transplant. While I am not there yet, I am assuming that someday, it will probably be knocking on my door.
Many of you may say “That’s great”. If you can get a successful transplant, then you can go on and live a great life again. The funny thing is that the comment is correct. You can then resume as normal of a life as possible, free of the oxygen tanks, even though there will still be restrictions.
It all sounds good, and then you learn that these have a finite life. Survival rates 2-5-10 or more years out, with varying rates of success. At 56, I would be considered on the young side, but when you hear that what will save you may also have an expiration date, it is sobering.
So, it also means that you learn to live your life to the fullest. I spent yesterday figuring out what will happen in 10 years from now, where I would be. I essentially wasted one very valuable day that I won’t get back). More importantly, though, is simply for me to plan for tomorrow, and then the day after that. If I think 10 years ahead, I will miss 10 years of what could still be the best years of my life.
No one has enough time to be able to skip ahead. As the late great singer-songwriter WARREN ZEVON (who died of peritoneal mesothelioma, a form of cancer associated with exposure to asbestos) said: “Enjoy every sandwich”.