Another Excerpt From “ALS: A Respiratory Perspective”

Here is another excerpt from my upcoming essay that I want to share with y’all. It’s an example of the kind of information included in the essay. Remember, the passage is not edited and it needs citations in a couple of places.

Disclaimer: I am not a medical doctor nor am I a respiratory therapist. If you have any questions or are experiencing any symptoms mentioned below, contact your doctor or RT immediately.

“In most cases of ALS, respiratory failure is the culprit responsible for patient deaths. Wait a minute, earlier in this book wasn’t there a statement made about ALS attacking only the voluntary muscles in the body? This is correct.

We breathe all our lives without thinking about it. The act of breathing gets embedded into our subconscious where it is interpreted as an automatic process. But, we can stop breathing when we want to; then do an about-face and start breathing again when we choose to do so. Therefore, the breathing process (and the muscles that control it) is voluntary.

The diaphragm is the muscle which enables us to expand and contract the lungs. As ALS weakens the diaphragm, the patient’s ability to breathe is compromised. The first thing I noticed was that I couldn’t inhale as deeply as I once could which also meant I wasn’t able to hold those long notes when singing in the shower.

How was this possible? I just started using the wheelchair a couple of months ago. The notorious death rattle of the disease had come knocking on my doorstep: once my breathing is affected, I knew this was the beginning of the end. I was terrified.

A damaged diaphragm Introduces a much deadlier issue, a silent killer that will sneak up on you if you’re not careful. With a crippled diaphragm, the lungs cannot fully contract, and, thus, they won’t expel carbon dioxide adequately. The defective blood-gas exchange process will cause carbon dioxide to slowly build up in the bloodstream and, if not properly treated, will result in carbon dioxide poisoning followed by respiratory arrest.

The common symptoms of slow carbon dioxide toxicity are dull headaches accompanied by drowsiness. These warning signs are subtle and can easily be mistaken for other ailments like allergies, a cold, simple dehydration, or the flu.

The respiratory therapist will use a pulse oximeter to measure the oxygen saturation of the blood when you visit your local ALS clinic or pulmonologist. A normal reading of 95-100% (cite) means your lungs are supplying the proper amount of oxygen to your body. However, the pulse-ox reading does not tell the whole story.  For example, you may have a reading of 99%, but the carbon dioxide in your blood might be approaching lethal levels.

An arterial blood gas test (ABG) will test the blood from your artery to give you not only a more accurate pulse-ox measurement but a clear indication of what the carbon dioxide levels are as well. If you are encountering regular dull headaches especially if they are accompanied by fatigue, contact your respiratory therapist (RT) or pulmonologist immediately. Urge them to perform an ABG test. If this is beyond the capabilities of your ALS clinic, make an appointment with a pulmonologist.

Some confusion exists over what proper ventilation is for the ALS patient. In the case of victims with a non-functioning diaphragm putting oxygen on them would be a fatal error. With those who have sustained damage to their diaphragms, oxygen might appease them psychologically, but physically, the blood-gas exchange mechanism is still broken. Again, a normal pulse-ox reading will give a false sense of security. Then, to properly ventilate a patient with ALS, the diaphragm must expand and contract wholly for proper blood-gas exchange to take place.”

Copyright © 2017 Kipling A. Jackson




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