ALS From Both Sides, ALS Patient Care
ALS From Both Sides
Care of an ALS Patient
By Diane Huberty, Retired RN, Certified Neuro Nurse
...and ALS Patient

Oxygen Use with ALS

At some point in ALS progression the question of using oxygen to ease breathing difficulty will come up. Getting enough oxygen is not a the problem in ALS. There is nothing wrong with the lungs. The problem is muscle weakness that prevents inhaling deeply enough to get enough air in. If a machine such as a Bi-level Ventilator or an invasive ventilator is used to push enough air in, the lungs can absorb oxygen from room air without difficulty. Therefore the treatment for breathing problems in ALS is mechanical support, not oxygen. For people with ALS who also have lung problems that directly affect the ability of the lungs to absorb oxygven (such as pneumonia, COPD, emphysema or asthma) in addition to ALS, oxygen may be necessary.

Often the response to the use of oxygen is that it is dangerous for ALS patients. That is both true and false!

Respiratory drive runs on CO2 levels. Oxygen levels contribute very little to the process of stimulating breathing. CO2 is produced by working cells and sent through the blood to the lungs to be removed during the process of breathing. The CO2 is exchanged for oxygen and the CO2 is exhaled. When that exchange is impaired, CO2 levels rise and the respiratory regulatory center in the brainstem coordinates an increase in breathing rate and depth to blow it off. An ALS patient with weak respiratory muscles can't breathe deeper so the CO2 levels are harder to bring down.

The risk of giving oxygen to an ALS patient who has high CO2 levels is not recognized by some doctors and respiratory therapists. If you develop breathing problems and call for an ambulance or go to the Emergency Room, protect yourself by wearing a Medic Alert bracelet. They are available online from several companies. This site offers a range of styles.

medical-id-bracelets

The suggested wording is shown.

Medic Alert bracelet Medic Alert bracelet>

Over time body chemistry allows the respiratory system compensate and to work with these levels as the "new normal". When the compensatory measures are maxed out by increased weakness of the respiratory muscles or lung congestion or pneumonia, that small amount of respiratory drive from oxygen becomes very helpful. But if oxygen is given and the O2 Saturation increases to about 90%, that part of the respiratory drive stops because the O2 level is near normal. Loss of that small part of respiratory drive is enough to tip the drive from "barely enough" to "not enough". The rate of failure begins to increase and the patient may stop breathing entirely. The risk of adding O2 is therefore very real—but only if the patient is retaining CO2 enough to rely on compensatory body chemistry.

So when does this risk begin with ALS? CO2 retention begins when breathing is first affected but usually only reaches problematic levels when breathing becomes noticeably shallow. Most people first notice this when lying down and it gets progressively worse, especially at night, because it is normal to breathe more shallowly when sleeping. Restless sleep and frequent awakening result in daytime drowsiness and lethargy. Waking with a headache that goes away with some deep breathing or just getting up and active is the first definite sign that CO2 is building up at night. It is time for a machine that can deliver BiPAP through a mask to increase the depth of your breathing which will naturally blow off CO2. With BiPAP at correct settings -- inspiratory pressure significantly higher than expiratory pressure, i.e. 8 & 4 or 12 & 6 -- using oxygen is safe although unecessary unless you have some lung disease or pneumonia or are reaching the terminal stage of ALS. The high-risk time for using O2 is therefore in between the early signs of respiratory problems and beginning BiPAP. If you delay getting BiPAP or choose not to get it all, a simple cold, respiratory flu, or beginning of pneumonia can quickly have you struggling to breathe. A trip to the ER is where it gets dangerous. Too many EMS crews and ER doctors do not know the danger of O2 when CO2 is high and ALS patients have died as a result.

You won't quit breathing the minute someone puts oxygen on you but BiPAP has to be promptly available. It is a basic rule in medicine that you don't automatically give more than 2 liters per minute of oxygen to anyone. This amount is considered low enough to be safe for anyone, but a check of an ALS patients CO2 levels should be done regardless. O2 Saturation (monitored with a simple fingertip monitor) does not reflect CO2 levels and O2 levels remain normal until CO2 levels are very high. The person's CO2 levels have to be checked to see if he is retaining CO2. This can be done using a device that tests exhaled air (Capnometer), or with a check of blood drawn from a vein, the same as for most blood work. The results of these methods correlate well (within 95% in most breathing problems) with the "gold standard" of respiratory tests, ABG's (Arterial Blood Gasses). ABG's require drawing blood from an artery. ABG's are often preferred by doctors because they show not only the CO2 level, but also if the body is already using compensatory chemistry.

An emergency alert bracelet is important if there is any chance that a knowledgeable and assertive caregiver won't be in the ER with you (not in the waiting room or snagged by a clerk to fill out paperwork).

The issue of using oxygen frequently comes up when the insertion of a feeding tube is planned. My suggestion is that anyone who is planning a PEG insertion have their CO2 levels checked a few days before to determine the degree of risk from oxygen and a consult between the Pulmonologist and GI doctor inserting the tube concerning the need for NIV and use of oxygen versus changes to the NIV settings if sedation and pain meds slow respirations.


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