1 Knowing How My Lungs Work Will Allow Me to Breathe EasierBarbara Rife, BS, RCP

2 What does LAM do to my lungs?As LAM cells invade the lungs, they impact the alveoli (which is the lung tissue – the air sacs which take in air and transport oxygen to the blood). This causes airflow obstruction and air trapping. Airflow obstruction – hinders the ability to move air out of the lungs (measured by FEV1), and causes air trapping so stale air remains in the lungs (measured by Residual Volume) Alveoli (air sac) damage – hinders the ability to get oxygen out of the air into the blood (measured by DLCO) A Pulse Oximeter (www.oxyview.com, tells you how much oxygen is getting into your blood. If it shows an oxygen level below 90%, your body is not getting enough oxygen. Explain how a pulse oximeter works and why you want one (to help you become more in tune with your body). But don’t become a pulse ox addict! Alveoli are destroyed and replaced by smooth muscle cells, which take up space and affect your ability to get oxygen into your body Damage to airways and lung tissue with smooth muscle cells invading the lungs. When you breathe in, you don’t have the surface area in your lungs to transport the O2 adequately to your blood. When you try to breathe out, you have airways that are collapsing, air sacs are not functioning properly, so you hold onto some air (residual volume). So you don’t have as much room on next breath to bring oxygen in. Pursed lip breathing hold airways open longer so you can get more air out. By doing pursed lip breathing, it forces you to exhale more slowly and longer, which gets more carbon dioxide out. Diaphragmatic breathing – lungs can become hyper-inflated, they push down on your diaphragm so it does not have easy movement. Explain glass filling up. Glass full of muddy water, how do you get clear water into it? Have to dump the old stuff out. Then you can bring in the good stuff. When you are exerting yourself, people tend to hold their breath. Very common. Don’t do it! Lungs to the body are like the gas tank to your car. If you are not filling your car up with gas, how far can you go? If you don’t replenish your body with fuel, how far are you going to go? Pursed lip and diaphragmatic breathing allow you to replenish your fuel.

3 Oxygen – your body’s lifelineMaslow's hierarchy of needs Oxygen – your body’s lifeline Your body needs oxygen! If you can’t breathe, nothing else matters! Keep an eye on the oxygen level in your blood by using a pulse oximeter. If your body is not getting enough oxygen (pulse oximeter shows oxygen level below 90%) then you are damaging your body. Every cell in your body requires oxygen to function. When your body is not getting enough oxygen, your muscles (including heart) have to work harder. If your body has been starved of oxygen, over time the damage is cumulative. Similar to starving yourself of nutrition, eventually your body will shut down. If your stats are dropping below 90%, then you need supplemental oxygen. You CANNOT “wean” yourself off supplemental oxygen. That is like “weaning” yourself off water. You will not get “addicted” to oxygen. That is like being “addicted” to water. If you need supplemental oxygen, use it! Every cell needs O2 to perform properly. Use supplemental O2 when you need it! If you are recovering from a respiratory infection, you may need supplemental oxygen for a while, and then as your body recovers you may find that your stats remain above 90% without supplemental oxygen. One gal said smile at people when they look at the nose hose. Look people in the eye and smile. (Barb’s story about the man with the burned face. Can’t leave his face home. Look him in the eye and smile.) You can’t leave your lungs at home.

4 What’s causing you to feel short of breath? What can you do about it?Are you exerting yourself? How are you breathing? Are you breathing? Is your body frustrated? Healthy lungs are able to step up to meet the needs when you exert yourself, up to a point. Damaged lungs don’t have that capability. They can’t keep up with the need. Your body can trigger a feeling of shortness of breath when you are not moving air well, even though your pulse ox shows 90% or higher. What can you do? STOP! Lean against something or sit down Do pursed lip and diaphragmatic breathing Get yourself into a pulmonary rehab program. Muscles that are conditioned require less oxygen. You can live with only 1 lung. With normal lungs, we don’t use our full lung capacity. With lung damage caused by LAM, we don’t have that extra capacity to rely on. We max out our lungs when we exert. And there are no reserves to draw on. Share experience in ER – nothing more terrifying than not being able to breathe. If you can’t breathe, nothing else matters Explain why pursed lip breathing keeps the airways from collapsing Show how to do pursed lip and diaphragmatic breathing Barb’s take on it – think of your lungs like a sponge. The sponge gets soaked (air trapping) so you can’t get more air in. Use your diaphragm to squeeze out the sponge, and use pursed lip breathing to get the air out. This process also helps reduce panic. Instead of panicking and waiting to get your breath back, you are taking action to get your breath back.

5 Oxygen delivery optionsOxy-View oxygen delivery glasses Transtracheal oxygen delivery