Oxygen...for most people living their daily lives, the oxygen they breathe rarely crosses their minds. Healthy people just breathe, it's something they have done since that first breath when they entered the world. This all changes once someone has a lung disease.
Pulmonary Fibrosis (PF) is a restrictive lung disease. Restrictive lung diseases are "... respiratory diseases that restrict lung expansion, resulting in a decreased lung volume, an increased work of breathing, and inadequate ventilation and/or oxygenation." Please note that restrictive lung diseases are much different than obstructive lung diseases like COPD and Emphysema. Everything I comment on with this blog has to do with PF, a restrictive lung disease and does not apply to COPD, Emphysema or other obstructive diseases. Please see my Standard Disclaimer.
If you have PF, it is very likely that at some point in the progression of your disease, you will require supplemental oxygen. Supplemental oxygen is considered a drug and requires a prescription for an insurance company to pay for oxygen supplies. Here in the United States, a supplemental oxygen prescription for a PF patient usually has three components. oxygen required at rest, under exertions and while sleeping. Again, here in the United States, supplemental oxygen is prescribed when a patients blood oxygen saturation routinely drops below 88% while at rest, or exercising or during sleep. The 88% benchmark is based on some old studies with COPD patients, and is too low for PF patients. I feel that 90% is the minimum that a PF patient should be allowing their oxygen saturation to drop, I'll explain why later.
So why do we end up needing supplemental oxygen? This is how I describe the progression of IPF in the lungs. At one point in the past our lungs were damaged. We don't know what caused that damage. It could have been dust, smoke, fumes, or one of hundreds of potential factors. With IPF, the initial cause really doesn't matter, what matters is the fact that when your body repaired that initial damage, the repair switch stayed on and your lungs continue to scar. As the scarring increases, the lungs shrink. The amount of air you can get into your lungs decreases. Along with lungs that are getting smaller, they are getting thicker. The fibrosis restricts the amount of oxygen that can be transferred from the lungs into the blood stream. So you can get less air into your lungs, and the air that you do get into your lungs isn't used very efficiently. Just like a fire needs oxygen to burn, our body needs oxygen for energy. Supplemental oxygen increases the concentration of oxygen in each breath, and the higher the concentration of oxygen, the more will end up in your blood. The more scarring you have, the more supplemental oxygen you will need.
Those of you who know me know that I am a data hound and that I love my numbers. I knew I needed to be on supplemental oxygen well before I had a prescription. To 'help' my medical team make the decision to prescribe supplemental O2, I started data logging my blood oxygen saturation (sats). Here is a chart of what happened in the morning when I walked from the car and slowly up a flight of stairs to my desk.
My sats would be around 95%, drop to 86/87% when I climbed the stairs then recover. The ladies in the office learned to wait a few minutes after I got to my desk before expecting much out of me. I was a little fuzzy.
The medical team uses what is called a Six Minute Walk Test (6MWT) to determine oxygen requirements during exertion. Basically you walk with full effort for six minutes. They monitor sats and heart rate during your walk and if your sats drop below 88% they turn on the O2 to see if they recover. Here are the results of my official 6MWT.
I dropped down to 81% while walking so was prescribed O2. It was not long before I needed O2 during sleep and at rest. My fibrosis began a pretty active stage by then. A year later I was up to 10 lpm of oxygen for exertion, more if (when) I pushed myself.
The meter I used to data log my sats was the Masimo iSpO2 Pulse Oximeter. This meter is at the high end of available pulse ox's, but it is the very best for data logging.
Earlier I mentioned that we (PF patients) need to keep our sats higher than 90%. This is very important as when your blood O2 drops below 90%, you are starting to cause damage to your other organs. Your brain is a major consumer of oxygen, as sats drop, your brain tells your heart to speed up and your lungs start trying to direct blood to areas in your lungs with the highest oxygen concentration. Dr. Lederer explains this process, and the hazards of having routinely low blood oxygen sats here. As Dr. Lederer explains, pulmonary hypertension is one potential result of routine low sats. We already have PF, pulmonary hypertension really makes things much more difficult for us. This excess work can also cause enlargement of the right side of your heart.
Bottom line - If you have IPF, or really any PF, keep your sats higher than 90% at all times. Titrate your O2 to maintain blood oxygen. You will feel better, you may live longer, and your quality of life will be enhanced. Oxygen will help you stay active, staying active is good for the mind and the body and will really help if you decide to pursue a lung transplant. A common mantra in the PF community is "Keep Moving". That is so very true. The more you move, the more you will be able to move. Supplemental oxygen gave me a new lease on life and kept me healthy and strong enough to receive my lung transplant.
While we are on the subject of oxygen. Many, many people in the medical community really have no idea about pulmonary fibrosis and the needs of a PF patient. They are much more used to the obstructive diseases such as COPD. There was a time when I was in the hospital (not UTSW) pre-transplant for something or other and the nurses kept trying to turn my O2 down. When I asked why they kept turning it down a common response was "We don't want you to get addicted to oxygen". Seriously? I had to explain to them how my lung disease worked, a teachable moment. In a discussion on one of the PF support forums, I admitted that..
My name is John and I'm an Oxygen Addict!
I took my first hit of oxygen the morning of November 9th, 1961. My parents had just celebrated their 9 month wedding anniversery a few days earlier. I do blame my addiction on my parents, if my Mom had not exposed me to oxygen that fateful November morn, I never would have taken that first hit.
My lungs are doing their best to cure me of this addiction. They are getting smaller so I can't take as large a hit as I used to. They are also putting up scar tissue to shield my blood from what oxygen does make it into my lungs. Being an addict, I work around my lungs efforts. I purchase higher grades of pure oxygen and have the "good" stuff with me at all times.
One of these days I might just have to trade in these lungs, can't have them interfering with my addiction now can I?As you know, I finally did trade in those old lungs for new and using supplemental oxygen is now a thing of the past. Hopefully my experience can help someone early on that journey.
A couple good links:
Dr. Lederer posted "The Sixth Sense: Why you should use oxygen if you have Pulmonary Fibrosis!"
Dr. Swigris posted "Pulse Oximeter – What Do I Do?
If you are not yet on supplemental oxygen, but it may be in your future, you might want to consider being a part of this important study.
Hopefully I've done a good job of highlighting the importance of using supplemental oxygen if you have PF. If you have any questions or concerns, please ask.