Please forgive my failure to write a post in almost three weeks; I’ve been going through a lot emotionally. The post topic for today is the use of oxygen.
About thirteen years ago—I was twenty-seven at the time—I was awaking each morning having a pain crisis. They were mild crises and would dissipate after about thirty minutes to an hour. My doctor ordered a sleep study. It took a number of sleep studies to isolate the issue and find the right fix. I had sleep apnea.
Sleep apnea is a disorder that causes a person to stop breathing one or more times while sleeping. Pauses in breathing can last a few seconds or a few minutes and can happen dozens of times in an hour. The patient will sometimes start breathing again with a loud snort or choking sound. People who are overweight or have large tonsils are often more likely to suffer from this condition. Due to the constant interruption to their sleep patterns, sleep apnea sufferers will feel very tired during the day.
When I was diagnosed with sleep apnea, I was first given a CPAP (continuous positive airway pressure) device. A small mask covers the nose and mouth (affectionately called by my brother, “the Darth Vader mask”). A tube runs from the mask to a small machine. When worn properly, the CPAP machine uses mild pressure to keep the patient’s airway open; this prevents those pauses in breathing.
My brother uses a CPAP device and loves how it has improved his sleeping. For me, however, it did nothing to prevent the pain crises I was having each morning. After another sleep study, it was discovered that my oxygen level dropped to 70% while sleeping. Instead of a CPAP device, I began sleeping with oxygen at night. That corrected the problem.
For the past twelve or thirteen years, I have used an oxygen concentrator while I sleep. When you are in the hospital and wear an O2 mask or nasal cannula, you receive 100% pure oxygen. Using the air in the room, a concentrator removes the nitrogen and delivers 87%-95% oxygen to the user. When last tested, my machine was 98% comparable to 100% pure oxygen; so that’s really good.
Since I began sleeping with oxygen, I seldom wake up in crisis; though it does occasionally still happen. Thankfully, during waking hours, my O2 levels are normal and I don’t need to use oxygen. When I’m having a
monsoon level pain crisis, I use oxygen during the day time. I have used it 24hrs a day for two or three days straight when I’m having a bad crisis. When having a severe crisis, I can instantly feel a difference when I put on the oxygen.
I personally feel every Sickle Cell patent needs to have oxygen available to them at home. Using oxygen when I sleep and having it available when in crisis has made a big difference in my life.
¶ Preparing to write this post, I typed “sleep apnea and sickle cell disease” into my search engine. I found numerous informative articles.
Emerging data shows that Sickle Cell patients who suffer from sleep apnea are at higher risk for strokes and pain crises. Another
article spoke of a 12-year-old patient who suffered from sleep apnea. However, when her tonsils were removed, she showed a dramatic decrease in the number of hospitalizations and pain crises. Having just learned this, I can’t help but wonder how I, as a child and teen, may have benefited from having my tonsils removed.
I think it worthwhile for parents and patients to research this subject and discuss it with their doctors.
