Back to the very beginning...

When I was about eight year old, I suddenly developed difficulty breathing. It happened mostly in humid weather and when the temperature reached 85F/30C degrees or higher. Upon a visit to the pediatrician, I was diagnosed with exercise-induced asthma. I never did any lung function tests; instead, the doctor gave me an inhaler stating it would take away my symptoms. I used the inhaler diligently; however, the shortness of breath, chest pain and the sensation that I was trying to breathe through a plastic bag never went away. Over time, I learned to live with the symptoms.

When I became severely sick in early 2009, my chief complaint was shortness of breath. The very first test that was prescribed was pulmonary function testing. When trying to complete the testing, I passed out a few times from sheer exhaustion. I struggled greatly to breathe in against the machine. I do not recall all the specific results; however, I do remember the testing showed I had restrictive lung disease. The pulmonologist upon reviewing the results was baffled. Restrictive lung disease was usually caused by scarring of the lungs--conditions such as tuberculosis, asbestos exposure, pneumonia and various other lung-scarring disorders. These disorders show up as abnormalities on an x-ray of the lungs. Since my lung x-rays were normal, the doctor decided the abnormal test results were from lack of effort. Furthermore, it was declared all my symptoms were caused by illicit drug use. Crushed by this erroneous "diagnosis", I sought other medical treatment at other medical facilities and buried these test results.

A few months later, a doctor discovered my heart rate sky-rocketed upon standing up. After further testing, I was diagnosed with postural orthostatic tachycardia syndrome (POTS). The main gist of this syndrome is your heart rate goes really fast when you are upright. When you lie down, the heart rate will go back to a normal rate. One thing that always bothered me was my breathing. The doctors always told me my breathing was fast because my heart rate was fast. I never believed this to be true because after my heart rate would become normal after lying down, my breathing remained fast for several hours afterwards. Additionally, the more tired I was, the worse my breathing was. Despite my concerns, no one ever referred me to a pulmonologist or ordered lung function testing.

This November, when I was having significant breathing problems, a doctor finally ordered lung function testing. It was almost comical doing the testing because the exact same things happened like my previous lung function testing. I passed out and had a terrible time trying to inhale against the machine. (This time, the machine was unable to get a reading for my inhalation because my respiratory muscles were so weak.) The results showed my forced vital capacity was 20% of normal. The doctor interpreting the results did not think much of the results. I was prescribed inhalers and told I would be breathing better very soon. The inhalers did not work.

In my search for answers, I discovered neuromuscular disease can cause respiratory muscle weakness. (Mitochondrial Disease is a type of neuromuscular disease.) This manifests itself as a restrictive type of lung disorder. I also read, as soon as forced vital capacity for a person with a neuromuscular disease drops to 50% of normal, they are to be immediately started in non-invasive ventilation. Wow! I should have been using non-invasive ventilation for some time considering my forced vital capacity was at 20%. Thankfully, I never had to explain this all to a doctor. Instead, I became very sick with acute respiratory distress in December, and a doctor very knowledgeable about the lungs recognized I had respiratory muscle weakness and prescribed non-invasive ventilation.

Now, as I reflect back on all this, I wonder how long have I needed non-invasive ventilation? How long has my respiratory muscle weakness been causing my shortness of breath? On the upside, I am grateful to have found the cause to my shortness of breath and am grateful to be getting treatment for it. It seems this has just been another test in patience."Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope" (Romans 5:1-4).