I’ve often mentioned “my illness,” mostly in passing, but I’ve never fully explained the condition. It’s rare and many pulmonologists have little experience with it. It’s called Chronic Hypersensitivity Pneumonitis (CHP) and here’s some of what I’ve learned and how I manage it.
My (Mercifully) Brief Timeline
It was in June, 2009 when my breathing difficulties first surfaced. On May 6, 2010, I was rushed to the hospital. I was delirious, had acute pneumonia, weighed 85 pounds, and my feet were swelled until the skin was split and bleeding. The pulmonologists at the hospital found my lungs filled with BOTH staph and strep. The result was 35% of my lung capacity was lost.
Long story short…later that year I was sent to National Jewish Health (NJH) in Denver and I credit them with saving my life. Besides treating me they taught me about my condition and managing it. “Amazing” doesn’t begin to describe the staff there.
So, What is It?
People compare it to what they know, but Hypersensitivity Pneumonitis (HP) is only the same as asthma or COPD as much as table tennis and tennis are the same sport…a ball goes over the net, right?
CHP is an inflammation of the lung, usually the very small airways. In the most serious cases where the allergic reaction is prolonged and untreated it leads to white blood cells building up in the walls of the alveoli and bronchioles. If not corrected, permanent lung damage results and may lead to pulmonary fibrosis.
There are many types of HP. According to National Jewish, “HP typically is found in people who work in places where there are high levels of organic dusts. The most common type of this disease is ‘bird fancier’s lung.’ This is caused by repeated or intense exposure to proteins found in the feathers or droppings of many species of birds.” There’s also “farmer’s lung,” “chemical worker’s lung,” “hot tub lung,” and many other variations.
The NJH site explains that the disease can also be caused by exposure to:
• dust from moldy hay, straw, and grain
• aerosols containing fungi
• bacteria in humidifiers, heating systems and air conditioners
• certain chemicals, such as isocyanates, as well as use of some medications can also lead to HP.
Further, they describe the long-lasting, or chronic, symptoms as including:
• gradual onset of shortness of breath (especially with activity),
• unusual fatigue,
• loss of appetite, and
• unintentional weight loss.
I still exhibit most of those symptoms. I knew nothing about respiratory diseases (I never smoked) back then so my knowledge has soared since. Some of the testing utilized, again according to NJH, include:
• Imaging such as a chest X-ray or high resolution chest CT scan
• Pulmonary function tests
• Cardiopulmonary exercise testing
• Blood tests such as antibody panels
• Sometimes, surgical lung biopsy is necessary for confirmation
My initial test (before NJH) was an x-ray. During and after my hospital stay many of the other tests were conducted, especially in Denver. If you’re having respiratory problems make sure you consult a good pulmonologist so you can receive the proper treatment.
Initial treatment at onset involves identifying and avoiding the exposure that’s causing the illness even if it means changing jobs. Prednisone, a steroid, is a common treatment, but its side effects can also be severe, as I learned. It saved my life, but caused its own damage. If it’s prescribed for you then exercise caution and seek discontinuing it as soon as your doctor deems it safe. I’ve taken antibiotics numerous times over the last five years and have logged about two years on home oxygen.
These days I’m off all meds and try to avoid triggers like stress, anxiety, illness, harmful inhalants, too little sleep, wind, extreme cold, and others. When I relapsed in 2012 I learned just how quickly I can develop bronchitis. A couple of times per day I use a neat little device called an “acappella.” It flutters inhaled air to help expel the accumulated mucus in the lower lobes. I watch my eating since overeating causes pressure on my already diminished lung capacity. Last year I moved to a flat location at a lower altitude that has a dry climate (like with mucus, my lungs have difficulty expelling moisture). Yoga and walking are beneficial.
I also carry a pulse oximeter to measure the oxygen level in my blood. Safe is 89% or higher and most people are in the upper 90s. The best I ever do anymore is 96%, but must be careful because I can plummet quickly like when I assembled my standing desk. Lightheadedness, “seeing stars,” and a tingling sensation alerted me that something was wrong. It sure was.
When I tell people I walk some believe I’m doing better than I am, but because my lungs are less flexible now they’re slow to respond to activity. Thus, short distances are often the most difficult. For instance, if I walk three miles the first mile is a psychological battle as my inelastic and struggling lungs beg me to stop via anxiety. It’s a battle waged during every walk. No exceptions. Still, I know continuing a relatively normal life requires that I do what’s necessary.
So, that’s Chronic Hypersensitivity Pneumonitis. Anyone else out there suffer from a form of the disease? Anyone with other respiratory ailments? It’s always reassuring to swap stories with other sufferers.