Chronic Hypersensitivity Pneumonitis

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 TimelineNJH_PH_3C_PMS
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.

Diagnosing HP
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),
• cough,
• 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
• Bronchoscopy
• 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.


Photo: CA Hawthorne

Pic from about 18 months ago of my acappella. Photo: CA Hawthorne

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.

Photo: CA Hawthorne

What plummeting oxygen saturation looks like. Photo: CA Hawthorne

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.

11 Replies to “Chronic Hypersensitivity Pneumonitis”

  1. Pingback: Chronic Hypersensitivity Pneumonitis | Christina Anne Hawthorne

  2. Hello Christina,

    I just came across your website searching for more people who have HP. I also have HP and was diagnosed in mid 2012. With all the tests and biopsy’s we still do not know what I am allergic to. Do you know what caused yours? It is so frustrating at times, but I always remind myself it could be worse. I just wish I knew what it was, so I could avoid it. Sorry to read about your health issues, but thank you for not making me feel so alone in the struggle.

    • Hi Elly,

      My biopsy was performed in June 2010 and the testing was done out of state (I was living in Wyoming at the time). They never determined the cause via the biopsy, though they noted “crystal-like” debris scattered about in my lower lobes. Whether they’re even related to my disease or not is unknown. That November I went to National Jewish and they speculated—based on my employment history—that the cause was a bacterial infection. In my case, “Sauna Lung.” I was working in a aquatics facility when I became ill. Because the illness was misdiagnosed as COPD for an entire year the bacteria was able to ravage the lower lobes before it was halted. Best-case lung capacity for me now is around 67%, but if I stay healthy that’s enough to allow me to do many activities, albeit more slowly. I’ve been off oxygen since late 2012 (I had a near miss this spring with the early stages of pneumonia, but it was treated in time).

      Though I wouldn’t wish this on anyone else, I’m glad to speak with a fellow sufferer and thank you for your kind words. As you say, it makes a person feel less alone. I’d be interested to hear, if you’re comfortable talking about it, how severe your symptoms are and the extent of your recovery. Are you still on oxygen or meds? Any reactions to meds? How’s your mobility? In Wyoming my treatment was tentative, but in Denver they were aggressive, which probably saved my life. At one point I was on oxygen, antibiotics, Cellcept, Prednisone, NAC (supplement) and others I’ve forgotten now. When this struck I hadn’t called out sick at my job in 16 years. Anyway, if you’d like to share more I’d be glad to listen. 🙂

      • Good Morning,

        Thank you for getting back with me. I am doing fine (the new normal) right now. I started my symptoms back in the winter of 2010 when we did a little remodeling in my home. First thought I had a cold with a cough but it did not go away. Then went through tests thinking it was acid reflux or allergies. Continued to get worse. Was diagnosed in the latter half of 2011with HP. Had a lung biopsy in Fall of 2012 to see if we could figure out the source. No luck. They did see that I had lost 35% of my lungs at that point. They thought it was due to my bird that I had for 9 years. I gave my Perlie to a great Lady (hardest day of my life) and then after my blood circled the globe 4 times, they realized I have no reaction or allergy to the droppings or birds in general. Good news, but to me very bad news. To date have no idea what it is. I have been on Prednisone at different times when I have a flair up. As we all do, I hate it and really never want to go back on it again. It is so hard to hear that not much research is done on this type of disease. I have changed most things in my home, from UV lights in my HVAC to aircleaners, to salt lamps, to Turmeric supplements,etc. I know one thing, I so take the time to smell the roses. It is things like this that make yourself aware of the wonderful things around us, and how blessed I am to be able to take part in life. I send that message to all that will listen. Too many folks complain about things, never really looking at how well they have it.

        • I’m so sorry to hear that you had to give away dear Perlie. I hear so many unfortunate similarities in our stories. In Denver they told me to get rid of my cats. I started crying while the doctor squirmed and I insisted I’d had cats all my life. He countered my sensitivity could have changed. I countered that he’d have to prove it. They couldn’t, even though they tested for sensitivity to dander. Yes, Prednisone is the drug that helped saved my life and that I love to hate. Too late they discovered my high sensitivity to it and I launched into manic episodes. I was rushed to the hospital and then passed on to a psychiatric facility where I languished for more than a week before someone consulted the doctor’s records and realized it was Prednisone causing my problems (I had severe mood swings and could often not communicate). I could go on and on about medical bungling, but you get the idea. These days a low dose of Prednisone is an occasional aid only and I’ve reclaimed enough of my life to be able to enjoy leisurely walking, biking, and hiking. I’ve become a picture-taking fanatic as I chronicle all the wonder in the world. They barely saved me in the ER on my birthday back in May 2010 so each day since is a birthday gift that keeps on giving. I’m so glad that you’re finding ways to appreciate the new normal. It’s a valuable perspective that too few find it within themselves to enjoy.

  3. If your all still reading and responding: I’d love to hear more about HP which is not identified.
    The best I can do is it seems to be seasonal and as best from there I cna figure out is it is some kind of ambient mold. ( hard to get away from ). Anyone else find their HP is seasonal ?

    • If you think you have HP, but don’t know you should be seeing a professional right away. You could instead be suffering from severe allergy issues, asthma, COPD, or countless other issues, some serious, some not as much.

      Regardless, it sounds like you’re describing symptoms and not the disease. I have HP and I’ll always have HP, every day of every year. What I don’t always have is contact with triggers, some of which can be seasonal (as you describe). Mine began with a bacterial infection, but now I’m susceptible to many different triggers, one of which is mold.

      Here’s what’s critical. My HP was misdiagnosed for a year, which led to severe lung damage. If you’re having lung issues you should see a pulmonologist right away. Each day you wait could be making your illness (whatever it is) worse, even if you seem to feel better sometimes. Don’t delay!

  4. Which Dr. do you suggest to see at National Jewish? My friends Dr. has done none of the above tests, just claims it’s my friends bird (that shes had for 14 yrs). She asked for 2nd opinion, he claims he didn’t know anybody (he’s a Pulmonologist at Aurora South).

    She’s on oxygen, prednisone, Mepron, anc inhalers. She is a 20 yr stage 4 Breast Cancer Survivor; has a lot of fight left, but needs the right care.

    • Hi Alison. I’m sorry hear your friend is going through so many trials. My knowledge of National Jewish is based on one visit that lasted several days. After that I only spoke with the nurse for six months on the phone. The care was excellent, but I haven’t had to go back and now reside in Montana.

      The doctor I saw in late 2010 was Evans Fernández, MD, MS; Interstitial Lung Disease Program. He was assigned to me so I don’t know if there would be a better choice. I had no complaints with his care. He saved my life.

      My Pulmonologist in Casper blamed everything from birds (I had no contact at all with birds) to secretly having mold in my apartment. Wrong on both counts.

      One thing I’ve learned is that there are a lot of doctors out there who don’t like to admit when they don’t know or are wrong. Even after Dr. Fernández saved me, my maintenance care back in Wyoming over the three years following was awful. When I had a relapse in 2012 they tried to keep me on oxygen, but I fought back. After relocating to Montana I found an extraordinary pulmonologist who prescribed the correct inhaler. My 50% lung capacity loss remains, but I’m otherwise doing better than since before I became sick in 2009.

      I dearly hope you’re able to find someone who’ll do the proper tests. Guessing that it’s birds, or mold, or cat dander, or any other common cause is wrong. Test! Good luck.

  5. I was diagnosed with HP in 2010 after I developed flu like and pneumonia on Labor Day weekend. I had a bronchoscope in 2011 that didn’t really show much. I was on 40mg prednisone for 13 months from 2010-2012. I have had a year here or there with no significant issues or needing treatment. I am a 50 yr old male now and in great health except for the HP. It comes and goes with each year. This summer I developed a dry cough and it kept getting worse. I have an unknown antigen (bird) has always been the guess. While on 10mg of prednisone I was able to complete a 200 mile bike ride this October. Over-all I feel good but the HP causes me to severely cough, have shortness of breath and causes excess sputum production. I just had a lung biopsy to confirm HP is all that we are dealing with. It was confirmed and now my doctor wants to put me on Cellcept. My issues is that it is not indicated for HP and I cannot find any published data to support its use in chronic hypersensitivity pneumonitis. Any assistance or information would be helpful. I am seeing my physician again to ask more questions.

    • I’m no expert on the drug—in fact, no nothing of what it actually does—but I WAS put on Cellcept in November of 2010 when I visited National Jewish Hospital in Denver, the leading respiratory hospital in the country (I was also on Prednisone, but Prednisone alone hadn’t been doing enough and my decline was steady).

      Knowing nothing, I went on trust at Nat’l Jewish and turned the corner at that point, improving considerably. Unfortunately, my care when I returned to Wyoming was awful in retrospect. It led to my relapse in 2012 and caused me to not progress as I could have until I began seeing my present pulmonologists in Montana in January 2017.

      My doctor at National Jewish was Evans Fernandez, but I have no idea if he’s still there. The care I’ve received here has been phenomenal and I’m doing better than I have since before I became sick in 2009. The best of luck to you. I hope there’s something here you can use.

Leave a Reply

Your email address will not be published.

This site uses Akismet to reduce spam. Learn how your comment data is processed.