Meet Doug. He’s part of the pulmonary fibrosis (PF) community on PatientsLikeMe and is living with a condition specifically known as chronic hypersensitivity pneumonitis (HP). It’s similar to other types of PF, but also has its differences. We caught up with Doug for an interview to help spread the knowledge about these two conditions, but learned so much more. He shared what it’s like to live with HP, how he uses PatientsLikeMe to learn more about his own health and how the community has helped him to stay inspired in his fight.
Can you share a bit about your chronic HP? Can you explain to our blog followers how it’s different than IPF?
I believe the major difference is that with hypersensitivity pneumonitis there is a cause. If I’m correct there are three forms: acute, subacute and chronic. All are caused by exposure to an antigen that may or may not be identified. In my case, I have chronic hypersensitivity pneumonitis (HP). My specialists have determined that it’s not necessary to identify the antigen since my condition is chronic and cannot be reversed.1
What was your diagnosis process like, and how was it different than what you’ve heard about getting diagnosed with IPF?
Of course I can’t compare how it ”feels” to have HP vs. IPF, and I’m no expert, but I will give you my version of the difference between HP and IPF. First, both are forms of pulmonary fibrosis. With HP, the fibrosis forms primarily higher up in the lungs, and IPF forms in the lower part of the lungs. Air trapping occurs in cHP but not in IPF. I have no idea how this impacts me as a patient, but I’ve included a comparison from Dr. Jeff Swigris.
Apparently another difference is that HP fibrosis is caused by inflammation, whereas IPF is caused by different forms of pro-fibrotic influences. Generally speaking, specialists recommend an anti-inflammatory drug (prednisone) and/or an immunosuppressive such as azathioprine, mycophenolate, cyclosporine, or cyclophosophamide. In my case, my doctor and I agreed on a course of mycophenolate. Initially, it had significant side effects, such as severe fatigue, poor sleep, weight gain and depression. I switched to Myfortic, which is a different brand of mycophenolate, and now the side effects are minimal. I have much more drive and I feel much better! It’s still too early to tell if it will help. My concern is that my pulmonary function test (PFT) results have dropped in the last four months, so I’m concerned that I’m deteriorating. At the moment, I function almost normally. I have a walking routine that includes a 7.5 K walk, which I can complete in an hour. I now require supplemental oxygen for long flights, but I still consider myself lucky!2
You frequently use the InstantMe and Quality of Life tools on PatientsLikeMe – why do you like to use these to donate your data?
I find it’s good to have a record of your health pattern. This can include how you feel daily as well as a record of the medications I’m on. I print out portions of this for my doctors’ appointments and it helps me be well prepared.
How have others in the HP and IPF communities on PatientsLikeMe helped support you on your journey?
My biggest concern is that HP is the “poor cousin” in the PF family! There are very few of us online and therefore it’s difficult to learn as much as I’d like to! Nevertheless, I have learned a lot about shared aspects of PF such as patient care, oxygen therapy and lifestyle issues. I continue to be inspired by those who share this fight with me and I’m always grateful when I’m able to learn something that will help me.
I’ve always told my wife I plan to die of old age! One of my strengths is that I have a great attitude. Participating in platforms like PatientsLikeMe helps me not only learn more, but it fortifies my attitude!
Many people may not know about rare conditions like HP and IPF. If there was one thing you thought someone who doesn’t have a clue should know about HP, what would it be?
That’s a tough question because there is so much more I need to learn before I feel I can address this question. I suppose the key with HP is that if you have developed acute or subacute forms of the disease you may be able to arrest the fibrosis before it progresses too far.
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