Jennifer Reid is no stranger to rare or chronic illnesses. Over her lifetime, she grappled with Guillain-Barre syndrome (GBS) in 2000; it took nearly thirteen years of treatment and rehabilitation before getting the all-clear. She was later diagnosed with whooping cough as an adult in 2005 and Legionnaires’ disease in 2006. With a chuckle, she shares:

“Years ago, I always said it would be my lungs that will get me.”

Her prediction came true when she was diagnosed with chronic hypersensitivity pneumonitis (CHP) after a years-long diagnostic journey. Although this journey has been challenging and difficult, Jennifer is learning to manage her CHP—while still living a full, happy life. She moved to Australia from New Zealand 22 years ago and has built something beautiful: a home with her husband Danny (who owns a pet shop), their five daughters, six birds, and two pet rats: Dora and Frankie.

Now, Jennifer is opening up and sharing her story to show people that there is still hope. That living with a rare condition does not need to be the end of the road for them. Most of all, she aims to show people that they are not alone.

Recently, Jennifer sat down with Patient Worthy to discuss her diagnostic path, what we know about chronic hypersensitivity pneumonitis, how she is managing today, and her advice for others going through similar journeys.

Pursuing a Diagnosis

Jennifer and her husband have always enjoyed traveling all over the world together. It was a trip to Japan that first sparked her diagnostic journey. Jennifer and her husband adored the diversity of scenery, the breathtaking mountain views. But Jennifer started feeling ill in the midst of their trip. She came down with a persistent and hacking cough, sometimes coughing up blood. Knowing that something was seriously wrong, Jennifer’s husband found an international hospital where Jennifer could be tested. Soon enough, the pair chose to fly back to Australia for additional care and treatment.

For the next four years, Jennifer underwent numerous testing that was both physically and mentally draining. She shares:

“The tests never found anything. One doctor even told me directly that what I was experiencing was just in my head. After an episode where I couldn’t breathe, I had a CT scan at the Cairns Base hospital. They sent me home, but two weeks later I was back again and suffering from the same thing.”

Overcoming Medical Obstacles

After the doctor told Jennifer that everything was all in her head, she found a new general practitioner (GP) who referred her to a lung specialist. The lung specialist was attached to the hospital, so he was easily able to view Jennifer’s tests.

Further testing at the hospital found that Jennifer had extrinsic allergic alveolitis, also known as chronic hypersensitivity pneumonitis. Says Jennifer:

“Some doctors were in shock when they found out what I really had. Nurses were crying. At first, not many people told me about what alveolitis was. I was not given any leaflets, nor did anyone sit down with me to discuss. But from the look on the medical staff’s faces, I knew it wasn’t good.”

Doctors kept asking Jennifer if she has birds, which she does: a love bird named Raine, two cockatiels named Snowy and Big Bird, and three budgies named Mork, Min, and Stormy. She was told that, over time, she breathed in particles from their feathers and droppings, causing a reaction which inflamed the lungs. Jennifer shares:

“I was left numb. I kept thinking, ‘Not my babies! How could they have possibly done so much damage to my lungs?’ And then the numbness worsened when I was told by doctors that my life expectancy was seven to nine years. This left me in shock with so many questions.”

Jennifer was hospitalized and placed on medicine as doctors worked to stabilize her.

Then her new lung specialist stepped in to help. On their first visit, he ordered a new CT scan. Jennifer says:

“Two weeks prior, the hospital’s CT scan showed that only one lung was affected. When my lung specialists did the CT scan, both lungs were affected. Within one week, my husband and I traveled to Mater Hospital in Townsville QLD for a biopsy.”

The biopsy confirmed Jennifer’s CHP diagnosis. At this point, her lung specialist was able to provide more information on CHP and how sick Jennifer actually was.

Yet another obstacle soon emerged. When Jennifer asked about support groups in Cairns, she was told that she was the only patient in the area with CHP. Ultimately, this led her to pursue help elsewhere. She has joined overseas support groups for people with CHP and managed to connect with other women in Australia. From sharing articles to asking questions about symptoms, this has been an immense mental help.

Join us in Part 2 as we discuss what chronic hypersensitivity pneumonitis is, treatment options, how Jennifer is doing today, and advice to others on this same journey.