Read time 5 minutes
Q-1) Could you describe your story?
A-1) Hey I am Jennifer. People also call me Jenni.
My Story started around 4 years ago while on holiday in Japan on our way home from our Europe trip. I started having a persistent and hacking cough that got worse over the trip. It was while in Japan that I got worse. I was coughing so hard that I was coughing blood. My husband found where an international hospital in Japan. Many tests were done, and a shot of antibiotics was given. We flew home the following day. I sought professional medical advice straight away in Australia.
Over four years, I underwent many tests. They were both physically mentally and draining. Sadly, tests never found anything and that becomes so frustrating. One doctor even told me that what I was experiencing was 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 suffering from the same thing. Short breath and stinging pain in the lung area. This was in July of 2022, and wow what a journey to this point.
Two weeks later again I was experiencing shortness of breath. I felt quite sick, my husband took me to the hospital. The ER Doctor came to the side of the bed and informed me that it was not in my head and that they had found what it was. Extrinsic allergic Alveolitis, also known as Hypersensitivity Pneumonitis. I have a chronic form of HP.
My disease is classed as rare. When asked if there were groups in Cairns with people with the same disease the answer, I got is I’m it.
The Pathogen of my disease is from Avarian, the birds I have as pets at home. They resided in the house in the sunroom. Now downstairs in their shed with aircon, music, and fans, open windows and doors.
Now that I have what it is and the possible cause. I got a new doctor and a referral to a private lung specialist, he ordered a new CT scan, and blood. It’s also during those tests that he noticed the disease had spread to two lungs. This took us to late August of 2022 and on this appointment, the specialist wanted me to have an urgent biopsy. This biopsy was done at the Marter Hospital on 2nd September 2022. It is this biopsy that was 100% confirmed for HP and what had caused it, my beautiful babies my birds.
The Disease had spread from 1 to 2 lungs within two weeks. That part is what hit me the hardest.
Q-2) How has the disease changed your life? Your diet, work, and other activities?
A-2) I had to stop work due to working in a pharmacy and sick people coming in.
My life changed quite much due to Hypersensitivity Pneumonitis:
With my immune system down, I would be at risk of catching all kinds of illnesses. I can’t jump on planes and travel anymore due to oxygen pressure. I can’t walk where there are hills or many steps which leaves me feeling short of breath and fatigued.
I have changed what I ate. I lost weight so there’s not so much strain on the Lungs. I also changed the cleaning chemicals in the house and what I use on myself. I’ve started taking zinc and turmeric each day. We run a Samsung air purifier in the bedroom. The area of the house needs to be kept clean. Eating a healthy diet is working wonders with fresh fruit and vegetables. I’m also eating more protein to help with weight loss.
Q-3) How do you keep yourself updated about your disease? Please specify if you are a member of an advocacy group. Do you depend on government initiatives; or reading about your disease?
A-3) I have joined many online support groups.
I found that talking with others around the world has been helpful. I got many articles sent to me and that helps along with online research.
Asking questions to my GP and specialist is worthwhile clearing doubts. Seeking answers and researching natural products that are good for lung health.
Q-4) Are your treatment options easy to access? Are they expensive? Is there a permanent cure for your disease?
A-4) I pay for everything.
My specialist care and medications, blood tests, and CT scans are free. I have my Medicare system. Biopsy we paid for and stay in hospital. Any special tests we pay for as well as the GP.
Q-5) How did the treatment affect your family’s financial situation? Did you have to take loans or borrow money from friends and family?
A-5) We have savings, so we used what we had. Public hospitals are free, and I spent many weeks at a time. But Marter is private which we did pay for.
A friend set up a GoFundMe page to help. But sadly, it didn’t do well. Many people around are struggling with the high cost of living. Interest rates are also climbing high for some.
Q-6) Are you trying out any alternate healing techniques?
A-6) Yes Zinc and Turmeric and more greens,
Q-7) How did you and your family deal with your changed circumstances?
A-7) We are doing what we must.
I’ve stopped working and staying home. I lessen myself getting sick from others and making my condition worse.
Q-8) Please share one aspect of your journey that touched you most.
A-8) Listen to your body, you are the best doctor when you know something feels wrong. I have opened up my journey to others, to educate them.
Q-9) Do you have a secret to staying strong? What inspires you to keep fighting?
A-9) Positive attitude, a top must stay bubbly and keep teaching yourself on the condition. Don’t just sit back and expect others to do it for you. One must get up and do it yourself, keep your mind active, and join groups and support areas to help your condition. Research never stops keep learning.
Q-10) What would be your message or advice to patients diagnosed with rare diseases?
A-10) Positive power and get a good support team behind you. Cry if you must, get and ask for help where it’s needed. We are not Superman or a superwoman we are humans.
When things are hard seeking help is a good thing. Sharing your thoughts and feelings as mental health is key. Find the things that make you happy. Never give up! You’re a WARRIOR, and YOU’VE GOT THIS!
DISCLAIMER
The views expressed in this article are the author’s own and do not represent any kind of medical advice.