Read time 5 minutes
Q-1) Could you briefly describe your story?
A-1) My Story starts 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 progressively got worse. I was coughing so hard that I was coughing blood. My husband found where an international hospital was in Japan. Many tests were done, and a shot of antibiotics were given. We flew home the following day, so I could seek professional medical advice straight away in Australia.
Over the four years, I underwent many tests that were both physically mentally and draining. Sadly, tests never found anything and that becomes so frustrating. One doctor even told me directly 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 short breath, and stinging and felt so sick my husband took me to hospital ER and it’s here where the ER Doctor informed me the ER Doctor has come to the side of the bed and informed me that it’s not in my head and that they have found what it is. Extrinsic allergic Alveolitis, also known as Hypersensitivity Pneumonitis (HP for short) I have the chronic form of HP.
My disease is classed as rare, in fact 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 were housed in the house in the sunroom now downstairs in their own shed with aircon, music, and fans, open windows and doors.
Now that I have what it is and possible cause, I got a new doctor and a referral to a private lung specialist, he ordered a new CT scan, and bloods. It’s also those tests that he noticed the disease had spread to two lungs this takes us to the late August of 2022 and on this appointment the specialist is wanting me to 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 a two-week period. That part is what hit me the hardest.
Q-2) How has the disease changed your life, in terms of diet, work, and other activities?
A-2) I have had to stop work due to working in a pharmacy and sick people come in and with my immune system down I would be at risk of catching all kinds of illnesses. I can’t just jump on planes and travel as I want due to oxygen stats down, nor can I walk where there’s hills or many steps as leaves me feeling short breath and fatigued.
I have changed what I eat, losing weight so it’s not so much strain on the Lungs, I have also changed 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 and have a cleaner to really clean the areas I can’t and that helps a great deal. 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, depending on government initiatives; or reading about your disease.
A-3) I have joined many online support groups and find talking with others around the world has been helpful, I get many articles sent to me and that helps along with online research. Asking questions to my GP and specialist, seeking the 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 we do in my health care, specialist care and medications, blood tests, and some are free CT scans are free through our 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 where I spent many weeks at a time. But Marter is private which we did pay for. A friend set up a go fund page to help, but sadly didn’t do well, as many people are also struggling with the high cost of living and interest rates 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 and do what we once did except for myself I’ve stopped work and stay home so 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 with 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 conditions. 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, you are not superman or a super woman you are human and 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!