Hi I am Bridget. I am 19 years old and I have PCD.
I have known I had PCD since I was almost 12 (I was 11 years old when I was diagnosed with PCD). Before this, I was constantly told by GPs that I had a cold, or it was asthma and I will grow out of it. I constantly experienced fluctuating hearing, which definitely affected my schooling experience. I constantly had a cough, a runny nose and no sense of smell. I felt isolated, thinking I was contagious. With no sense of smell, when other kids held their noses and made a funny face, suggesting the presence of a bad smell, I held my nose too!
I was diagnosed at the Royal Brompton Hospital in London, England during a family holiday, as suggested by a UK respiratory specialist based at the Royal Childrens’ Hospital. They had one of their PCD clinics on that day. They discovered I had no outer dyneium arms and Bronchiectasis, a permanent, irreversible scaring of the lung tissues, due to a lack of treatment. I was shown some physiotherapy techniques straight away and started antibiotic treatments as soon as we got home. The diagnosis meant I could finally start managing my health.
At home, I saw a respiratory specialist at the Childrens’ and would get IV antibiotics treatments 2-3 times a year, called “tune-ups”, when physio and oral antibiotic treatment wasn’t working effectively. Due to the lack of PCD knowledge and awareness in Australia, I would be treated as a Cystic Fibrosis patient and met quite a few people my age with CF. The similarities in lung damage meant we had a lot to bond over in a judgement free way!
It was at the Royal Children’s Hospital where I was introduced to peer support groups that cater to young adults, aged 12-25, living with chronic-illnesses, like ChIPS and Aardvark. ChIPS, stands for Chronic Illness Peer Support, and is an amazing, inclusive, peer driven program that has taken me on camps around Victoria, and various social events like bowling, high ropes, movie nights. Aardvark is a similar program, but specialises in musical activities. They create opportunities to expand your musical knowledge and abilities, with concert performances and studio recordings. If you are a young adult aged between 12-25, I highly suggest reaching out to these organisations as they make you feel more comfortable and confident with your new-found illness, all while having an amazing time!
Yet, having numerous, and pretty much constant infections, throughout my teen years has meant I have missed quite a bit of schooling. This has affected both my learning and social opportunities. I learnt earlier on in high school to ALWAYS EMAIL teachers! Doesn’t matter if you emailed them yesterday, email again! If you give them as much information on the workload you can complete, as soon as possible, schools can be very accommodating.
Luckily, I have grown up in a digital age, with facebook, instagram and snapchat, so I could still keep up-to-date with all the “goss” in high school. I passed my year 12 studies in 2014 and am now studying my second year in sound production, live and technical services at uni. I have always been an avid music lover and I am loving all the new skills I am learning in sound recording, TV, radio, editing, lighting. I have also been juggling a part-time casual job at the movies since I was 15. I love having my freedom and sense of responsibility. I mostly manage to work 2/3 shifts per week. Sometimes I have had to cancel a few shifts especially when I miss physio sessions and my health declines. Having the motivation of studying something I am passionate about and will one day hope to have a career in, whilst taking on more responsibilities has given me the push I need to manage my health better.
I have a few things on my maintenance plan at the moment. I use a sinus rinse a few times a week, combining that with a nasonex spray daily. I do a daily airway clearance physiotherapy session of inhaling hypertonic saline 6% with a nebuliser, which loosens the mucus in the lungs, before performing breathing techniques on a flutter device and huffing exercises. Keeping on top of physiotherapy can be a difficult task during early adolescence and adulthood. I still miss it when I feel I’m busy, so I always make sure I’m coughing up through out the whole day. For example, at uni, the campus is quite big and classes can be on various levels in different buildings. Instead of taking a lift or the escalators, I walk at a fast pace up the stairs and quickly do a huff and a cough in a toilet. Thankfully, there’s toilets on every level at uni! Creating situations for me to be my own cilia where ever means I don’t have to work as hard during physio sessions.
Now that I am a little older, and wiser (as much as a 19-year-old can be) I feel more confident to talk about my PCD and why I need to “flake out” on plans. I have an amazingly understanding boyfriend who finds my sniffles “cute” and wishes he could cough as loud as me! My friends now know and understand my condition, after years of neglecting to tell them. I hope this website further raises awareness for PCD around Australia, like they have achieved in Europe, so people can get onto their maintenance treatment straight away to prevent irreversible damage.
- Bridget :)
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I am hoping by the new diagnosing facilities, less of us will experience severe damage to vital organs early in life!Bridget Bourke