Living with lung disease
I was diagnosed with asthma as a young child. I had no idea that this would impact so heavily on my future. Along with numerous allergies, hay fever and sinus difficulties, the asthma became more severe as I got older. High school recess and lunchtimes were often spent having nebulisers in the sick bay (especially during winter) - not especially conducive to a teenage social life. My passion for music and dance commenced at a very young age and this became an essential coping mechanism. I thoroughly enjoyed piano and flute lessons, playing in orchestra and singing in chorale. Breathing difficulties made this a genuine challenge but I loved it.
At 16, I began having regular fainting spells and convulsions. Eventually this was diagnosed as Hypoglcaemia (low blood sugar) although not diabetic; I was required to monitor my blood sugar levels by finger prick testing several times a day to avoid losing consciousness. I graduated high school and went on to tertiary studies in music. A bout of pneumonia at 18 saw my asthma deteriorate into serious lung disease and my health has never been the same since. My late teenage years and early 20's saw multiple ambulance rides to Royal Perth Hospital and lengthy stays. I vividly remember one particular occasion being unable to breathe and rushed to a resuscitation unit where I experienced a Respiratory Arrest. I regained consciousness to find my clothes had been cut off so the medical staff could use equipment to save my life. I was 21.Experiences such as this helps you to value life and realize just how fragile we are.
Hospital visits became a regular part of life with constant blood tests, breathing tests, specialist appointments and allergy desensitization treatment. Numerous severe allergies or anaphylaxis means I don’t leave home without Adrenaline. I had to defer University as I missed so much but later studied Social Science (Childcare). Text books accompanied me to weekly appointments as time became more valuable. I managed to work part time in childcare and teaching piano trying best to support myself in between several admissions each year. I tried to live the most normal life I could in a world of illness that’s far from normal.
The medications began to cause a myriad of problems - most continue to this day. Steroids are the main culprit but they have saved my life. Long periods of unusually high doses have weakened other parts of my body. Stomach ulcers, nausea, immune problems causing vulnerability to infection, vision deterioration, weight gain, chronic fatigue and sleep issues. At 23 I was diagnosed with Osteoporosis. On 6 occasions I’ve broken ribs and suffered spinal stress fractures caused by coughing I even managed to break my foot falling off my shoe!
Feeling like I was spending more time in hospital than at home, I moved to rural SA and lived there for 4 years in an attempt to improve my health by changing my environment. I moved back to Perth in 2001. The following year I spent a total of 4 months in Sir Charles Gairdner Hospital. These admissions were to either the ICU of the Respiratory High Dependency Unit where I’d spend up to 6 weeks at a time.
It was around this time that I met my “Miracle Man” Professor Phil Thompson. His unique ability to look outside the square and willingness to trial alternate treatments (eg Cyclosporin-transplant anti rejection drug) has been instrumental in improving my lung condition. Professor Thompson’s extensive efforts resulted in me commencing a break-through medication (Xolair). His care and determination to improve my health and quality of life is appreciated beyond words. My admissions are now far less frequent and much shorter. I believe it is because of Professor Thompson and my incredible GP Dr Henrietta Bryan that I am still here to today to tell my story. How do you thank people for having kept you alive?
I’ve had 3 spontaneous Pneumothorax (collapsed lung), countless chest infections including pneumocystis, recurrent tonsillitis, ulcerative colitis and migraines. I’ve had Glandular Fever twice and CMV (Cytomeglovirus) with 3 relapses. I have a compromised immune system with scarred lungs and multiple nodules in the airways. Chronic health issues have a profound impact on you and the people around you. I have been limited socially due to my condition but quality time with friends is more important than quantity. Due to chronic fatigue, planning is essential to sustain the most energy possible. Many hours are spent with various Dr’s, specialists, tests and treatment. I have between 1-5 medical appointments each week. Illness is very time consuming! Finding energy is a huge challenge. I sleep more than my friends 2 year old!
In 2004 I was diagnosed with Ankylosing Spondylitis (predominantly inflammatory arthritis of the spine). This has caused immense, constant pain and affects most of my joints although my back and neck have been targeted. Some mornings it takes hours before I can walk properly due to joint pain and stiffness. Specialist physiotherapy at Shenton Park Rehabilitation Hospital taught me the necessary exercises to maintain mobility. Strong pain relief is required several times a day. I recently began a treatment administered via IV drip to help ease the symptoms but an anaphylactic response saw that quickly haltered. In 2 weeks I’ll commence a new treatment where I’ll self-administer injections at home.
Last year I began experiencing acute breathlessness. After Pulmonary Physiology tests, x-rays, CT scans and a bronchoscopy, it was suspected I had Sarcoidosis. A thoracoscopy (lung surgery) with biopsies confirmed this suspicion. Multiple nodules have grown in the airways so inflammation with infection can be difficult to manage.
Although I often appear well to most people, every day presents a challenge in some way. It is extremely rare for me to be totally honest about my health and its impact on my life. I want people to see me for the person I am and not concentrate on the illness. I’ve learned to mask a great deal of my symptoms and emotions but I guess that’s my way of coping and attempting to feel “normal”. I surround myself with positive people and am very blessed to have some most understanding friends.
LIWA (Lung Institute of Western Australia) has become a second family. The wonderful staff in the Clinical Trials Unit continue to be an imperative part of my treatment on a physical and emotional level. I believe the work done at LIWA is invaluable. If such vital research can improve community awareness, understanding and treatment, people may not need to endure the health issues I have. I am delighted to be associated with such a prominent organization leading the way in lung disease.
Within constraints, I have done my best to live a normal life and certainly plan to continue. If I had the opportunity I wouldn’t change things. Of course life would be much easier but my experiences have shaped who I am today. I’ve been most fortunate to have met some incredible and truly inspiring people on my journey. Every day is a blessing for which I am truly thankful. Life truly is a precious gift.