STATEMENT OF SUSAN (SUE) ELIZABETH MEEUWISSEN - 1999 (edited)
I reside at 77a Rose Terrace Wayville in the State of South Australia. My occupation is that of multimedia and web designer.
My date of birth is 15th April 1962 and I am 36 years of age. I am single (never married) and I have no children.
I was born and raised in Melbourne, Victoria and I came to live in Adelaide in 1989.
HEALTH HISTORY - MY CYSTIC FIBROSIS
I was sick from birth with Cystic Fibrosis (which is a genetically inherited condition which affects the lungs, digestion and life). I had a collapsed lung at 3 months of age and this is when Cystic Fibrosis was diagnosed.
When I was a child exposure to environmental tobacco smoke particles made my chest wheeze and it was harder to remove sputum. This would also cause a lung infection to flare up. Soon flare-ups needed more intensive physiotherapy and antibiotics.
When I was 13 years of age I had a very bad exacerbation of my Cystic Fibrosis. It was around this time that the Doctors realised I also had asthma in these lungs.
From age thirteen onwards my ability to study was seriously compromised by exacerbations caused by moving in public places where people smoked. My ability to socialise and participate in community activities was greatly restricted. Hospitalisation was necessary on many occasions to receive intravenous antibiotics because no matter how hard I tried, the infection would be out of control.
At eighteen I was on many drugs for asthma, including prednisolone, Theo-Dur and Ventolin. Sometimes I would be hospitalised and treated with intravenous antibiotics and still not respond effectively. I would be sent home on increasingly larger amounts of drugs for asthma.
About 1984 (at age 22) I found that I was going up and down with my breathing while on these drugs and the drugs were giving me side effects such as sending me towards diabetes. I weaned myself off some of the drugs and modified my environment further, as when I went shopping I would move away from anyone smoking and going to the Cinema or Theatre, I would rush through the foyers holding my breath.
In 1984 I attended
a Jaycees function in Glen Waverley, Victoria. I had explained to the organisers
that smoke made my breathing worse and they asked people not to smoke. It
was a large room and during the evening two people at the other end of the
room lit up. I was having an increasingly difficult time breathing. I took
some Ventolin from a puffer and relaxed. I did a gentle cough and blood poured
from my mouth and
drenched my tissue. I immediately left the building and my parents picked me up. My lungs rarely bled.
I became more careful of the environments that I would attend. I remember distinctly walking down an aisle at a supermarket and suddenly struggling to breath. It turned out that a person was smoking in another aisle.
In 1986 (at age 24) my health was so severe affected with pneumothoraces and life threatening exacerbations that I made a decision not go to any place where people smoked. I reached out to groups such as the Anti-Cancer Council; Action on Smoking and Health, Asthma Foundation, Cystic Fibrosis Association; Non-Smokers' Movement. I took an active role in promoting awareness of the dangers of passive smoking.
With the help of Professor Glenn Bowes, my Respiratory Physician, Sally Fawkes, the Alfred Hospital Health Promotions Officer and various other individuals within the Alfred Hospital and pressure from outside sources, smoking in rooms on the ward and in the foyers was banned.
The importance of the adverse health effects of passive cigarette smoke on non-smoking individuals was finally acknowledge in a medical institution. However changes were slow because of the fear of conflict and the perceived rights of smokers. This meant that much extra suffering and distress occurred and much of my valuable limited personal energy was spent chasing a basic right of clear unpolluted air.
I remember attending a party where no one smoked however it turned out that one individual had smoked some time prior to the party. This individual was seated a few feet away and my breathing became difficult. The production of mucus from my lungs increased and became stained with blood.
From then on I kept my distance from those who smoked. My relationships with people were affected because of these restrictions. Attending functions in the community was difficult. The consequential isolation and discrimination that I experienced made my life so much harsher, lonelier and more difficult than the norm.
Even attending functions by the Cystic Fibrosis groups were difficult because it was not fully accepted by some individuals that passive smoking could be so detrimental.
I found, ironically, that people with little or no connection with the medical system were compassionate and more willing to change. People who smoked, when made aware of the problems that I had, were more than happy to modify their behaviour when they smoked. Only a couple of times in my experience have I met individuals who did not care and they were not happy with their own life anyway. I feel the fear of conflict felt by many regarding the restricting and banning of cigarette smoking is a fear which has caused unnecessary delay in creating a safe environment for all people.
EDUCATION AND WORK HISTORY
I completed my Higher School Certificate at Cleeland High School, Dandenong in 1980.
1978 I did a Secretarial Course at Stott's Secretarial College in Dandenong, where despite a drop in my health which precluded my ability to work during 3 of a 7 weeks examination time, I attained Honours (the highest qualification) because of the quality and speed of my work.
I studied for a Bachelor of Arts part-time completing 1st year Philosophy at Monash University in 1981. I had to quit as I was affected badly by the cigarette smoking on campus. I completed most of my assignments whilst in hospital.
I did the odd bit of word processing mainly for students and some data processing for Monash Centre for Education and voluntarily assisted in community groups.
I came to live in Adelaide in 1989.
I moved because of the poor quality of air in Melbourne. At
that stage my lungs were still suffering from Cystic Fibrosis and Asthma.
The reason for my move was that I had come to Adelaide for a "Cystic
Fibrosis Adult Camp" and I was so impressed with the clean quality of
the air that I decided to move to increase the chances of staying alive longer.
In Adelaide I worked at the Royal Adelaide Hospital for 5 days as a Casual Ward Clerk (basically Clerical and Secretarial Duties) before I was affected by environmental tobacco smoke inside the Hospital (my lungs bled) and I had to cease working.
I completed TAFE courses at the Adelaide campus in desktop publishing and communication in 1991 and a WEA course in marketing.
I have also done voluntary work for Disabled People's International - again basically clerical and secretarial.
I have also worked for the Cystic Fibrosis Association. I found the premises were not always accessible and going to the toilet difficult because of people smoking from nearby offices and the deli.
In 1993, whilst in Melbourne, awaiting the transplant, I did the first half of the first year subjects of Accountancy and Psychology through the Open Learning Programme connected to Monash University. For assignments I usually had High Distinctions, but due to health challenges around the time of the exams, I only attained a Distinction and Credit for these subjects. I was bed bound and oxygen supplement dependent and experienced at the time, a dummy run for the transplant, and major life threatening asthma attacks, and an eye infection which prevented my study for over a week just before the exam. I ceased the study because it was getting physically more difficult to stay alive and also to concentrate on learning.
In 1995 I some study at Flinders University. I studied Economics but had to leave because of the fact that people were smoking on campus. I could not get from my car to the lecture theatres, to the library or student buildings without risk of breathing other people's smoke.
I completed two TAFE courses in massage in 1995. Intermittently I did small jobs at OptCom when they needed someone fast and accurate to complete work in the correct time schedule. I had a regular client for word processing for a newsletter which I lost when I experienced a hiccup in my health for a short period in 1996.
In 1996 I undertook a HETA course for running my own business and then saw an advertisement in the paper regarding the Certificate Level 4 in Applied Design (Interactive Multimedia) at Torrens Valley Institute of TAFE.
The Administration at Torrens Valley Institute of TAFE were really good in relation to my disabilities. I was provided with my own car park with my number plate painted on the tarmac and smoke free access into the buildings.
The Multimedia Course was basically about the use of computers and computer equipment with producing multimedia products and the design of Internet (World Wide Web) sites.
Such design involves the use of graphics, images, text, sound, movies and animation.
At Torrens Valley Institute of TAFE I met two men who were also doing the Multimedia Course. Together we decided to form a business which would do Multimedia and Web Site design work.
After we finished the TAFE course we did a further course run by the South Australian Government to teach new businesses further skills to assist in running their business.
I completed a course in Project Management at WEA Adult Education in March 1997.
Then we applied to do a NEIS course run by the Federal Government to teach upcoming businesses the basics in running a business. This course was run under the New Enterprise Incentive Scheme (NEIS) under Lock L S H.
The reason that I did the Multimedia Course was because of my secretarial and computing background and also because of the very nature of Multimedia work - a lot of design work done on computers within a team. I thought that I could handle it given of my present disability (severe asthma due to environmental tobacco smoke and an inability to do physical type work).
I basically put more than $12,000 of my hard-won savings into the business plus computer equipment that I had (Apple Mac and IBM-compatible computers, scanner, printer, programmes etc.
I had a written partnership agreement with my partners.
Intramedia Design was more successful because I was and am an excellent networker, marketer, public relations person, administrator and skilled worker. I have a lot of business people contacts and also political contacts through the Australian Democrats of which I was a Candidate during the last State Election in the Adelaide electorate in 1997 and SA Federal Campaign Director during the recent Federal Election in 1998. I also produced their monthly newsletter and working on the State Website.
My two partners are excellent at designing graphics and web sites on the computer but they are lousy at networking and limited in finding new opportunities for business and slow with word processing and administration. Currently they are linked with another business to aid in supplying work.
We have been to a number of "networking" receptions together - and I succeeded in talking with a great range of people whilst my partners stood to one side and talked basically to each other.
I was coping quite well with the work for Intramedia Design until I had a major asthma attack due to some one smoking at Merlin Internet on the 30th January 1998 resulting in my being hospitalised at the Royal Adelaide Hospital from the 30th January 1998 until the 21st February 1998.
I could not work whilst I was hospitalised. I did not have access to phone lines for using a modem or speaking with my partners, clients or potential clients.
I say that if I functioned at my best, was not sick with an asthma attack, used my political and business contacts and networking opportunities to generate business I believe that I could easily have earnt $1,000 nett per week for myself.
I consider myself to be highly skilled - in that I have the following competencies:
· Computer, multimedia and secretarial skills
· Organisational and management skills
· My ability to network and do public relations work which has resulted in my extensive network of business and political contacts
· I also have massage skills - at which I could at least earn around $30 per hour.
Even if I just did straight word processing I could earn around $30 per hour. The only thing that stops me doing word processing is that if I have another cigarette related asthma attack then I will drop out of work and the flow of work (from existing and new clients will also drop out). I would have to basically have to start again with new clients after each hospitalisation. This is the main reason for needing partners in my business so that the business can continue during any periods of ill health and hospitalisation.
Prior to the admission on the 30th January, I had never received IV antibiotics for my chest my before my transplant. Since then I have not been able to remove my infection, and will require IV antibiotics intermittently which can affect my ability to use a keyboard.
MOVING TO ADELAIDE FROM MELBOURNE
I moved to Adelaide in May 1989 (at age 27). Unfortunately, the major public hospital in Adelaide, the Royal Adelaide, was not a safe environment for me. The one place in the world where I had no choice other than to go as my health and life depended on. It was dangerous. Smoking occurred in foyers and smoke actively drifted into the Respiratory Ward. I turned to the Doctors for help. They were pleased that smoking no longer occurred in Wards and but did not think that smoking elsewhere was too much of a problem.
I tried to work as a Casual Ward Clerk with the Royal Adelaide Hospital but only managed five days of work before my lungs ended up bleeding from being assaulted by cigarette smoke in the corridors. I was too scared to go into the Royal Adelaide Hospital for treatment. People from Domiciliary care and those who shared my home helped and an admission into the Alfred Hospital in Melbourne picked me up.
Other patients, staff and visitors at the Royal Adelaide Hospital supported me in my push for a safer tobacco smoke free environment. I lobbied various people at the Royal Adelaide Hospital, reached out to the Government and many health/disability groups. radio, television and newspaper gave my cause coverage. I felt that it was a bit sad that a vulnerable and physically frail patient such as myself had to speak out so strongly and go to such extraordinary lengths in order to stay alive and receive safe medical treatment.
Eventually smoking was banned completely at the Royal Adelaide Hospital although I have found that safe smoke free access through the hospital grounds to the hospital remains a problem and enforcement of the smoking ban is not thorough and consistent. Further lobbying by me resulted in the RAH having yellow lines drawn on the ground beyond which smoking was not to take place. I found that this was not policed in anyway and that the lines were in fact too close to the building. It made going to the RAH a hazardous life experience as I had life threatening episodes of being assaulted by passive smoking in the Hospital grounds - which required hospitalisation - not at the RAH! It was far from ideal.
My last admission
at the RAH in January 1993 necessitated that I have a chest tube inserted
for a pneumothorax. I had a shared room at the RAH and suffered great pain
and breathing distress because some of the visitors to the other patient were
smokers. At that stage I had little sense of smell, only my bodily changes
alerted me to the problem. After much pleading to the Acting-Charge Sister
(begging and crying)
I was given a safer room. My lung took some time to re-inflate and appeared okay until a security guard, who was a smoker, came into my room and I felt sharp pain and the reaction of my body told me that my lung had collapsed.
I spent the time during this admission to push further for safer access and I have been told since that the lines have been redrawn.
Other incidents which have occurred in SA were some very strong asthma attacks caused by small exposures. One time when I was attending a meeting on disability and access re education at the Disability Information Resource Centre in Gillies St, which was supposed to be in a smoke free building, there was an open door and a person smoking some metres from the building entrance. The cigarette smoke had drifted down the corridor and I had to be taken to Emergency and given hydro-cortisone and many inhalations of Ventolin. A few times I had small pneumothoraces (accumulation of air or gas in the pleural cavity resulting in collapse or partial collapse of the lung on the affected side) during which I laid low at home because I was too scared to go near the RAH for treatment. The Royal District Nursing team helped me get back up again on many occasions. On an occasion outside the Arts Gallery of SA, North Terrace, at the outdoor eating place, some people two metres behind me lit up and again I experienced sudden sharp pain, less of air entry and audible wheezing - my lung had collapsed again. I was hospitalised and even ten days later my lung was still collapsed.
I had a strong fear of the Royal Adelaide Hospital because my first Respiratory Physician at the Royal Adelaide Hospital told me that he would put me in a "room full of smokers to prove to me that it would not hurt me". My next RAH Doctor told me that "Smoke was just an odour". Their attitudes meant I felt strongly that my health care was being compromised and I was looking for an alternative source of medical help.
Again at this stage, and since my birth, please remember that I was affected with Cystic Fibrosis and I was extremely limited in my choice of Doctors as I required Specialist Respiratory Physicians (as do all chronic Cystic Fibrosis sufferers). I had no real practical choice to go elsewhere other than the Royal Adelaide Hospital.
I had a double lung transplant in May 1994 at the Alfred Hospital, Victoria.
The double lung transplant in May 1994 made me feel 300-400% better than I had ever felt previously in the whole of my life.
After my lung transplant I went overseas to Europe for a Smoking and Health Conference. I could never have done this with my old lungs affected by Cystic Fibrosis. I would also regularly walk between 3 - 6 kms usually 3 times a week.
After my double lung transplant I managed to walk the Bay City Fun Run in two hours with no ill affects whatsoever. I rang my mother and she was amazed that she could not hear me puffing or wheezing she commented on it as she was so used to my wheezing after I had even walked a short distance.
Please do not forget that for all of my life I have had Cystic Fibrosis. This meant that I constantly had mucus secreting into my lungs and I had repeated attacks of bronchitis. For treatment I would have to have daily 3 - 4 times plus physiotherapy and go through postural drainage that is basically laying head down while being percussed (hands clapping on to the rib cage - usually by parents, self and physiotherapist, later Royal District Nurses and Domcare Health-aides) then cough up and spit out as much mucus as possible.
I discovered in about October 1994 that my transplanted lungs were also allergic to cigarette smoke and that cigarette smoke caused me to have asthma attacks.
I took steps to avoid smoke and it was in March 1995 that I realised that environmental tobacco smoke could cause severe life threatening asthma attacks.
A major problem I now have is with asthma attacks when I am exposed to cigarette smoke (even slight traces on people's clothing when my lungs are super-sensitised after an attack) and the subsequent chest infections that go with this aggravation.
I no longer walk alone because I am afraid of being on my own and exposed to cigarette smoke and having an asthma attack and not being able to get help from anyone - such as if I was in the parklands or in a deserted street.
My physical strength and ability to exercise has been compromised, though I can still do my cleaning, cooking and gardening. In the past I have also cycled for exercise.
At present I am wary of going to Conferences - because I am afraid that someone will start smoking. (As occurred at the Disability Conference in Sydney in 1995). I only go to social events that I know are 100% guaranteed smoke free. I only visit friends and relatives who are non-smokers living in smoke free homes.
THE INCIDENT AT MERLIN INTERNET ON THE 30TH JANUARY 1998
Merlin Internet (or Merlin Australia) is an Internet Service Provider with its office in Adelaide.
I had been a client of Merlin Internet since March 1997. I would have spent between $30 to $45 per month for Internet Access.
I was very careful about selecting an Internet Provider. I wanted one that had easy guaranteed smoke free access, guaranteed smoke free premises and a no smoking policy on the premises in respect of both staff and clients.
A person I befriended told me about Merlin Internet and said that they appeared to be smoke free. I clearly remember that before I joined up Merlin Internet in March 1997 I telephoned them beforehand - probably talked to a male person - the speaker only identified himself as "Merlin". I asked whether they were smoke free and he said unequivocally "yes".
I went into Merlin Internet's premises in April 1997 - to have my Computer fixed, I talked to one of the staff. I went on a lot about environmental tobacco smoke and how I could not tolerate it. He agreed with me and said that smoking was not good for your health and that Merlin Internet had a no smoking policy for their premises - which was shown by the non -smoking sign on their entrance door.
All of the times that I have attended at Merlin Internet they had a "no smoking" sign on the front door - the size of which is some six inches in length.
I did not notice whether Merlin Internet had a no smoking sign anywhere inside the premises - I simply did not look.
However, I did pay extra special attention to the "no smoking" sign on the front of the premises.
The reason I had gone into Merlin Internet on the 30th January 1998 was to pay an account for two months of Internet access and also to return a modem that I had brought from them for one of Intramedia Design's Apple Computers. The modem did not work and I had to return it.
Previously I would have gone to Merlin Internet's premises about 6 times over the period when I was a Merlin Internet customer. I would have gone in there on a regular basis (at least once every two months) to pay my Internet access account. I had never before encountered any one (staff or clients) smoking in the premises or in fact anywhere outside or around the building that I could see.
I recall the 30th January 1998. I was feeling very good and I had experienced a wonderfully productive day. I had been working since 6.00 am and I had ducked out of my office to run a few errands. I was driving my car and I had my friend with me.
The first time I went into the Merlin Internet premises was at about 4.15 pm. Naturally I did not suspect any environmental tobacco smoke. For some reason I instantly felt unwell. I was surprised as to how my chest began to hurt. I realised that I would have to wait a while and because of this and my increasing discomfort I returned to my car.
At about 4.55 p.m. I re-entered the Merlin Internet premises. My lungs immediately reacted violently with pain wheezing and sputum production. I happened to look at the hands of the man sitting behind the computer and saw that he had a lit cigarette in his hand. I ran out of the premises after saying two expletives in shock.
THE SYMPTOMS I EXPERIENCED AS A RESULT OF MY ASTHMA ATTACK ON THE 30TH JANUARY 1998.
When I entered the Merlin Internet premises for the first time
my lung capacity physically dropped. I lost air entry and did feel wheezy.
I did not suspect cigarette smoke because of the no smoking sign on the front
door and the fact that on previous visits no one had been smoking at the premises
I also did not see any one smoking, did not see any cigarette smoke, did not smell any cigarette smoke (due to a problem with my sinuses I do not have much of a sense of smell.)
The second time that I went into Merlin Internet I took some deep breaths as I had just ran from my car into the premises. I immediately began to lose air entry in a drastic way. I looked and saw that the man behind the desk, sitting in front of the computer was smoking. I then ran back the whole 5 metres to my car.
When I say that "I lose air entry" I mean that I just cannot get air entry into or out of my lungs - this is very uncomfortable, painful and most alarming in that I have to fight any possibility of rising panic and anxiety.
Outside, in my car, I had six puffs of Ventolin. I did not even have enough air entry to suck in the Ventolin properly. I then got my friend to drive me to a local GP I recall that the GP was quite shocked at my condition. She really did not know what to do. She put me on oxygen with Ventolin. Then she wrote a letter to the Royal Adelaide Hospital Emergency Department, and marked it urgent.
I was quite scared going to the Emergency Department at the Royal Adelaide Hospital because I felt that I could come across more cigarette smoke at the entrance, (people smoking outside the building).
After the oxygen and Ventolin my symptoms were still there - I still could not get air in and was very wheezy.
My friend drove me from the GP to the Royal Adelaide Hospital - right up to the entry to Emergency. I then held my breath and staggered in to Emergency.
PSYCHOLOGICAL SYMPTOMS AS AT 12 FEBRUARY 1999
· I feel distressed, depressed and I grieve for the loss of my present "good lungs" in that I went through so much pain and now my lungs are seriously compromised. I feel depressed, sad, hopeless at having to lose my full independence which I have had since 1989 (at age 27) when I moved to Adelaide) and move back to Melbourne where I can rely on my parents to help me with my daily living and also, most importantly, to be near my treating specialists i.e. the Doctors at the Alfred Hospital Prahran who did my double lung transplant. My independence meant the world to me.
· I get really anxious when I get out to public places because I am afraid that someone will be smoking or have smoked even in areas declared smoke free.
· It has come to this that I now avoid doing a lot of things that I could do (eg cycling; walking, going out) because I am scared of having an asthma attack and getting sick with all the consequences, hassles, pain, hospital admissions and the like - and also the reality of becoming closer to dying with each attack (Will I get treatment in time? Will the treatment work? Will there be some one nearby to help me?)
· During an asthma attack I have to work quite hard at calming myself down, relaxing myself - because if I do not do this then I will really die. My Ventolin will not work and my airways will continue to close up.
· During an asthma attack I experience extreme shortness of breath and choking, a squeezing sensation in my chest and throat, pain in my chest. I may have to hold on to something to stop from falling over as I struggle to breathe.
· When I go into hospital I feel that I am losing control of my body and my life.
· I am also extremely afraid that when I seek medical assistance or help from a Doctor at the Royal Adelaide Hospital that they will not know what to do and make my asthma and my lungs worse.
· I have watched many young children and adults suffering and dying early, with parental smoke being a major factor (my nieces and nephews with moderate to severe asthma, who have a smoke free home, experience services difficulties from accidental exposures).
· A few years ago, I was in the Adelaide Children's Hospital during the process of death of a 14-year-old girl. At her age I weighed less and was on drugs to keep my heartbeat steady. My prognosis was very poor. Unlike her I had a smoke free home. Her parents said that they stepped smoking in the house after meeting me. Sadly too late for their daughter.
· I have had nightmares a few times a month. I am going somewhere in a public place - cannot get away from people who are smoking, these are people I do not know. I struggle to breathe - but I do not die, I always wake up.
· With my sleeping when it's good then I usually wake up about 2.00 am. This probably connects to the times that I had Cystic Fibrosis in my lungs and the Royal District Nursing Service would come around at 2.00 am and 3.00 pm and give me chest physiotherapy. When my chest is bad I wake up constantly. I have to clear my chest of mucus day and night when it is really productive - I rarely produced any sputum with my new lungs. But since the exposure at Merlin Internet, which resulted in my first course of intravenous antibiotics since my transplant, I have a chronic infection and need regular physiotherapy.
Sue Meeuwissen -1999