Have you studied beyond school? If so, how did you balance study, personal and CF responsibilities?
I begun full time work soon after completing senior. After a few job changes I decided it was time to complete some part-time study while working full-time. The combination of full-time work, part-time study, hospital admissions and completing my treatment regime was in the end too much to handle, and I was unable to complete the university course. When I did become to unwell to work full-time I managed to complete a web design course online and continue to learn and work in this field now I have had a transplant.
Do you work and if so, how many hours per week?
I am currently working from home as a freelance web-designer. My hours vary depending on work loads and health.
I have worked previously for Queensland Health in numerous positions both full-time (18 years) and part-time (2 years).
I also worked outdoors on a golf course (3 years) which I found really good for my health. The position at the golf course was not to taxing but I was always moving (walking). This walking, combined with not being in a office environment and being exposed to less viruses, helped stabilise my health at the time.
When did you tell your employers about your CF?
When I applied for a position with the Queensland Government I was required to complete an application package and it included a section on medical history. My first interview for a government position was with Queensland Health and I discussed the implications of Cystic Fibrosis with the interview panel.
Once I begun to apply for other positions within Queensland Health I always indicated at interview that I had Cystic Fibrosis.
The golf course position I talked about earlier was a casual position and they also were very understanding when I required time off. Once I had completed my treatment I would be reinstated on the roster.
How did you and your employee address the need for time off for treatment?
Managers/Directors would work with me when I required time off for treatment. I was offered work from home when completing home treatment and variable/flexible working hours so I could complete home treatments. When I was doing home treatment i would work 5 hour days and take the rest of the required hours for the week as sick leave or leave without pay.
When I did require hospital admissions I would use any available sick leave or take leave without pay.
I only ever had one issues with a manager when I required time off within Queensland Health and that required further negotiations and a suitable outcome was reached.
The golf course position I talked about earlier was a casual position and they also were very understanding when I required time off. Once I had completed my treatment, I would be reinstated on the roster.
Have you got any tips for the young CFs looking for a job?
I was always honest and up front about my health condition and only once had an issue getting time off for sick leave.
I would not try and work full-time and study part-time.
If your health allows it, work in a position that includes some physical activity. You will need to discuss this issue with your medical teams. But I found being active at work helped maintain my breathing tests and resulted in less hospital admissions.
If you've had a transplant - what is one thing you wish you were told before transplant that could help you nowadays?
Not sure I can think of anything I wish I was told. However, I asked a lot of questions before transplant. I gathered information from the Cystic Fibrosis medical/allied health teams and transplant medical teams.
I also found talking to patients who had already had a transplant a great benefit. I would use this information and discuss with medical staff.
Try and maintain your strength as much as possible before transplant. I concentrated on leg strength only at the gym and walking. It was not easy walking and I would have to constantly stop to catch my breath, but pushing through really helped my recovery post transplant.
What would the older you like to tell the younger you?
Surround yourself with positive people and aim high. Cystic Fibrosis has no boundaries.
What are few things you would love to be able to do in the future (i.e. climb Mt. Everest, meet Ellen, learn to juggle)?
Watch my family grow and cherish family memories.
Find that perfect work life balance.
As I have had a transplant I would love to try and complete things that were not possible before transplant, the list is very long and continues to grow daily.