FIVE FEET APART DISCUSSION QUESTIONS
Here are some frequently asked questions and discussion of the issues raised in 5 Feet Apart, a new film about young adults living with cystic fibrosis (CF).
Why the 6 Feet Apart Rule?
For people with CF, being close to others with the disease puts them at greater risk of getting and spreading dangerous germs and bacteria such as B. cepacia. In the US they have a 6 feet apart rule but in Australia we recommend 4 metres or 13 feet – about the length of a small car. This is an important Infection Prevention & Control (IPC) measure.
What Other Infection Prevention Control Measures Do We Use In Australia?
Good hand hygiene with access to liquid soap, hand drying facilities and alcohol-based hand gel is the single most important IPC measure. This will reduce the risk of cross infection between people with CF as well as the risk of spreading other infections, such as colds and flus.
- Not sharing personal equipment such as drink bottles, nebulisers and other respiratory equipment
- Cleaning common surfaces such as door handles and tables
- Wearing gowns, gloves and masks when appropriate
How Can I Stay Connected?
IPC prevents people with CF from being together and this can lead to feelings of isolation and loneliness. Facebook and other social media platforms as well as other online resources can help people with CF to connect.
Cystic Fibrosis WA (CFWA) have produced a range of online resources that address some of the issues faced by young people in the CF community. CF Talk includes a series of videos created for young people to help navigate some of the trickier aspects of living with CF. Our real-life experts discuss how they have dealt with school, relationships, work and balancing their life with CF treatment. CF Talk Video Series
Our new CF Talk Online magazine for young people speaks directly to our younger cohort providing a forum to share relevant age appropriate information and promote further discussion. CF Talk Online Magazine for young people with CF. CF Talk
CFWA facilitate a range of support events for family members and this is a great way to stay connected and feel supported. Annual events include Parents’ Retreat, Ladies High Tea, Sibling Camp and Parents and Carers Dinner. CFWA Member Events
How Do I Deal With Emotional Wellness?
It is well known that people dealing with a chronic health condition like CF have extra emotional challenges and can experience more mental health issues that can impact physical health. Mental health issues are exacerbated at times of illness, hospitalisation or through medical procedures. Carers and parents are also greatly impacted, experiencing high levels of stress and anxiety particularly at these times. Heightened anxiety is normal, however if these feelings persist and you feel you are not not coping it is important to share with a friend or seek professional support.
The following suggestions for staying emotionally well are taken from a fact sheet from CFF titled Depression, Anxiety and Cystic Fibrosis.
If you have mild symptoms or recognize the beginning signs of depression, anxiety or both, talk to your CF care team. They can work with you to maintain your emotional health. The following are ways that you can prevent problems with depression or anxiety from getting worse and limit their impact on your life or that of your loved ones:
- Talk with somebody, preferably in person. Many people with depression withdraw and isolate themselves from other people.
- Spend time with people who lift your spirits.
- Avoid alcohol or drugs.
- Continue your CF treatment plan.
- Practice good sleep habits. Do your best to get enough sleep. Go to bed and wake up on a consistent schedule. Avoid staying in bed when you are not sleeping.
- Get outside in nature for 30 minutes every day.
- Make time for things you enjoy.
- Be physically active. Exercise can help reduce stress.
- Practice relaxation techniques.
- Avoid caffeine and cigarettes, which can increase anxiety levels.
- Join a support group like the CF Adults Facebook group. Talking about your problems with people who have the same experience can help you feel less alone. CFWA Adult Facebook Group
Why Can’t People with B.cepacia Have a Lung Transplant?
Advances in CF treatment have resulted in people living longer healthier lives, however some people will still require an organ transplant to further prolong their lives. Most commonly this will be lung transplantation but may also be the liver or pancreas. Lung transplant surgery is an end-stage treatment that replaces both diseased lungs with healthy donor lungs.
Transplant centres around the world have different policies about what they consider to be contraindications to transplant. Although some may not accept people with B.cepacia, others may and people with B.cepacia have been successfully transplanted in the past. With advances in treatment these contraindications change over time.
What is the Life Expectancy After Lung Transplant?
In Australia the average life expectancy after lung transplant is about 7 years, which is 2 years above the global average. This figure includes people with all conditions who receive a lung transplant. People with CF tend to have a longer survival post-transplant as they are younger and generally healthier.
What is a Tension Pneumothorax?
A tension pneumothorax is a condition that can be caused by weakening of the lung wall in people with advanced lung disease. Air leaks into the space between the lung and the chest wall, pushing on the lung underneath and causing it to collapse. In some cases, the air continues to leak into the chest cavity and results in compression of surrounding chest structures, including vessels that return blood to the heart. It is a very rare complication in CF and can be treated with a chest tube to let the air out. Unlike the movie, symptoms would have been noticed and acted upon immediately and in most cases prevent fatal outcome.
Why Don’t We Use the Vest in Australia?
Airway Clearance Techniques (ACTs) are an essential part of management for people with CF. Performing regular airway clearance helps loosen the thick sticky mucus from the airways so it can be cleared more easily. Airway clearance is different for people with CF all over the world. In Australia we don’t recommend using the vest as research has not found it to be as effective as other methods of airway clearance.
How do I Talk to My Child with CF About This Movie?
Your child with CF, and their siblings and friends, may have questions about this movie. Children pick up on the emotions of their parents, so it is important to make sure you are okay. Perhaps share your feelings with some friends to “test the waters” as to how you are feeling or speak to someone at your clinic or CFWA.
Read the Fact Sheets so that you can answer your child’s questions in a knowledgeable way, emphasising that the movie has dramatised aspects of CF for the sake of a good story. Every person with CF has their own unique journey and each experience will be different.
If you would like to talk to someone or would like more information on any of the topics mentioned above please contact us at email@example.com or on 08 6457 7333.