Cystic Fibrosis FAQ

Most of you know about Coughing the Distance the upcoming documentary, but what do you know about Cystic Fibrosis (CF)? I have CF and I rode from Paris to Istanbul for CF Research and Awareness. So what exactly is Cystic Fibrosis? Read on!


Q: What is Cystic Fibrosis?
A: Cystic Fibrosis (CF) is the most common life threatening, recessive genetic condition affecting Australian children.

Q: How does it affect people?
A: CF affects primarily the lungs and digestive system, however with improved medication and treatment life expectancy has been extended considerably.

Q: Who gets CF?
A: CF is an inherited condition. For a child to be born with CF both parents must be genetic carriers for CF. They do not have to have CF themselves.

Q: How common is CF?
A: Approximately one in every 2500 babies will be born with CF. One born every four days.

Q: How many young people have CF?
A: Approximately 3000 and there are 1 million carriers in Australia.

Q: How is CF diagnosed?
A: In Australia, all babies are screened at birth for CF. A blood spot test is applied and if this test proves to be positive a sweat test will be done to measure the amount of salt in the sweat and it is with this test that a final diagnosis is made.

Q: What is their life expectancy?
A: The average age expectancy is around the mid 30s, but not so long ago that was teenage years or younger. The great improvement has been brought about by research.

Q: What are the symptoms of CF?
A: People with CF may have the following symptoms:

• Persistent cough, particularly with physical effort.
• Some difficulty in
breathing or wheezing with effort.
• Tiredness, lethargy or an impaired
exercise ability.
• Frequent visits to the toilet.
• Salt loss in hot
weather which may produce weakness.
• Poor appetite.

Q: Is there a cure for CF?
A: Cystic Fibrosis is not curable at this time. However, with today’s improved treatment most people with Cystic Fibrosis are able to lead reasonably normal and productive lives. A great amount of time, energy and money is being directed towards finding new and improved ways of treating CF and finally finding a cure.

Q: Is CF contagious?
A: CF is not contagious. Coughing is a frequent symptom of CF. Some people are afraid they may catch it, but CF is an inherited condition which is present at birth. You cannot “catch” CF and you cannot give it to anyone else.

Q: How is it treated?
A: Intense daily chest physiotherapy to move mucus in the lungs. 40 enzyme replacement tablets each day to aid digestion.

Q: Why have things improved?
A: Mainly due to research and better knowledge and management of the condition.

Q: Does the CF National Organisation receive Government funding?
A: No – The States receive funding to support the CF Community but no money for research.

Q: Is there a cure?
A: No – but it can be found.

Q: Why “65 Roses” Day?
A: “65 Roses” is a small child’s effort to pronounce his sister’s condition. As he couldn’t pronounce Cystic Fibrosis, he called the condition “65 Roses”.

Susie on WIN

The inside story

Was very special to be inside the studio at WIN TV and seeing Susie life! One of the highlights was tasting the **braised** Moroccan mini roast that Victoria Hansen prepared in the studio!

Ross Symonds my favourite newsreader from my past was there as well. Of course I did not recognise him :( My memory is like a seive!

Wake Up My Little Susie

Yes, it will happen tomorrow! Tune in between 10am and 11am for Susie!

Canberra trip

Lucas is filming me here. I am talking to the wooden cat! We have hours and hours of narrating and interviewing to do. We interviewed David one day, I met one of our sponsors today, we visited the hospital for a full lung function test - took hours and hours! I visited government departments to get tax concessions for our funding - to no avail. Life in the fast lane! Not getting around to my friends :( or families. Work to be done!

I should be on TV on WIN next Friday between 10am and 11am! I will try and tape it somehow and put it on the blog!

Walter----

Susie

WIN TV, will speak to me next week! I will see Susie at the Wollongogn studio next wednesday when they record for the week ahead. Yeah, watch out Susie, here I come. Keep an eye on this website for more info in the next week: www.wintv.com.au/susie/

All the other TV shows that we have approached have not responded. Sunrise is coming to Hobart in the very near future, but despite the dozens of approaches we made we have not heard from them. Their loss!

Thank you CF Tasmania!

CF Tasmania has just advised me that a $3000 grant has been approved and a cheque was mailed to me promptly! This is great news as I am incurring lots of costs lately. I am due to appear on WIN TV which requires travel at my own cost to Wollongong, I need to go to Canberra to film and discuss the documentary with Lucas. We have thousands of dollars to pay for professional services incurred with our project...

We hope to soon find an Australian TV network for the documentary and with a bit of luck obtain a pre-sale fee. It will get us out of deep water!

Thank you CF Tasmania! It could not have come at a better time!

CF Lifestyle

If you have Cystic Fibrosis like I do then you are bound to take a lot of medicine. Here is a list of medicine and other things that I take daily:

• Pulmozyne - every evening before bed with a nebuliser pump
• Cephalexin - antibiotic that reduces lung infections - I am usually on antibiotics of sorts
  
• Augmentin Duoforte - another antibiotic that I alternate with others
  
• Creon Forte - pancreatic enzyme I take with meals
• Cotazym-S Forte - pancreatic enzyme I take with small snacks
• Ventolin Inhaler - twice a day a couple of puffs
• Seretide - a long term broncho dilator (steroidal)
  
• Fluimicil - a mucolytic I have to get from overseas which I take prior to doing exercise (no subsidies for this at all!)
• Kefir - a yogurt kind bacteria I culture myself and drink which effectively stops my stomach from aching.
• Hypertonic Saline - every morning with a nebuliser pump to do my lung clearance techniques with
  
• Lantus injections - every night to keep my sugar levels low
  
• ABDeck Vitamins - specialised prescribed vitamin supplement or CF
  
• Injecting pen - for the insulin
  
• Pen Needles - every night a new needle of course
  
• Colloidal Silver - an alternative medicine that helps me - prior to 1938, colloidal silver was widely used by physicians as a mainstream antibiotic.
• Vitamin Supplements - a draw full of various supplements to help with metabolism, breathing, immune function, bone health (people with CF typically have osteoporosis as well). - none are subsidised
• Ensure hospital strength - a protein meal supplement I mix in with my kefir (not subsidised either)
  
• FOOD - I have to eat lots of healthy food. People with CF have double the appetite and double the need for good nutrition. This is not a cheap diet.
• SPORT - Anything to do with sport is expensive. I must do sport regularly and fot this I need gear. Without the right gear you get injuries and do not enjoy it (making it harder to convince myself to go out and do it!).

Living my life does revolve around staying healthy and taking the right medicine at the right time. None of this is easy as you understand, but certainly very doable. Everything comes naturally, I know what I need when I need it. Something you get with experience!

Here is a list of sports items I own and regularly use to get me to go out and exercise my lungs. I can do one or two days at most per week without decent exercise or else my lungs congest. Most of my equipment is of minimum amateur standard, nothing is extravagant. I use a basic heart rate monitor when I run to encourage me to stay above 120 beats per minute, I run on good running shoes, I have a great bicycle so I can ride and change gears smoothly and easily, stop when I need to and be safe on the road with. I have a bike computer to encourage me to ride at a minimum of 20 km/hr (if I am fit and well). I have a kayak and paddles, a car with a roof rack... I have all the toys. All comes at a cost, and all are slowly accumulated. I have a mobile phone in case of emergency. I own a good back back, hiking tent, sleeping bag and related gear. I have a great collection of sports wear to hike, run and cycle in.

When Katherine comes home from work she will ask me what I did for work today, meaning which sport I did for an hour or more. My job is to stay healthy, which means I must eat lots and exercise lots! This is an expensive lifestyle that many would consider a luxury. I must say I do enjoy it and feel privileged to HAVE TO DO IT. But this costs money... Participating in fun-runs or other events costs money, running in the Hash House Harriers costs money... everything costs money. Volunteering for things in the community, Lions Club, Lillico Penguins, Bushcare,... it all requires transport to and from and often other related costs - like needing a second car to begin with (and which we have!).

Andrew Denton?

Several people have volunteered me as a guest for Andrew Denton! If you like to make a comment (which will improve my chances of getting on air with Denton!) go here: http://www2b.abc.net.au/guestbookcentral/list.asp?guestbookID=29 and look for me. Leave a comment. Turns out I have been suggested by others too, just do a 'search suggestions' and look for name WALTER.

SUPPORT IS NEEDED

We did not manage to get the LJ Hooker support we hoped for as LJ Hooker has a strict contract with CF Australia dictating where all their donations go to. That is OK, it still goes to Cystic Fibrosis! We are continuing with our fund raising.

But WE NOW NEED YOU! We need you to pre-purchase the books and the DVD to help us fund the printing and production! Go to www.coughingthedistance.com now and help us out!!

Remember that profits of the movie will go to CF research and profits of the books to go to CF Associations! And the more we can print the more we can send to CF clinics to give inspiration where it is needed!

Walter----

Draft on Internet

We are making progress! Negotiations with LJ Hooker Realestate are progressing, the proposal for funding has progressed from State to National Level!

I am approaching a Tasmanian research organisation to see if they like to have the rights to the documentary so that they can professionally distribute it and get the profits from it. This will be a complicated move which I think will benefit the CF population in the world as a large university affiliated research organisation in whose interest it is to spark interest and attention to CF is more able to distribute the documentary on a world wide level. They will be better able to distribute the documentary and make more profits from it than I would be able to do on my own, especially as they have teams of professionals and more money to back the project. As for the profits, the intention has always been to donate all profits to CF Research, and what better way then to pass the rights to a Research Institute! It would also give the documentary more authority if it came from a respectable research institute. Of course this is still a long shot, but you never know how things pan out!

And the book is now in third draft. We are closer to having it finished now. The book has been edited and divided into chapters by Dace Shugg, editor of the CF Worldwide Newsletter. Currently we are getting three acomplished 'readers' to test-read it.

In the mean time I have secretly 'published' this draft copy on Lulu: http://www.lulu.com/content/2084690 from where it is downloadable for US$5 and you could even order the book in printed form - mailing is very reasonable, under $10. It is not a final edition, it has not got an ISBN number assigned, but technically it is available to people who click the above link. Ofcourse the book in draft form is not publically available or searchable, and can only be located with the above private link until we have it completely finished!

Don't forget to watch the three minute documentary preview at http://www.coughingthedistance.com/!

Second draft finished

Getting somewhere with the book! Slow process.
Random quotes from book here: www.coughingthedistance.com
Lucas the film director coming over this week! Shooting in Tasmania this week. The Adult CF clinic and local habitat of Cindy and Troy, and wife Katherine too!

Walter---

The Mucous Monster

Here is the first art received from the talented artist who is doing the Walter and the Mucous Monster book!

Documentary Australia

Yes, we are approved by Documentary Australia!
See here: www.documentaryaustralia.com.au

Lucas is making progress

Visiting Lucas in Canberra was a highlight of my Canberra trip. We saw the draft copy of the 'Teaser'! Soon you will see it here!
Here he is working on some footage. There is a huge amount of time involved in sifting through 50+ hours of footage and assembling a movie!

Progress...

Currently in Canberra reading and correcting the first draft of the book.
Katherine is doing her kiddies book and Glenno the illustrator in Sydney is starting to sketch illustrations!

A proposal for funding is in the mill where I request real-estate franchise LJ Hooker to pre-purchase the Documentary and the books for their franchises. I hope it bears fruit, we sure need some funding to keep the good people going - the illustrator doing the children's art and Lucas in Canberra to name but a few.

We almost have a 2+ minute teaser, I have the draft for it already. We were endorsed by Documentary Australia as well thanks to a beautiful presentation made by Lucas. When that is finalised I will post a link here.
We purchased another 2 Terrabyte drive for Lucas and are still receiving funding from different areas to keep things rolling! We are on track. Awesome.

In Focus Again

The Royal Hobart Hospital got me in their Infocus Newsletter again! Nice!

Pre-sales of Coughing the Distance Packs!

Yes, we are progressing!
The documentary is still scheduled for completion in April. We have quotes for DVD pressing and book printing (yes, also on track with that!), and now need funding to actually print/press the packs.

An official launch has been decided on for August at the Australia New Zealand Cystic Fibrosis Nurses Conference which is held in Hobart this year! Terry Stewart, CEO of CF Australia is giving the keynote speech for the conference, and will hopefully give it a plug! If in April we find a NAtional TV station to air the documentary we can most likely arrange for the TV broadcast to coincide with it in August.

To get the books and DVDs ready for sale we need funding! Help! Why not pre-purchase the pack consisting of the children's book, the adult book and the DVD. Individual sales also possible. It will be shipped to you FREE OF CHARGE in August!

Check out the new website we designed for it: www.coughingthedistance.com and invest in Cystic Fibrosis today for a brighter future tomorrow!

Donations still accepted!

I am pleased to advise that this last month of 2007 another $1200 has been donated to help us produce 'Coughing the Distance' - the inspirational documentary covering our ride from Paris to Istanbul!

In particular I like to thank the Southern Cross Club from Canberra for their kind donation!

The book is making progress as well, albeit slowly. Printing the book and producing the DVD is planned for April when we hope to have it all together! The book and DVD package is destined for CF clinics and hospitals around the world to provide a small ray of sunshine to people with CF. The educational and inspirational Coughing the Distance combo (book and DVD) will make a difference to those affected by CF who have only read and heard about the clinical prospect of living with CF.

Packaged with the combo will be information on organ donations, as all people with CF are likely to end up on the lung transplant register.

If you are able to help, or know of people who can, we still need to arrange funding for this venture. We hope to find a corporate sponsor or philanthropist who is willing to invest in the cause!

Youtube

I found this video. A typical family that would love to see a documentary on a 42 year old with CF!