31 Days of May the CF Way - Day 28 In Q and A part 1

1.What is the course of life for a typical CF person, if there be such a thing?

The sticky mucus in cf lungs is a breeding ground for bacteria, which causes infection, which causes irreversible scarring. The scarring becomes worse and worse and eventually the lungs don't work well enough to support life. So, I guess there is a gradual decrease in lung function. How quickly this happens varies from person to person, even with siblings.

2.You mentioned that there's a particularly nasty bacteria that usually makes an appearance, and current life expectancy is somewhere around 30 - are there any/many restrictions within their lives (eg can't work the lungs too hard with intense sport), apart from carefully monitoring their diet/enzymes, taking loads of pills, and more frequent hospital admissions?

The particularly nasty bacteria is pseudomonas. Which seems to damage the lungs quite significantly. I don't believe that there are many restrictions, until their lungs function becomes lower and they require oxygen.

3.Are certain sports recommended for children with CF?

Recently I was speaking with a nurse who had been working with children with CF for twenty years what the biggest difference is now to when she started. She said the drugs that were being/had been developed, but also the exercise that was being encouraged now that hadn't been in the past. We have been specifically encourage to get El swimming (which we did over summer) and jumping on the trampoline (we have a mini tramp), but anything that gets their heart pumping and their lungs working to move that sticy gunk is fantastic.

4.What is the average life expectancy for someone with CF?

Life expectancy in Australia for people with CF is now 35 years. I'm not really sure if this is an average figure or not, but I believe the average is around mid 30's.

Well, that's it for this post. If you have any more questions or I haven't answered these questions well enough, let me know so that I can put it in my next post.

31 Days of May the CF Way - Day 27 In Memory

In Memory of

Conner Reed Jones April 14, 2003 to June 24, 2010.

Jessica Wales Jessica died on 12 January, 2010, aged 20.

Eva Markvoort March 31, 1984 – March 27, 2010.

Alicai R 12/12/2000 - 17/5/2011

“One person every day still dies from cystic fibrosis."

Margarete Cassalina of Milton, N.Y.,

31 Days of May the CF Way - Day 26 A Legacy Like No Other

It was amazing that yesterday when I was reading the topic for this post I couldn't decide which amazing CF warrior to write this post about and then I read a blog which I have been following for quite a while and what she wrote truly fit into the topic. This mother lost her young boy to CF almost a year ago. If you would like to read the whole post it is at http://notsobrightandshiny.blogspot.com/

But this is the part that is most relevant.


"I truly, cannot believe it’s been a year. I dream of him often, he still leaves lots of red out for us in the most unexpected places, and sends remarkable people into our lives almost daily. it amazes me how much his story has impacted others, and how far across the world his LOVE has reached. I love to google his name and see it mentioned on many pages. it’s really what life’s all about. leaving a legacy."

Conner Reed Jones April 14, 2003- June 24, 2010.


If you want to read about other amazing people with CF look up the following: Eva Markvoort,and Burke P. Bear ( I would like to get one of these for El when she is older).


Please get Questions in, if you have them as its day 29 for questions.

31 Days of May the CF Way - Day 25 My Biggest Fear

I think my biggest fear in regards to CF, is having to watch my child suffer. Not just the numerous needles and medicines, but potentially watching her lungs fail her, watching her struggle to breathe. I hope it never comes to that, but the odds are not very good. It is something I try not to think about. But when I do it makes me feel ill. That is my biggest fear.

Sorry for the depressing post, but that is the truth. Please don't forget to send me any questions for my day 30 post.

31 Days of May the CF Way - Day 24 My Saviour

I know its June, but I had an inspection and had to spend my spare time cleaning! So I am starting to catch up.

Jesus is my saviour! A really short one, easy to write. I thought I'd include a Bible verse that has been my favourite for a while.

"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:33

31 Days of May the CF Way - Day 23 Hygiene

Hygiene is quite important, all the time for any of us, but I am a little more careful since we have someone with CF in our home. We try to limit El's exposure to the bugs that could cause damage to her lungs. Which is quite difficult as they live everywhere!

We do not visit or have playdates with anyone who has a cold (or whose family member has a cold), or let them visit us!

If anyone in our house has a cold they stay away from B, quite difficult really (Especially when its me!). Tissues are meant to be thrown away and hands washed after coughing and sneezing. All really basic hygiene, just more emphasis on it in our home!

When we are out, I always carry hand sanitizer which we use before eating/drinking and when leaving places (like the library or shops).

When we are in hospital for a clinic visit or admission I turn into monster Mum! We do not play with toys in the waiting area, or playgrounds. We wash our hands when we get to our room and every visitor is told to wash their hands before entering! I also don't really go near the other patients in our room, keeping our curtains closed as much as the nurses will let us! Its a good thing too, as a fellow patient was changed to infectious, after sneezing, coughing and whatever for three days before his culture came back (Ewwww!).

So please don't visit us, when you are germy and when you do visit us, wash your hands!!

31 Days of May the CF Way - Day 27 My Wish For CF!

OK so I skipped a few days but my plan is to catch up another day!!

Today is 65 Roses day, which I have explained in a previous post. I meant to write about a wish I have for CF and I'm not sure what to write. That I wish I will wake up fand find this has just been a nightmare? So I guess what a lot of us wish for is a cure, make cf stand for cure found not cystic fibrosis. And there has been some great progress in drug studies this year (for genotypes that are not the same as El!)

But my biggest wish is that Cystic Fibrosis will make us stronger as a family and not tear us apart. I know the journey will not be easy, but with lots of prayers I am sure we will get through this.

Oh and for good measure check out this short video!

http://www.youtube.com/watch?v=ng_Cfub6VhM

And for my last post of the month I would like to do a question and answer blog so please send me an email with some questions or it won't work!!