Operation Fatten Up

Maintaining a healthy weight can be a struggle for people with CF for a combination of reasons. Most people with CF are pancreatic insufficient, which means their body does not break down fats and protein. These people need to take digestive enzymes every time they eat. A high calorie diet is needed to counteract this mal-absorption. It's also needed as people with CF are working harder to breath than you or I. Simply living, burns more calories than average. And during periods of sickness, weight is easily lost., when it is needed the most.
There is a direct link between having a high BMI and being healthier overall. It wasn't until people with CF were told to have a high calorie diet, in conjunction with enzymes being used, that the a age life expectancy increased past teenage years.
All of this information puts stress on parents feeding their kids with CF. Suddenly "healthy" takes in a new meaning. In the early days, your baby is monitored, charted, weighed, measured so closely, you feel like you are raising a prize turkey.
During our visits with our dietician, I was interrogated with hundreds of questions. How much of this? How much salt? How much do you add to this? How much milk? How many poos? What colour/consistency? How long do you spend eating?"
If the dot on the graph drops below a certain point, then there are things to try. Polyjoule, pediasure, formula, appetite stimulants, Ensure, feeding tube. It's like a big black cloud hanging over you, waiting to rain at any time.

And then like everything else on my CF journey so far, I stop listening enough to do my own research and start thinking for myself. There is a whole world of good food out there. Why can't I use it? To be fair, our dieticians have always told us that a CF diet is not a free pass to junk food. But in my experience, healthy alternatives have not been widely suggested.

So the whole point of this entry is to share the following link with you. I started to post it on Team Ruby but waffled on do much, it passed "status length". The post is written by Jo at Quirky Cooking and is a wealth of knowledge about gaining weight in a healthy way. Because, to be brutally honest (as I always am), people with CF never used to have to worry about their health in old age. Getting to old age was beating the odds in itself. Now, people with CF are living past their 30's and overall health is so so important. That's hard to achieve if a high fat diet is a result of empty calories from McDs and KFC.
So if you want to get a bit if an idea on what "real" food is out there, read through this link:
Nourishing & Strengthening Foods . . . for those who are Underweight or Recovering from Illnesses

Oh, and did I mention I'm getting a Thermomix? It's my new weapon in my war against CF!

Be a Good Friend

We get told some pretty scary things about CF from our kids doctors. Lots of it won't affect you. You don't have to worry about how to help our kids avoid diabetes or osteoporosis, you don't have to measure up the pros and cons of sending our kids to swimming lessons, you don't have to make sure that physio is done properly. And we don't expect you to worry about all of those things. That's our responsibility, our priveledge.


One of the scary things we are told about, is how a common cold, and other illnesses that are minor to most, can affect our child in the long term. What might be a day off school for your child, could very easily be a hospital admission for ours. A week of illness for your child could equal permanant lung damage for ours. Your child will feel better and be better. Our child may feel better, but all of these "little" illnesses shorten our childs life. That's just how it is.


Again, not your problem. Or is it? Being the mum of a CF child can be stressful and sometimes isolating. We don't want to lose friends, we need you more than ever. But we know more now, and our priorities may have changed slightly.


The good news is, it's easy for you to still be a good friend! There are just a few simple rules. These should help you out.

Accept that Cystic Fibrosis is serious.

One of the hardest things about CF is that our kids don't often look or act sick. And we don't really like reminding people. But the fact is, our kids have an incurable, life shortening, chronic illness that needs to be managed every single day. They are not the same as other children. We are not being cotton wool parents, we are keeping our children as healthy as we can for as long as we can.

Learn the basics.

We don't expect you to become an expert on the subject, but knowing the basics of the disease will help you understand why we are so anal about some things! In the smallest nutshell in the world: Cystic Fibrosis is a disease that causes the thickening of secretions in the bodies organs. This means that germs like to breed in the lungs, causing irreversible lung damage and eventually respiratory failure. If you would like to know more...ask! Your head won't get bitten off, I promise. Or you can check out the links at the bottom of the page. And no, they won't grow out of it.

Practice good hygeine.

Our kids don't need to be stuck in an antibacterial bubble. Practicing normal good hygeine will protect our kids. Wash your hands often, cover your mouth when you sneeze or cough. If you want to be a super good friend, let us know that you know that we want you to know! ie "oh give me a cuddle of your bubba! I can't wait to get my freshly washed hands on that gorgeous bundle of joy!" And of course...

Stay away if you are sick!

(or smell like smoke).

This is the most important point. Read the start of the page again. Your minor illness is our major fear. We won't get offended if you cancel a playdate, we won't hate you if you can't come to our dinner party. In fact, we will love you even more if you avoid us when you or your kids aren't well. This is the part where you can help us with managing our child's illness. Please please please let us know if your child has been sick. You don't have to decide if we should stay away or not, we will make the call. But we need to be able to make an informed choice. The smoking part is self explainatory and common sense.

Don't turn us into the bad one.

These rules will never change. Our child will always be sick, you will always need to practice good hygeine, we will always want to know if you or your kids are sick. Please don't make us bring it up all the time. We would really really really appreciate it if you remembered these points. It's no fun telling people over and over to wash their hands or cover their mouths. It's frustrating and sometimes embarrassing, but we will do it if we have to. We hope our friendship is worth the trouble.

Kiss and cuddle our kids!

I hope I haven't scared you off. The rules aren't too tricky, and our kids (like all kids) need all the love and good times that they can get. Big cuddles are awesome, tickle time is hilarious, holding hands is precious. If you are well and washed, please don't treat our kids differently.


That's pretty much it! Our lives changed dramatically when we got this diagnosis. We try to keep things as normal as possible, but it's not always possible. Our friends and family are so important to us, our childs health more so. We need you, please be there for us.

Cystic Fibrosis Australia

Oli & Nush A short cartoon about CF.

31 Days of May - The Cystic Fibrosis Way!

This is a great idea that a fellow CF mum had to raise real awareness as to what goes on in a month of a CF family. We have chosen the month of May as it is international awareness month.

Everyday I am going to post something about Cystic Fibrosis  

Everyday you will find out something new about CF and how it affects our family and my child's life

Some topics won't be relevant to us...yet

We are one of many families who go through this, I will also be sharing their experiences with you

love and kisses to you all!

65 Roses Day

You have heard me go on before about what I believe is the lack of awareness about CF in Australia. It sometimes keeps me awake at night, probably more than it should.

Well, good timing for me, May is the official Cystic Fibrosis awareness month! Fri 27th May is 65 Roses Day 

My plan is to purge all of my awareness urges. I will focus on putting it out there for all to see. Hopefully once May is over, I can feel good about educating people about this disease, and I will be able to sleep better at night. 


And I am starting with you, my blog readers

So here are some things you can do

 Learn about this genetic disease and how it affects its sufferers. You can do this by checking out these links:

 Informative blog entries

Cystic Fibrosis Australia

If you have any questions at all about how CF affects our family, please leave a comment and I will tell you the answer, guts and all.

Use Facebook! Join Team Ruby so you can see what is going on and learn about CF and how it affects just one of its sufferers. 

Change your profile picture to a CF awareness picture (these can be found on the Team Ruby page). Write a status update as to why you are doing it. This may seem like a bit of a token effort, but it has been proven to be a very effective awareness tool. You will be helping spread the word.

Invite your friends to join Team Ruby

You could sell 65 ROSES DAY MERCHANDISE. See if your employer will buy one for your place of work. Hint that it would be a great tax deduction! Volunteer to sell them at train stations. Check out the 65 Roses website for more info.

Share Share Share

Share links, pictures, CF pages. 

Sharing is caring, and I know that you all care!

I am sitting here surfing the net (instead of cleaning the saucepan cupboard) looking at CF stuff. The fundraising and awareness part of CF I mean. And I am getting angrier and angrier and ANGRIER.

It's pretty poor really, the CF website is out of date by about a year, the links in it are also out of date (ie Great Strides info) and really, there doesn't seem to be much going on.

CF families, are we living in a CF bubble where only our friend know about this disease? This is not some weird quirky thing that only some people get!!! It seems that if you don't know someone with CF, then it doesn't exist!

I have only been in this CF bubble for 8 months. I had no idea about it a day before that. Why not? I should have. Every one should!

Everyone should know that one in 25 people is a CARRIER for this DISEASE. Everyone should know that one baby every 4 DAYS will be BORN with this DISEASE. Everyone should know that TRANSPLANT and DEATH before turning 37 is not a possibility, but is practically a STATISTIC! 

Excuse me, but where are that ads on TV? Anyone ever remember seeing one? There is a beautiful one for MS out at the moment. It breaks my heart, I want to give them my money. The autism one also gets me every time. Kids cancer awareness...well we all know how successful they are.

CF kids look healthy, BUT THEY ARE NOT!

65k 4  65 roses raised a LOT of money. I thought it was a starting point but it looks like the high point.

So I am angry. And I will continue to be angry until there is more done for our kids. I will do it myself if I fucking have to.

Now I'm pressing publish before I calm down. 

 

5th April
OK, so I have calmed down now and thought I should clear some things up before I get myself booted out of the CF community!   And also to correct my spelling mistakes. I just get frustrated and although Ruby is healthy at them moment, I have a real sense of urgency to get more support. I get frustrated when things aren't up to date eg I wanted info on buying an Entertainment Book as I know that is a good fundraiser for CFA. The webpage has not been updated since 2009, even though they are selling books for 10/11. This is just one fussy example. There are lots of others. 
There are many successful fundraisers that are organised by the CFA, I will do a separate blog entry on what is coming up.
And then there are the amazing parents and community members who organise their own fundraisers. People organising events in their own time to raise thousands and thousands of dollars.  65k for 65 Roses is a great example, raising around $140,000. I honestly though that this was the norm, but it is not.

So I'm sorry if I offended anyone. I know for a fact that the CF community is a strong, loving, supporting community who want what's best for the people and families living with CF in Australia. I know that the people working for CF Australia work really hard and are 100% committed. I know I sound like a new comer who doesn't know what she is on about. I just want more.

I want to help. 

Photo Friday

Isn't this a powerful photo? I love everything about it. I love the pose, the colour, her expression. I love that it is a real photo, documenting someones real story. The girl in the picture is Miranda Hutson. She is 22 years old and received a double lung transplant due to her Cystic Fibrosis in Jan 2010.  The hospital tags are hers, the oxygen tank was a part of her life before the transplant. I don't see the picture as being morbid or negative. I don't know why, but I just really love this photo.   Photographer: Curtis Almeter, who was also in hospital with Miranda.

So What If I Have Cystic Fibrosis, I'm Unstoppable!  is a Facebook page that Miranda has created. I love how the majority of the members are teenagers, and I sometimes stalk the page, watching them interact, and just be typical teenagers! It gives me great hope for Ruby.

Cute CF Cartoon

Well, maybe I should have just posted this instead of CF in a Nutshell!

Makes perfect sense and is great for kids and adults!

CF in a Nutshell

So, what is it? Here are some facts without getting too complicated and without having to read all the horror stories out there on the net:

• Cystic Fibrosis is the most common life threatening, recessive genetic condition affecting Australian children. Both parents must be a carrier, you can't "catch" CF.
• Around 10% of babies born with CF have "meconium ileus" - an obstruction in the intestines caused by thick, sticky baby poop. This requires surgery, which is what happened with Ruby.
• In people with CF, salt and water aren't transferred properly from the cells, causing the body to produce thick sticky mucus.
• It affects a number of organs in the body (especially the lungs and pancreas) by clogging them with the thick, sticky mucus. 
• The mucus is a breeding ground for bacteria. Repeated infections and blockages can cause irreversible lung damage and premature death.
• Mucus can also cause problems in the pancreas preventing the release of enzymes needed for the digestion of food, especially fats. Malnutrition can be a problem.  

So what do we do for Ruby?

• Daily physio where we try to "knock the snot" out of her, is how I describe it.
• She is on antibiotics until she is 18 months to give her a good head start of being healthy and strong, and hopefully not getting any chest infections in this time
• Enzymes are given before every feed so her body breaks down food (milk). Otherwise it would just pass straight through her, nutrients and all
• Salt is great for people with CF, so she is constantly breathing in the lovely salt air!
• Excercise is also a very important part of keeping healthy as it prevents deterioration of the lungs and improves physical bulk and strength.
• Regular visits to the CF clinic at Westmead

The life expectancy of a person with CF is 35 years. But don't let that scare you, this is double what it was 25 years ago, and is always increasing. There is no cure for CF, but the faulty gene has been identified and doctors and scientists are working to find ways of repairing or replacing it. With today’s improved treatment most people with CF are able to lead reasonably normal and productive lives. A great amount of time is being directed towards finding new and improved ways of treating CF and of finally finding a cure.