They fall in love. They make a baby. Everything is perfect!
Or is it?
They notice the baby's skin is very salty. Salty kisses...very salty. They become concerned as their baby doesn't seem to be digesting her food. She spits up a lot more than they think babies should and they are going through gazillions of diapers. They also notice that their baby is not thriving...not growing or gaining weight like babies should.
They become terrified when she won't stop coughing and is gasping for air...
Finally a diagnosis.
So what exactly is this cystic fibrosis thing?
About 1 in 25 Canadians are CF carriers. If you create a baby with another carrier, that baby has a
- 25% chance of being born with cystic fibrosis
- 50% chance of not having CF, but being a carrier
- 25% chance of not having CF and not being a carrier
CF is diagnosed by an easy sweat test - measures the amount of salt in the sweat. If this is inconclusive then a genetic test is done.
How does CF affect the body you ask?
- Lungs - Inflammation and infection damage the lungs (hence me waiting for new ones), difficulty breathing (hence the Darth Vader effect), coughing (hence me being a pro)
- Pancreas - pancreatic insufficiency means we don't digest our food properly and we need to take enzymes to do the job for us (cause we're lazy)
- Liver & Gallbladder- Liver disease is the third most common cause of death associated with CF. Secretions can clog up the bile ducts of the liver and gallbladder. My gallbladder left me in 2008.
- Intestine - let's leave that one alone, k?
For those of you who want to know even more, you can consult a good friend of mine: wikipedia. Or, of course, Cystic Fibrosis Canada.
***CF affects each person in differing degrees of severity. Not all patients have all complications. Each patient goes to a CF clinic and has their own personal plan for treatment.***
My CF treatment includes, but is not limited to, the following:
|Aerosols that I suck back...|
|...and the junk that goes inside|
|What I puff on|
|1 day supply of meds|
I'm sorry, I can't bottle that and sell it.
Because of this, I had a g-tube (feeding tube that goes into my stomach) installed over 2 years ago. It provides me with an extra 1175 calories per night. Yes, I still eat with my mouth...I get that question a lot. I'm actually much better at eating than I once was; my parents used to threaten me with a bib...then I turned 30 and learned how to eat like a lady.
|G-tube "feed" materials|
|Sleeps with me 5 nights a week...because for 2 nights I like to pretend I'm normal|
|2 separate insulins - the bottom one resembles a highlighter...kids think I'm cool|
Go here for statistics (you don't have to be a nerd, it's actually quite interesting).
Please note that I am not a doctor (although I do look like one with my pager) and that this post is certainly not all inclusive. CF is such a complicated beast, therefore it would be impossible for me to cover everything and get it all correct.
There is currently NO cure. This is why fundraising is so utterly important. Funds are put toward research for effective treatments and ultimately a cure.
The hope is that someday no child will have to grow up a cystic.
Thanks for reading...and if you think I'm brilliant, feel free to let me know.