learning about CF....

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New Member

Date Joined Apr 2008
Total Posts : 1
   Posted 4/22/2008 6:28 PM (GMT -7)   
my friend and i are doing a report on CF for science and need to learn more about it so we decided to talk to the people who really have it insted of just talking a print sorce and reading what Dr's think. so we can have a real person who has it have there opinion on things. the general idea of this is so that we know more about it so we can help in the future somehow.

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Date Joined Feb 2007
Total Posts : 1050
   Posted 4/23/2008 2:02 AM (GMT -7)   
Hi there,
Good idea :) When we had to study CF at school, the info was so old and pointless. The kids in the video they showed us, had 60's style hair, this was in 2004, a lot had changed in that time.

CF is one of the most common life-threatening genetic conditions. Which can have an effect on the lungs, digestive system, liver, heart.

I forget how the gene actually causes this, but it makes mucous really sticky and makes a perfect breeding ground for infections such as Staphlococcus Aureus and Pseudomonas Aeruginosa and Burkholderia cepacia. Many people with CF are colonized with Pseudomonas, meaning they can never get rid of it.

Regular treatments include:
Enzymes-to digest food
Oral antibiotics-for smaller infections
Nebulised antibiotics-long term to slow down pseudomonas
Intra Venus (IV) antibiotics- 2 weeks course every 3-6 months
High calorie drinks- to keep up weight and strength
Liver tablets- Most people with CF take Ursodeoxycholic Acid, to slow down liver damage.
Insulin- For people with CF related diabetes (CFRD)
Slow Sodium-In hot weather. People with CF sweat 100% more salt than your average person. In summer, it's like being dehydrated without the salt tablets, as salt levels drop far too low.

My opinion about CF. It's annoying! You have a daily struggle, some days much harder than the rest. You don't know what's around the corner in regards too your health. You can't decide whether to live life dangerously with lots of fun, or safetly and perhaps not fulfilling everything you want. You are given the life expectancy of 31 years, see it plastered in newspapers and on TV, and just get told by medical staff, well, that probably won't be you.

When I was young, there was a campaign started, called the tell 10 appeal. You handed out leaflets and straws, and told people they had too hold there nose and breathe through the straw for 1 minute.
I was incredibly well back then, and played the trumpet, so my lungs were in excellant shape. Yet, blowing through that straw was so hard. Back then I remember thinking 'this is a bad campaign. My lungs don't feel this bad. It must just be to get extra money'.

Year's later, and blowing through that straw, that felt easy compared too now. If I try and blow through a straw now, 2 breaths and I have a coughing fit. My lung function is meant to be one of the best for my age. But right now, breathing normally is a lot of effort. I used to prefer running up the 4 flights of stairs in the hospital, as I hated lifts. Now I see 1 flight and get scared of how I'm going too feel when I get too the top.
Most people with CF are on a high calorie, fat and salt diet. Sometimes, every single meal has too be full of calories. Infections take up a lot of energy, as well as making you not hungry. Meaning that a lot of people with Cf are underweight.

I'm not sure exactly how you wanted this question answering. If you need to know anything else, just ask.

Moderator of the Cystic Fibrosis Forums
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
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Post Edited (Darkies Gem) : 4/23/2008 3:07:19 AM (GMT-6)

Regular Member

Date Joined Apr 2008
Total Posts : 23
   Posted 4/29/2008 12:24 PM (GMT -7)   
we had to do that then had a test i got 18/20 as i now a few people with CF.
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