Please help me uderstand clearly!

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learningcauseicare
New Member


Date Joined Mar 2008
Total Posts : 1
   Posted 3/16/2008 9:01 PM (GMT -7)   
Hi I just started dating the most incredible man, and he has CF. He doesn't talk about it but I want to know more so I can understand. I tried searching the web but even though I have worked in the medical field I logged out more confused. Can someone sum it up in words I can understand? What is CF? What does it mean in regards to lifestyle changes? What are the worse case scenarios? Best case? What can those of us who love and care about those with CF do..other then treat them like a normal person!
 
Thank you for sharing yourselves with me!

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 3/17/2008 4:25 AM (GMT -7)   
Hi there!
You know having CF, we never really have too think about everything, until we start dating someone. When I first met my hubby, for the first half hour, I couldn't even get started about my CF. I was wondering whether to even telling him at all. Then when I did, he just said ok then. He had no clue what CF even meant, but figured he could look it up later.

Now how to describe CF:
It is a gene that you inherit from both of your parents. Each must have half of the gene too create a full cf gene in a newborn.
The gene causes many problems. I can't remember how it exactly works, as I've been told many different things. What does happen though, is things get really sticky.
Mucous in the lungs, gets really thick and sticky, really hard to clear and also a brilliant breeding ground for infections.
It also effects the digestive system, it clogs up the pancreas, so that enzymes can't be made, or get to food to digest it. Most people with CF need to take enzymes with every meal to digest it.
It can also effect the liver, causing damage or cirrhosis. Commonly known as CF realted liver disease.
CF can also make you prone to diebetes. It's called CFRD, and acts pretty much the same as regular diabetes I think.
CF can also cause infertility, more in men than women. In most cases though things can be done too get round that. As usually it is just mucous clogging the tubes. Everything else usually works fine.

Lifestyle changes differ from person too person. Every patient is different, depending on what other gene's are there, and whether they cancel out some of the CF gene effects. Some people don't have pancreatic problems, some people have them really bad. Your environment can also change how many infections you get and how often, and how much damage each infection leaves behind.

Weight also seems to be an issue for people with CF. Most people when they have an infection, lose weight really quickly, and find it difficult too put back on. I know with me, I get really happy when people say I'm starting too look chunkier, as otherwise people say I'm too skinny, and I can't help that. It's just the way I am.

Treatment usually involves:
Loads of tablets (enzymes, vitamins, high-cal shakes, antibiotics, steroids, insulin, tablets for your liver), nebulisers, chest physio. Not many people with CF use all of these meds at the same time. But they are regular meds that are used in the treatment of CF.
Also, IntraVenus (IV) antibitics are used. Soem people only need a course of them every few years, where as some poeple need them every few weeks/months. IV antbiotics, are antibiotics that go straight into a vein. Some people have them injected in there arms, and have a little needle that stays in. Soem have a port-a-cath. IV's are usually much stronger doses than you get in normal tablet form of antibiotics. They can make you incredibly tired, and even more worn out sometimes. The dosage that CF patients use, is usually a lot higher than a 'normal' person would have.

Worst case senarios: Needing a lung transplant, being wheelchair bound on 24 hour oxygen. Having lung collapes, liver/kidney faliure. Having to stay in hospital for months at a time.
Best case: Being able too carry on like normal. Not having many off the effects. Not needing a lung transplant. Keeping your weight really high. Not having too do much of the treatment too stay well.


The only thing I can suggest you do when with someone with CF, is try and treat them normal and equal, but also be very aware of there needs. Sometimes, I'll do far too much, like playing on the Wii or Singstar. I'll be really out of breath and tired, but I keep going. Sometimes just a gentle reminder that I don't have too keep going, that noone will think less of me because I've had to stop, helps a great deal.

I hope some of this helps. If there is anything yu need answering or anything I've said that you don't understand, just ask:)


Co-moderator in 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) : 3/17/2008 5:29:40 AM (GMT-6)

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