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Does everyone with CF cough? Can be it taken away?

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Cystic Fibrosis
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Posted 12/20/2015 3:35 PM (GMT 0)
I was just wondering if everyone with CF coughs all the time every day. My sister who has it (blood testing came back positive) has had a horrid cough for the past 3-5 years (I forget it's been a while). And by horrid I mean it sounds like she is dieing slowly from drowning in mucus and she coughs really bad in the morning and sort of dry but still bad during the night. Her lung xray showed cysts and shes been seeing a natural doctor to try and help but we don't know what to do. Is it possible for someone with CF to get rid of the coughing? She's 22 btw and was diagnosed with it after a blood test came back positive about 3 months ago. No further testing was done accept for the blood test (one doctor said they come back false-positive sometimes but we don't know and I'm a pessimist so I assume the worst. We went to tons of doctors in the past 5 years and only one wanted to test her for it. Every other doctor said it was something to do with her nose.

Post Edited (SkyVast) : 12/20/2015 8:40:11 AM (GMT-7)

Posted 12/25/2015 10:50 PM (GMT 0)
Hi,

Does your sister also see a CF specialist doctor. That can make a big difference in the care she will be receiving. IMHO unless someone specialises in cf then they do not know the ins and outs of it, will not be up-to-date with the best care approaches. A natural doctor while this might sound good on the surface, generally know nothing about CF and can take some quite dangerous approaches if they aren't fully clued up on cf. Also, natural medicine is stuff that hasn't been quality tested. All medicines started out natural, and then they were changed and tested to be made safer by specialist researchers.

Is your sister on dnase or hypertonic saline, antibiotics, inhalers? All of these will help with a constant cough. When my cough is so bad it feels I'm drowning that's when I go into hospital for iv antibiotics and 2 weeks of intense physio and tlc. That works for me and gives me a few weeks break from coughing.

To ease it before bed I have my dnase nebuliser, hot shower as the steam helps, bricanyl inhaler, acapella physio, colomycin nebuliser mixed with Ventolin, symbicort and then a hot coffee made with just milk as it soothes my throat and eases the urge to cough when I lay down. During the day a have a sweet hot cup of tea to ease coughing fits or a spoonful of honey can sometimes help too.

Coughing is a part of CF and it can be really tiring and annoying.
Hope this helps you suggest some ideas for you're sister.
Gem
Posted 12/27/2015 3:36 AM (GMT 0)

Gemsi said...
Hi,

Does your sister also see a CF specialist doctor. That can make a big difference in the care she will be receiving. IMHO unless someone specialises in cf then they do not know the ins and outs of it, will not be up-to-date with the best care approaches. A natural doctor while this might sound good on the surface, generally know nothing about CF and can take some quite dangerous approaches if they aren't fully clued up on cf. Also, natural medicine is stuff that hasn't been quality tested. All medicines started out natural, and then they were changed and tested to be made safer by specialist researchers.

Is your sister on dnase or hypertonic saline, antibiotics, inhalers? All of these will help with a constant cough. When my cough is so bad it feels I'm drowning that's when I go into hospital for iv antibiotics and 2 weeks of intense physio and tlc. That works for me and gives me a few weeks break from coughing.

To ease it before bed I have my dnase nebuliser, hot shower as the steam helps, bricanyl inhaler, acapella physio, colomycin nebuliser mixed with Ventolin, symbicort and then a hot coffee made with just milk as it soothes my throat and eases the urge to cough when I lay down. During the day a have a sweet hot cup of tea to ease coughing fits or a spoonful of honey can sometimes help too.

Coughing is a part of CF and it can be really tiring and annoying.
Hope this helps you suggest some ideas for you're sister.
Gem

Well see you are assuming she has it. This is what is weird most of all. BOTH our parents came back NEGATIVE for the CF gene. And out of the doctors and specialist she went to almost all of them say they think the blood test may have come back false positive. They all say they think it could possibly be parasites. And when they mentioned that I did remember that one of my friends was treated a long time ago as he suffered from a nagging cough and they saw Cysts in his lungs. When they did lung sugery on him they found parasites actually living in his lungs. So we don't know yet. Our entire family has never ever had a problem with Cystic Fibrosis we've never even heard about it. And a couple of the doctors say another weird thing is her age. She is a LOT older and the doctors said Cystic Fibrosis doesn't develop it's a genetic issue yet she seemed to develop a cough. Honestly, I'm so confused I could pass out.
Posted 12/28/2015 3:14 PM (GMT 0)
Hi,

I'm assuming she has it because that's what you've told me.
For blood tests it is impossible to get a false positive. They test the blood for the genetic fault on chromosome 7, genes can't falsely show where they aren't present. You said she had a sweat test, that test can be wrong.
If neither of your parents are carriers of the gene then the gene can't have been passed to your sister.

There are many people who are diagnosed with cf laterr in their life as it is sometimes misdiagnosed as asthma or they might not have any lung problems until later on. I was in hospital a lot as a child as was my brother however all through our teens we didn't really suffer much with coughing and we were both non-productive with coughing. It's getting worse as an adult again. Cf is a progressive genetic illness, it will generally only ever get worse not better. My friends aunty got diagnosed the other year at age 65.

It sounds like what your family need to do is keep pressing doctors for an answer. Going on what you've said I can't really advice much because you don't know if she has cf or not. Cf and asthma are the only 2 lung conditions I have any experience of.

Here is a link with info about what cystic fibrosis is: https://en.m.wikipedia.org/wiki/Cystic_fibrosis

Hope this helps
Gem
Posted 5/1/2016 3:43 AM (GMT 0)
"There are many people who are diagnosed with cf laterr in their life as it is sometimes misdiagnosed as asthma..." not uncommon! Do get tested - not just with the sweat test but by the genetic testing.
My wife was told for 10 years or so "it can't be ..." but it was. Treatment has made a world of difference.
Now we suspect it has led to Sjogrens Syndrome but are having another fight. The chronic inflammation of CF is likely to lead to it.
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