IS NATIONAL DISGRACE people public do... - British Lung Foun...

British Lung Foundation

49,658 members59,592 posts

IS NATIONAL DISGRACE people public don't know if CF carriers or NOT

You could say its reflection of a sick nation ANY way i have been talking to afew healthy CF carriers and lung issues such as late on set asthma and stomach issues WHERE commen in healthy CF carriers.

Some had kids babies born with excess mucus on lungs AND mothers only found out they where carriers after private DNA test.

Is sad that you only find out after private DNA test.

AS majority hand full i asked SAID no one as ever said issues could be down to CF carrier status or even tested kids there aware of after or befour givinh birth.

SO given my basic research ONE as to ask what as happend to preventative medican AND just what the F££& is going on.

As you proberly guessed am pretty pissed to say least HAVING suffer what i thoughy antibiotic s&&£'s that i was thought was threw maintenance antibiotcs CAN you imagen my horror at finding out it could be CF as that causes such issues that leads to melabsorshion and eventually kills you

I guess my lung doctors have got the work cut out as they have lot fixing explaning to do.

Nothing less than a cure am going to seettle for ... so if the dont like it Izt's toigh and the best reffer me to someone that dose like it

The ability to reply to this post has been turned off.

15 Replies

You have discovered so much and l hope you get to speak with someone who can help you. Good luck with that. Xxxxx

in reply to sassy59

Hi Sassy all defo be speaking to someone YOU put trust in doctors and the spin you losd lies till dizzy and dont know whats going on.

Is sad that if am right this lot of unnessasery siffering going on.

My symtoms cant be coincadece but it explains a lot

Are you saying you think you actually have CF? If so, I take it you have told your Doctor. It sounds as if your condition needs further investigation.

in reply to Azure_Sky

I dont have full CF am a carrier of CF gene for me to have full CF i would needed two pices one from mum one from dad.

But you can get one pice cf gene past down line from other healthhy carrier APARANTLY it hangs out in lungs intestines waiting to meet its other half.

I guess if predispoed by being cf carrier i would say you could be at risk of everomental factors trigering mutations activation and making things worse.

Well thats what i think also DOCTORs should not just dismis carriers as this lot of bronchitiasas suffers out there doctors put down to idopathic SO if i was to put my money where my mouth is i would say lot bronchitiasas suffers are what doctors say term as healthy so called cf carriers.

Doctors know this THATS why vauge with bronchitiasas diagnosis but becouse the full of gov s&££ they say nout but feed a lie that is healthy cf carriers.

I think i got my roug gene of my mothers side i think O and its lot women suffer bronchitiasas & babies.

Clearly i could be wrong as am not doctor or out but this to much coincidence for my likeing that needs explaning

What would you like your Doctor to do for you? If indeed anything can be done. I know you are very worried about being a carrier. Presumably you already have a diagnosis?

in reply to Azure_Sky

Have few diagnosis such as emphysema copd bronchitiasas idopathic have rescictive obstucktivr lung dieases AND one of my very X gp's mistaken granuloma for lung cancer.

That S&££ is like school boy error.

But then i was told i had lung tumour that resoved its self.

Thats with out stomach issues.

But yer i want doctors to do just tad more than am.

So am going to get my lung doctor to give me stuff give those with CF to help with guts issues

And i want stuff to stop lung inflamation.

Have tried there tad of doing nothing so now going to have to convice me the doing all can by adressing issues have

Is all very complicated, you have both lung and digestive issues. From what I have read on here, ling issues and digestive problems often go side by side. I have both. Reflux seems to be a common problem. Personally, I wouldn't think a dormant CF gene is likely to be responsible for your illness. Surely it would manifest itself in a more obvious way.

in reply to Azure_Sky

I think it as am just lucky i only carry one cf gene but it dose make sense.

I allways wondered why doctors was always asking if i was drinking enough.

Kept talking about being dehydrated.

With CF its trashes salts and stuff causes dehydration.

Defo to much of coincadece i think given my symptoms

zube-UK profile image
zube-UK in reply to Azure_Sky

Hi Azure_Sky, I'm afraid jeffAjax is right, many of us on here have both lung and digestive problems, I have both and malabsorption since birth. My consultant became quite nasty when I suggested a connection with CF, this is all wrong because I live with the symptoms of CF but mine is labeled non classic cf bronchiectasis and it is considered "healthy"... I am so not healthy, it is a struggle for me each day and I have missed all my education, pneumonia, too ill for school. Sorry, I do not get time to write on here much as trying to care for bed-bound hubby as well as myself.. Azure I hope you are ok..

JeffAjax, you keep searching, good lad !

Azure_Sky profile image
Azure_Sky in reply to zube-UK

Yes I have digestive problems as well as Emphysema. Like so many here. Although in some cases, the drugs my contribute to the digestive problems.

Hanne62 profile image
Hanne62 in reply to zube-UK

I've the same label i.e. "atypical non-cf bronchiectasis" eg I've grown bacteria which are unique to cf. My con thinks I have an as-yet unidentified cf genotype (new ones are being discovered all the time.) He recently identified cf in a lady of 70!

But I n many ways the treatment is identical. The only "advantage" of having a cf label is you get access to specialist nurses, home IV support etc, whereas with ncfbe we are left floundering

in reply to Hanne62

Defo agree about cf label as that's when address guts issues too

in reply to zube-UK

Hi Zube could not put it better myself THATs what gets me about my lung doctor says guts nout to do with him but if is CF I think it dose SO am going to get him to write to my gi doctor and get them to give me food stuffs that sort my guts out.

Should not be down to us suffers to sort repopulate sort our guts out.

Our guts are integral part of our innate immunity so fighting infections is very much there job.

What is cf ?

Toci profile image
Toci in reply to BonnieBon

Cystic fibrosis

The ability to reply to this post has been turned off.

You may also like...