Re: CF/Dennis

[Guest guest]

Hello Dennis,

I'm in same way as you. You're not alone.

Being adult and have dx of CF it's not easy.

My dx of CF was done due pancreatic issues too, by the way in my 20's I also

had serious lung troubles. But by now my lungs are stable.

I done at least 5 sweat tests, no one came back negative, I have positive

and borderline ones.

I did not done blood DNA test, so I don't know my mutations.

I think that you must be have 2 of aleles. But there are close to 900

mutations, so the most common it's so easy to find.

As I read you have positive sweat test and a positive genetic test, so for

me your dx of CF is correct. I also know that it's more common have lung

problems, but pancreas problems is also a big deal in CF.

I also gave up to prove to any doctor that I really have CF, I know my truth

For the same reason, being adult and no much lung involvement.

If I go to some doc and say that I have CF, if he says OK or no way, it's

the same for me.

My actual gastro really believes that I have CF and in 2000, he sent me to

see a pneumologist because I was having a respiratory infection.

I'm also on low fat diet due pancreatitis and reflux.

If you are prone to talk more, please e-mail me.

I think that we can help each other.

All the best,

Liane

you wrote:

I didn't see a post for anyone discussing this but I tested positive

for the gene mutation. I also tested positive for having cf through

two sweat tests. I had late onset which means I had my first

pancreas attack when I was 27 and it was considered idiopathic for 8

very long years. Before I knew that was the cause, I had been

struggling with every doctor in the few hospitals around me to

listen to what I was saying. I was called a liar, closet alcoholic,

and a drug addict for years. I remember laying in the hospital bed

hoping that just one time when they did the ct scan of my abdomen,

they would actually find something so I would know what was

happening to me. No such luck. When I had the dna test for the

gene I remember that I broke down and sobbed when the test came back

positive. Not that I had it, but that I had proof that I had been

telling the truth and now I really know what is happening to me.

Problem now is, because I only have pancreatitis and no lung

disease, I am not recognized as having cf. there are no cf doctors

that specialize in gastro and there are no gastro's who specialize

in cf. Huge dilemma. Cf people say 3000 calorie diet high in

fat.......gastro says low fat, low fiber, you know the drill. So I

am a halfbreed. Let me tell you, there are no doctors for

halfbreeds. And to date, I have yet to find someone like me with

the same thing. I am still going around in circles.

dennis