A couple questions

[Rhino]

Hello, I guess I should introduce myself first. My name is Ryan and my fiance are set to get married Oct. 21 this year. We are both 25. She has been sick and in and out of hospitals for the past 3 years or so. Two days ago, after having a bronch, the doctor told her that he believes that she has some sort of CF but he doesn't know what type. He believes it is a sort of mutation and has never seen it before. He's sending us to Colorado to have tests done and narrow it down. I was just wondering the different types of CF and if anybody out there could enlighten me. I've been scrambling to get as much info as possible these last two days. Any insight would greatly be appreciated. Thanks so much.

 

[Emily65Roses]

Sounds like your doc is just a tad CF ignorant. Pretty much any doc who isn't a CF doc will be. There are no set "types" of CF. Every single CF case is different. You get people with little digestive trouble and lots of lung trouble, or little lung trouble and lots of digestive trouble, or little of both, or lots of both. It's kind of a gradient thing.

As for him believing it is "a sort of mutation" no no. To have CF, you must have <u>TWO</u> CF gene mutations. They can be different, or they can be the same one... For instance, you could have two copies of the single most common called DeltaF508... but you must have two.

 

[miesl]

I recommend you check the cff.org website to make sure you are going to be visiting a CF center. Plus, it would probably be helpful to browse the website a little (and arm yourself with facts) to see if some of your questions were answered.

 

[anonymous]

I live in Colorado and we have some Great CF doctors here. There is a big childrens hospital in Denver and many tests and studies are done in Denver. Frank Accurso or Jeff Waggner are two of the top head CF doctors here. Colorado is a good palce to come with some amazing doctors and fantastic facilities. We have an entire adult center in Denver as well, though I have never been there.

Katie

 

[anonymous]

Hey,
I just wanted to add that my husband also has a less common form of CF. He has a copy of the common dF508 mutation but they haven't been able to identify his other gene mutation. I guess it's not on their registry. He has lung problems but is pancreatic sufficient.
Hope that helps!
Shauna

 

[anonymous]

Hi I'm doing a school project on Cystic Fibrosis and i was just wondering whether anyone could please tell me whether the abortion rate is higher is the parents know theyre going to have a child with Cystic Fibrosis.

 

[thelizardqueen]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rhino</b></i>

Two days ago, after having a bronch, the doctor told her that he believes that she has some sort of CF but he doesn't know what type. He believes it is a sort of mutation and has never seen it before.</end quote></div>

I didn't know you could tell if you have CF by getting a bronch done? Your girlfriend needs to get a sweat test done, as well as a DNA test done to determine if she has CF or not. This has to be done at an accredited CF centre.

 

[anonymous]

Hi I'm doing a school project on Cystic Fibrosis and i was just wondering whether anyone could please tell me whether the abortion rate is higher if the parents know they are going to have a child with Cystic Fibrosis. Any help is <b>greatly </b>appreciated.

 

[Emily65Roses]

<div class="FTQUOTE"><begin quote>Hi I'm doing a school project on Cystic Fibrosis and i was just wondering whether anyone could please tell me whether the abortion rate is higher if the parents know they are going to have a child with Cystic Fibrosis. Any help is greatly appreciated. </end quote></div>

Find an appropriate place to ask, instead of taking over someone else's thread about something entirely different, and then maybe we'll help you.

 

[AttyMom]

From what I've been told at my CF Clinic, they have now identified over 900 different CF mutations. The best bet for your fiancee is to go the route of the sweat test and DNA analysis as suggested above in this thread.

Good luck!

 

[anonymous]

She had the Sweat Test done about a month ago and I'm not sure what exactly her number was but the doc told us it was negative. I know I've heard that the sweat test is just a precursor and you can still have CF without failing the sweat test. I'm not sure if you can "fail" a sweat test but I didn't know else how to write that. Sorry. Basically, every doctor that we have seen has no idea what's wrong with her. This is the first doc who has gone this far and done the bronch. He said he's never seen anything like what's in her lungs before, which isn't exactly uplifting, if you know what I mean.

 

[Rhino]

Sorry, that was me above. Not Anonymous<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[thelizardqueen]

Does she know what is growing in her lungs? Docs can take samples of whats there and find out.

 

[Rhino]

I will quote the doctor when he said, "There is a bunch of crap in there." I'm not sure if crap is a medical term or not. Whatever is in there, it is being tested now and we should find out next week sometime.

 

[JazzysMom]

Just a word of thought about the sweat test. There is never a False Positive result, but there can be a False Negative result. Basically for various reason (one is having the test done somewhere other then an accredited CF center) the sweat test is inconclusive or comes back negative yet there are enough other symptoms to justify getting the genetic blood test. This is where they look for the TWO mutuations that will verify if she has CF or ONE mutation to know if she is a carrier or NONE so she has no worries. Let us know!

 

[anonymous]

Hi this is his fiance who is sick. Yeah, they took samples when they did the bronch. The doctor did say one of the samples had already grown an atypical bacteria on it when i went in with pain and questions. I am really worried because the doctor said I had abcesses in my lung as well which i have begun coughing up. I had the sweat test done with another doctor a few months back and all they said was the test came back negative they didn't give me any numbers. My current doctor wants to send me to Denver because he in not familiar with what i have and thinks it is rare. Any input anyone has would be greatly appreciated!!

 

[Jane]

Will you be seen at National Jewish in Denver? They specialize in mycobacteria. Absessus is a kind of mycobacteria, did your doctor think maybe it was that kind? How are they treating you in the meantime?

How scary for you, a lot of stuff going on. On another thread, there was a link to a forum on mycobacteria. That might be helpful while you are researching. Good luck, and let us know.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ntminfo.com/support/view.asp?id=3029&s=10
">http://www.ntminfo.com/support/view.asp?id=3029&s=10
</a>
Jane

 

[thefrogprincess]

It sounds like you finally have doctor who is willing to take the necessary measure to find out what is wrong. That in itself is encouraging. I wish you much luck, and if it is CF this is a wonderful support system. Please visit the CF Foundation's website at www.cff.org

 

[anonymous]

So is mycobacteria related to people with CF? I saw alot of info talking about how it is found in people with HIV/AIDs but there was no mention of any other ilnesses. I really appreciate all of the wonderful advice everyone has given me. I am going to Denver nad have heard really good things so far.