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Posted 5/20/2006 2:50 AM (GMT 0)
i know i havent written awhile again but its been such a stupid stressful year and im sooooo about to give up. let whatever happens happen..Well about 15 yrs ago i had a aunt With Cf however, they didnt dxed her cuz of her age until about 4 days before she passed. they took her off oxygen and all. they said she was only a carrier at first, Well they did a gentic test on her 2 weeks b4 she passed and 4 days before it came back with 2 diff kinds of genes..one was the delta..i dont remember the other one..anyhow..Today i get a call from my doctors..ok rememeber i was dxed with cf at one time Well today they said i am a carrier instead of having cf i just have the symptoms..umm huh? wtf? how is it possible to be "just a carrier" and have, GERD,Chronic pancritis( i dont know how to spell it), pancreatic insuffiency,Asthma, recurrent brochitus infections,recurrent sinus infections,2 sweat test results:58 and 38,ive went from 145 lbs to 104 lbs within 3 months, i dont get hungry, i have stomach pains every single day, im on like atleast 50 pills a day..but yet im only a carrier..omg..im soooooooooo confused..so i guess its gonna be ok to stop taking my meds right? i dont have it im susposed to be a healthy 22 yr old with symptoms of Cf but yet not have the disease..ok ok 0k..trust me i dont want the disease..but i dont wanna end up dead like my aunt either...now if you talk to my stomach doctor he is 100% sure i have the disease..im lost..can ne one make sense of this??i dont wanna stop everything and be like my sister n aunt and be dead..i have a 2 yr old to take care..here in florida medicaid which is what im on dont cover for the ambry test..Can someone help try to make some sense of this stupid crap..i dont know how much more stress..testing, i can take..im fed up with all the doctors here. someone told me its prob cuz im 22 so im not gonna bring as much money to them cuz im not a child ne more..whatever im still young..i mean hello..im not 40 just having symptoms and if they r right im taking em to court,,thats a bunch of bs..Sorry for venting but im lost,confused,aggervated,and fed up with all this stuff yano.. im losin sleep i have no appeitite now from all of this going on and everything i read says..carriers are symptomless..

eeerrrrrrrrrrrr

tricia

Posted 5/20/2006 3:58 PM (GMT 0)
Hello Tricia. Where are you being treated at? Is your doctor affiliated with the CF clinics at all? Did you have genetic testing done, and with who?

Sorry for all the questions. Venting is good. Have you tried a different doctor and who is your support system (Mom, Dad, sibs) at home?

Take care.


Sandra
Posted 5/20/2006 11:36 PM (GMT 0)
There is a such thing as a false negative, but not a false positive. If you've tested positive twice, then you do have CF. Make sure that you have a CF specialist following you that is affiliated with a CF centre.
Posted 5/21/2006 5:36 AM (GMT 0)
I most definately agree with Chaser and Sandra's comments. Really be sure your going to an appropriate CF center due to, they are specialized in detecting these issues you are having.

Tricia....I know it's stressful with all thats going on in your life, try to have someone that knows you well to help sort out the first step in making things better for you. Perhaps, write down your pro's and con's and see what will help you understand things.

Hope this helps.
((((((((((((Tricia)))))))))))))))
Posted 5/22/2006 3:21 AM (GMT 0)

thanks for the replies. yes i am going to a CF center. its in orlando florida. but someone told me the only reason why im having so much problems with them is because im not a "kid" anymore. i dont understand that at all. i mean since im not a baby does it mean my life dont count? um hello im only 22. its not like im just being dxed at like 60 yrs old ya no? but ne how, my stomach doctor who is at cape canerval is having me transformed he is the one who did the small gentic test on me and found out i DO have the delta f508 gene and we r going to try to find a way to get the ambry test. since i live in florida my insurance dont cover it. but hes going to look at some options with that. hes the one who discovered the whole CF thing. i do have a support group here. but however they r getting stressed out too. what is a false-negetive test result like chaser mentioned? ive never heard of it. its like i never heard of being a CF carrier with symptoms. but hey what do i know im not a doctor. who cares what i say. im to the point tho where im at why should i care if my doctors dont? how can a doctor dx u with cf and then tell ya oh i made a mistake u r a carrier with all the symptoms instead. i dont understand that. so why did they dx me in the being with? i hate going to places thats only been there for 3 yrs and i hate going to a doctor to where this is only his 2nd yr doing CF. i wish i knew what was going on. im so confused right now. and im tired of all these headaches. im so tempted right now to just move back to ohio and go to my sisters old cf place and see what they say. So if anyone can make any sense of this please let me know. it would greatly be appreciated it! Thanks

Patricia

Posted 5/22/2006 1:41 PM (GMT 0)

Hello Patricia.  I think what Chaser is refering to on the negative/positive test is that some people can test negative on the sweat tests but still have CF (dna will show 2 mutations). So, it is not 100% accurate.

I do hope you find some answers for all of your health problems.  Steven Keiles is director of Genetic Services at Ambry and may be able to help answer some of your questions.  He has helped me out and is quick to reply.

Take care,

Sandra

"When in doubt, always consult with your health provider".

Posted 5/23/2006 12:24 AM (GMT 0)
You are correct Sandra. There is a such thing as testing negative, but still haveing CF - that's why a dna test should be done. But if you've tested positive, then you most definitly have CF. That being said, if I were you, I would think about getting another CF specialist. I don't think its possible to have ALL symptoms but just be a carrier.
Posted 5/23/2006 2:37 AM (GMT 0)

Thanks for all the advice and just so you know i am going to see a differnt place. i just found out today the place i was going to is not licensed so im going to travel a little more south and go to the west palm beach place which has been licensed for over 19 yrs in Cf. this is so aggervating and they told me the same thing. if you have ALL the symptoms of cf you CANT be just a carrier. you know i was hoping thats all i was and my dad was wrong. but however its seems my dad was right and they were wrong. well i need to go do my meds and stuff im suffering from a brochitus infection right now so i dont really have the strength to write another long thread i just wanted to say thanks for all the advice and help.

hope all is well with everyone

faithful

Posted 5/23/2006 12:32 PM (GMT 0)
Awsome News Tricia!

I am so glad your going to a different place for another opinion. Just think, it may be worth your trip to get the answers you need.

In Texas...The closest CF Center is in Houston, San Antonio, Dallas....so people outside these areas have to travel a distance to get to a CF Center. I am so thankful for our CF Center here in Houston.

Keep us posted on everything.
Hugs!
Posted 5/27/2006 3:44 AM (GMT 0)

Well, I am not getting the Ambry test done cuz of my ins like i told yall before, however, i am getting a similar test done which tests for over 800 genes. the last genetic test i had done only checked for 22 genes and thats how they found the Delta f508 gene. The doctor said, There is STILL a possibilty of just being a carrier even tho i have all the symptoms however if thats the case they need to figure out what is causing all the health problems i have. At first they had me on this one eneyme and it was keeping my weight pretty steady at 115 lbs and once a month(hint hint) i would go up to 118 to 120 but i cant keep food down again and i am back down to 110.(yay) i dont feel very comfty at 115. i miss seeing 105. but i know the extra few lbs is good for me cuz of Cf. my dad says he knows i have cf the doctor said its a good chance but still the possiblty of the carrier thing like i said. so i wondering now, is there actually anything else out there that can cause asthma,gerd,chronic pancreitis,pancreatic insuffiency, and all that other stuff besides cf. my pancreas is filled with mucus my lungs is filled with mucus and my sinus are filled with mucus. i guess all i can do now is wait for the results. ugh i hate waiting i just wanna know. i been going thru tests for over a year now. its such a llong and stressful process. right now im fighting a brochitus infection and sinus infection and its my 23rd birthday oh joy right! being sick on your birthday is so much fun. not! today i really wish me and my bf were still together i called him and told him how much i missed him but he said he cant do it. its to hard. if i find out  i do like everyone says have cf i will never again tell anyone im close to. i dont want anyone else running away.

anyways ihope everyone is doing good and have a great memorial weekend. ill be working!

Tricia

Posted 5/27/2006 12:34 PM (GMT 0)

Happy Birthday Tricia!  I  hope you get to feeling better and get some answers to your health problems. With all of your symptoms and the one gene being identified, it sounds to me as if CF is your diagnosis (In my opinion, but I am not doctor). You have already had one doctor diagnose you as such, right?

As for the boyfriend, you will be fine, just take one day at a time (believe me, I can relate).  You are young and have many choices and opportunities awaiting you.

Try and have a wonderful weekend! :-)

Sandra

Posted 6/2/2006 3:08 AM (GMT 0)

Hello again Tricia.  I saw your other post in "pfts".  You had said you will be getting your results from another test shortly on your genetic testing.

Just wanted to let you know that Steven from Ambry has given me some information regarding the Ambry test and insurance. They have just added a new network of insurance companies that covers hundreds of individual plans and they also have an insurance preverification form available on their website to assist patients and their doctors in determining coverage prior to testing. I believe you can complete the form online and fax it in.

Hope you get some answers soon. Just thought you may want this added information.  Keep us updated and good luck.


 


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