female 32 wcf diagnosed a month ago

[anonymous]

Hi everyone,
My name is Janice,I live in miami since 1999, Im originally from Argentina.I'm sorry if my spelling is not that good<img src="i/expressions/face-icon-small-sad.gif" border="0">
I was diagnosed with cf about a month ago, and I still feel a kind of lost... I am full of questions<img src="i/expressions/face-icon-small-confused.gif" border="0">I'm confused..
When I was 16 years old I was diagnosed with asthma, I was being treated for that with inhalers and viccines.I was doing really good, I would only cough when I would get a cold and that's it, but when I came to USA 6 years ago I started coughing everyday...and docs would tell me that it was the air conditioning...give me atb and that's it.
But at the same time 6 years ago I started having pancreatitis without a reason (like drinking alcohol or stones in my gallbladder)So one of my docs said that I had sfinters of Odies disfunction....so I ended up having surgery of my gallbladder
<img src="i/expressions/face-icon-small-disgusted.gif" border="0">3 years ago.
Last november I was coughing like crazy green and a lot of blood...went to doc and order me a ct scan, they diagnosed cancer in my lungs, so I went for a biopsy, it was negative but it showed in the culture I had a bact. Mycobacterium abscesuss. I been treated for that but this one is almost resistant to everything except levaquin.One of my doc told that he was thinking that I might have cf because of my pancreatitis , so a month ago a did a boold test and showed I have two mutations f508 and x2769.
Now I'm at a cf center in miami, in july I will have another biopsy done.
Every day I read what everyone posts it is like a big family making you feel you are not alone and it helps me a lot to understand about cf..
Janice32w/cf

 

[roblake29]

Yes, you are certainly not alone. I think most people with CF are diagnosed early in their life (Me for example, just 8 months old) but I have heard about a few incidents where people are diagnosed in their 50s. And I think your particular case just goes to show that CF affects each of us in different ways.
I hope for you these forums are interesting and enlightening. We tend to bitch at each other sometimes (lets be honest) but when it really matters we are all one great big family! You should find it supportive and encouraging. I have learnt so much about CF just by reading and getting involved with various forum topics. I do hope that you have luck in your health, and you continue to post messages on here.

All the best

Rob 24 wcf

 

[CindyH]

Hi Janice,

I just came to the forum a few days ago, welcome <img src="i/expressions/face-icon-small-smile.gif" border="0">

I had my gallbladder removed over ten years ago. I too have kidney stones and diabetes because of pancreatic deficiencies. I was diagnosed with CF at 6 months of age.

Are you taking any enzymes for your pancreas problems like E.C.S. capsules?

Good luck with your biopsy in July, hope to hear from you before then!

 

[anonymous]

Hi Janice,
We have a few things in common...My name is also Janice (spelled the same way as yours), and I was also diagnosed with CF later in life at 25. All my doctors told me I had asthma and allergies my whole life. I didn't experience pancrease problems until recently, so I have not been through any kind of surgery in that matter. It was quite devestating to find out about having CF later in life, but now you will be on all the correct meds and treatments. And will most likely feel a lot better having the right treatments. Has your CF center discussed putting you on IV antibiotics? What are your PFT's? If you want to talk you can e-mail me janicem@iesupply.com
Take care!

Janice 26 w/cf, expecting for the first time <img src="i/expressions/face-icon-small-smile.gif" border="0"> and it's a boy w/out cf..yaaayyy!

 

[anonymous]

Hi Janice,
I am 37 and was just diagnosed with CF. Diagnosed in my teens with "asthma" - started having alot of trouble breathing over the past year (couldn't walk to mailbox without heaving for air). I have very little lung function - but, things are going to get better now that I know what is wrong.

Good Luck,
Sadie

 

[anonymous]

hi everybody!!!
Nice to meet you all!!! I'm a little slow to answer because I go to school full time and only read messages at night.
Hi Cindy !,my doc didn't give me any enzymes to take yet because he says the liver and pancreatic enzymes are fine now, he says I'm still pancreatic suffient. I really don't know which are the sign and symptoms when you need enzymes??
Congratulations Janice on your baby boy!!!!I'll write to your e-mail!!!
HI Rod!

Hi Sadie,I feel the same way heavy for air for example today...here is to wet, the humidity is high and I coughed all day long .
Last time I saw the doc my lung function was 82% and he told me to do aerobics every single day....cardio cardio cardio to expand the lung and that way you don't get much infections....
I used to excercise not a lot but since I started with levaquin the atb. it affected my joints and I couldn't even move my fingers I felt like I was 90 years old..so I stopped excercising.I need to start back again now that I'm not taking the medication and my joints got better....
I have to do another lung biopsy in july because I did 2 sputum test which tested negative for the culture of all kind of bacterias and also the mycobacterum that I had but in the ct scan still shows some lesions in my lungs. He thinks I still have something.
He also suggested me...to stop studing at school which it was very frustating for me...I was really depressed latelly because I'm at the dental school and I'm graduating in 9 months. I know although I take care of myself with every patient I treat , Iknow the airborns and aerosols are very dangerous to me ....I don't know I might have to choose.....but it is very difficult because I love the career by heart...I"ve done this since I'm 18 years old first in Arg entina which I graduated and now here doing it back again for the second time.....Well that's life....
Thank you all!!! We"ll keep in touch!
Janice32 w/cf

<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[2sickkids]

For you diagnosed later did you have to pay for the testing youself? I have 2 cf'ers. My doctors have been talking about me having it since april 04. But not tested me. The closest cf center does not take the type of insurance I have and they need to rule out ever other thing possible b4 they test me 4 it. . My doctors told me till they get negitive cf test they are consider me a cf'er. I think this is all a waste of money as well as nonesence. If they think I have it why not just test 4 it not spend over a year testing for things they don't think I have to prove my symptoms fit. No to mention the fact I have been paying co-pays.

 

[anonymous]

My doctor had me go to my daughter's CF center to be tested - our insurance company paid for the testing (sweat test). Then once the sweat test came back positive my insurance company paid for genetic testing. However, insurance company did say that if I wanted to just do the genetic testing and bypass the initial sweat test I would have had to pay for the testing.

 

[anonymous]

You really need to get YOUR doctor and your children's CF doctor communicating on this issue. There are letters that can be written to the insurance company (hence the involvement of the CF doctor-even if it is a pediatric doc, he probably knows more than your regular doctor) and they can authorize a one time visit to an accredited CF center for a sweat test, or they can do a genetic test on you-or both. Although it seems logical that your doctor wants to rule out everything else first, and that's the way they have to do it to get insurance companies to pay-your family history of CF (your children are a very good indication, you are ovbiously at least a carrier, maybe even more with all of your health concerns) CANNOT be ignored and any professional who cares about his license would push for the coverage of such a test.

I urge you to get this test done ASAP! Just as you advocate for your childrens health, you need to advocate for your own health.

Julie (wife to Mark 24 w/CF)