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Thread: Who are you in a nut shell

  1. #741
    Super Moderator
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    Hi Cathy and Welcome! I'm so sorry to hear of your nephew's complication. You might want to start a new thread with Bronchial artery embolization in the heading under "Adults" for folks who might have some insight. (I'm sorry, I don't). A lot of folks might miss it here in the "who you are" thread. Hugs and prayers,
    Love
    Quote Originally Posted by Cathy Racicot View Post
    My name is Cathy and my nephew has CF. He is 46 years old and has just had a bronchial artery embolization (BAE) for hemoptysis last night. There isnít much information on the web about this so I was hoping to be able to reach out to CF patients who have had this procedure. My sister is staying at the hospital with her son so I thought I would gather some information to share with them if possible. Thanks

  2. #742
    I'm a 34 woman, was diagnosed at 1 because of lung collapsed. I'm married and I love cats. I have 2 cats because so far we can't seem to have kids so my cats are my kids. I love reading, writing, watching movies, spending time with my family, and learning new things. I'm double delta f508. I don't work because the doctors don't think it's a good idea. I've got some secondary problems also like diabetes and some other things they can't explain like my blood clots without reason. I live near the beach and love the ocean.

  3. #743
    chelles07
    Guest
    Hi!
    My name is Michelle. I live in Missouri with my husband, 2 dogs and our cat.
    I'm 27 y.o.
    Dx at age 3. Double Delta F508.
    PFTs have been hanging around the 30's. They were mid to upper 50s but I got the flu in April 2014 and haven't been able to bounce back yet.
    Currently in Orkambi study for my level of lung function. Other CF meds are: Creon, Ventolin(alubuterol inhaler), Pulmozyme and Tobi.
    If this is helpful to anyone, I'll also add this little tidbit about me: Husband and I had been trying for a child since October 2012. Referred to Reproductive Endocronoligist and started looking into IVF. I had high levels of natural killer cells(which can prevent pregnancy) and with myself having CF they were going to create a probe that would take the 'good' cells out for the IVF; however, they did a more in depth gene sequencing and it was found that my husband has two CF related mutations(that when combined don't necesarily cause CF) so no matter what, the child would have some form of CF. In November of 2014 we decided to adopt, turned in our application and are currently on the wait list for a home study. Wish us luck!

  4. #744
    umm Hi
    I'm Fiff (Male). I am 22 and im from MN.
    I love anime and video games, and have 2 dogs.
    I was Diagnosed with CF when I was 20 years old.
    I love making jokes and laughing, even though i don't come out of my shell alot.

  5. #745
    Hello,
    my name is Snow and new to the world of CF. I was diagnosed a year and a half ago by accident. I'm a 34 year old male Firefighter/ Paramedic with the 508 and T5. Im currently pursuing my private pilots license and just finished fighting the FAA for a year and was granted the third class medical. I was getting pneumonia about twice a year for the past 4 years without identification as to why. After trying a year for children we were directed to a specialist, that specialist immediately confirmed systptoms I had my entire life. I have no sense of smell and my shirt is covered is salt rings anytime I perform work. My wife and I had to perform IVF and had a beautiful baby boy who is now 7 months old. I have been trying to gain as much information as possible for treatment and projected quality of life. Any information from others in the same "boat" would be greatly appreciated!

  6. #746
    My name is Somone.
    I'm a mother of a child who had Cf, he passed away four years ago.
    I have three other children who do not have Cf.
    It was tough for my son to be diagnosed because of how rare CF is in African american.
    I've been spending the last two years getting back to living in the real world, going back to writing has helped me better than any antidepressants.
    I live in New Orleans, La
    I'm married and enjoy being with my husband and daughters, my girls make me feel alive.
    When I'm not with my family I'm working on one of my many books (ertoic,romance,paranormal,horror, etc.)

  7. #747
    Hi to All I am new to the site I am 23 young man. I tried posting previously but didn't think it went through?I am from Long Island, NY I have a double medport in my right shoulder for IV's it is the best thing I had done. Truly makes doing IV's at home so easy. Feel Good everyone

  8. #748
    Hi! I am an 18 year-old who suffers from Cystic Fibrosis. I try my best to maintain myself healthy and aspire to achieve greatness. I would love to get in touch with the CF community. Please check out my blog and comment to meet you all . http://thoughtsofacfgal.blogspot.com/

  9. #749
    Hi everyone, just a quick intro: I'm a woman with CF and I live in South Africa. I have been a member of this site for many years (all the way back to the time of littledebbie who started this thread)! However I had a different username back then and for a long time I was just a lurker lol. But anyway, my new username is stylecomfy, you'll probably see my name around the site as I am also a member contributor to the blogs which are posted in the general section of the website. Looking forward to interacting with everyone again

  10. #750
    My name is Joe.
    I'm a 30 year old guy with CF and CFRD.
    Ddf508 diagnosed shortly after birth due to a lot of intestinal complications.
    Current "Stats": 5'7" 150 lbs, 60% FEV1.
    I've been reading this site off and on since the Vertex studies were announced. I've been on Orkambi for a year and a half now and though my FEV1 has gone down a bit, I feel more stable while on it, and rarely get sick.
    I have a 24 year old brother with CF. We are very similar. I like to think of him as Joe 2.0., because physically he is a slight improvement in most areas, but eventually he experiences every health issue I have (seriously, it's kind of crazy how similar our experiences have been in life, even including both of us getting scars at young ages on our foreheads due to running into stationary objects - chair and doorway).
    I have always loved sports, and it has been tough mentally as the number of them I can compete in has decreased significantly due to my physical limitations.
    Currently, I own a home (live with my dog) and work a full-time job. Those things, along with my health needs, take up a lot of my time and energy. I fill up any other free time with golf, movies, and TV. I have my brother, which is a true blessing, but other than that, I live a pretty solitary life.
    I am still fighting, and will continue to fight, but I am tired in every way.
    I am inspired by many people's stories on this forum, so I thought I would introduce myself and hopefully I can contribute to the conversation in some way as I continue my battle.

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