Who are you in a nut shell

[Aboveallislove]

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

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 isn’t 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

 

[leothelioness34]

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.

 

[chelles07]

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!

 

[tjs23]

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.

 

[Dsnow1332]

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!

 

[Stmiller]

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.)

 

[bigrage]

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

 

[Erickagonz94]

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/

 

[stylecomfy]

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

 

[JoeyB]

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.

 

[stock12]

Hi,
I am Jake 38 male from Melbourne Australia, CF at 6 months diagnosed done fairly well with CF first admission at 30 now have one every one or two years lung function 76%, married about to have our first baby thanks to Science (IVF)
Only just interacting with the board now so look forward to sharing and hearing people stories and sharing in the wealth of knowledge that this board provides.

Oh and a big basketball fan Go Utah! and partial to good old American Movies especially from the 80s!

 

[HaleySwanson]

I'm Haley
I'm 21 years old
Happily Engaged
Mommy to a Cf free,beautiful,three month old little girl and a furbaby.
From Ontario Canada
My younger brother was born and diagnosed when I was three,I showed no signs but they tested me because why not?? Well it was positive.
Pft ranges between 75 and 80
I'm 5ft exactly and 135lbs
I'm a major hippie,who loves to travel and write.

 

[CFsonofaCFdaughter]

My name is Dee
I'm a boy (but gender fluid)
I'm 56
I live in CO
I was diagnosed at age 49
I weigh around 137bs and I am 5'7"
My PFT's are in the 90s
my pancreas is insufficient but still produces insulin
I am divorced and have no children
I recently stopped working (2015)
I was a community organizer, musician, and wasterwater technician
I am a total hippie
I like to read and write a lot.
I can teach guitar
I write songs.
I am a singer/songwriter
my music and singing and playing helps clear my airways
music saved my life
my mutations are F508del/d1152h
I had chronic pancreatitis starting at about 27 years of age.
I was convinced that i was only a carrier at age 29 but was looking for an explanation for the chronic cough and "over active mucous membranes" or so said the doctors.
my mother had CF and her parents were both nurses
my grandfather and his friend Peck Ross built compressors and humidifiers for CF patients for low or no cost.
My grandparents were instrumental in starting the local CF chapter in the Quad Cities in Illinois and Iowa.
My grandfather ended up becoming the head of "Inhalation Therapy" at the local hospital in Rock Island, IL later renamed just "Respiratory Therapy"
An aunt and an uncle both succumbed to CF before I was born.
My Mother made it to 58 years of age before she "left this earth"
her younger brother died at age 58 as well several years later.
I am a CF son of a CF daughter.
I watched my mother die of CF and was for many years part of her respiratory team of "percussors"
So I know what the end will be like and that bothers me a little.

 

[Syeknom]

Welp, might as well throw myself out there and see what happens.
My name is Logan Coelho.
Age: 25 (26 in May)
Diagnosed 4 days into my birth.
Born and raised in CA.
Single.
Current PFT is 50% and fighting strong to get that number up all the time.
Hobbies include eating, laughing with friends, and gaming. Lots and lots of gaming.
I have a Steam account if anyone else does and it's usually the best way to contact me. Account name is Monkey Lord. You'll know me if you see the retro Mario ? Block.
I also have an account with Guild Wars 2 if that means anything to anyone out there.
Otherwise I've been told to come to sights like this for a long time now and I just got out of my shell to see how the CF community is.

 

[Julie78]

Hi I'm Julie. I'm 39, almost 40.
I have not been diagnosed with CF. I've been suffering from escalated severe asthma, intestinal issues labeled IBS since the year I was diagnosed with Type 1 diabetes. In 2012 I had a sweat-chloride test I was told was "normal" Today, I found out it was NOT normal but fell in the "inconclusive" range. I have been reading about delayed onset CF/ mild CF ever since and by gosh I think I have it.

I live in Oregon. I work full time.

I've spent my whole life w/ asthma, including some scary mucous-choking events and sever pneumonia as a child that led them to thinking I had CF, but no follow-up was done by the military hospital in Alaska!
I've been sick constantly all my life, like a simple post nasal drip ends up in bronchitis, sinusitis, pneumonia or something bad >6 times per year. My stomach issues have been absorption related, lots of oily stools all my childhood w/ rapid processing of food. I'm overweight, but I put some of that blame on steroids I've been off and on my whole life and now insulin makes it harder to lose.

Crazy to read everything...I'll let you know when/if I get an actual diagnosis, for now I'm otherwise lurking. Can some of you tell me what your diabetes onset was like?

 

[stylecomfy]

Hi Julie78, welcome to the forums! Just wanted to recommend that you perhaps start a new thread with your diabetes question and perhaps repeat your story, I'm sure it would attract a better response.
All the best and I hope you find some answers

 

[Thelevyeffect]

My Name is Michael Levy!
I am 34 years old ( I see a lot of older ages on here. Wow. We came a long way in the CF community )
I was diagnosed with CF at two weeks.
I have Diabetes (The struggle is real)
I'm fat at 180 pounds at only 5' 6'' (and a half - can't forget that)
I'm married ten years now. (Means no money for ten years.. shhh)
I'm a follower of Christ!!!
I'm always working to become a better ME.
I love to read about other peoples stories....

 

[wmalipur]

Good Thread... I don't know why Imogene doesn't incorporate this type info into the profiles and permit you to display it, IF you wanted to.

I'm David
50 yrs old in two weeks (april 2018 for those of you reading this thread in a couple of years)
Dx at 14 - who knows, friend of mon's one day said " You know, that boy just ain't right!
Grew up in Phila (Roxborough), moved to upstate NY (Millbrook) now in Mesa, AZ
I am a Database Administator.
I have mild lung and pancreatic problems, more sterile than a hospital OR.
I am a DF508, but not sure if it is single double, whatever? But my favorite mutant is a ninja turtle.
I have a min-pin who is awesome!
I have two grandkids (no biological children - wonder why?) Notice, the dog came before the kids an grandkids....???? It in no way implys order of priority.
I own a place in Show Low AZ that is awesome! (see the link, click on it.)
I have been 'certified' as a log home builder so I hope to build my own log home one day, on my place in show low. I'm gutting and rebuilding the interior of the mobile this year, just for practice.
I have no sense of humor whatsoever, oh wait, no - that's my wife. I have an international sense of humor - I'll make fun of anybody, don't care!
I enjoy Sammy Adams -
I work out a couple times a week, not real consitent, take spinning class and lift weights (spinning class = stationary bikes with a task master yelling at you)
I'm fat. that's why i'm taking the spinning classes. .......
I'm certainly not as informed about CF as most of you. I do the most minimal elements of treatment as I can - hate going to clinic, forget to take my enzyms (jeeszes after 30+ years.... tsk tsk tsk.... It's alzheimers now, baby - New Excuse! )

I have the deepest respect for all of you that have CF and for those who are caring for children or partners with CF. By far, you are the finest and most caring people I've ever had the privilage to 'know'. Thanks for your input, information, ideas.

Cheers to you all!

 

[wmalipur]

I am Chris and I am a late diagnosis male of 62 living in Leeds in the UK. In 1957 I had what we then called Asian Flu as it was thought to have started in Asia (probably Hong Kong), not a racist term but just how they used to describe it in those days.That gave me bronchiectasis and despite having quite a few sweat tests over the years there was no sign of CF until I had pneumonia a couple of years ago. They did another sweat test and a gene test (first time I'd had one) and they found one gene that was an indicator.

I accepted the diagnosis and now get the best treatment I have ever had!

 

[atijf]

Name: anit
Age: 22
Location: iran
Marital Status: married to Brad since 8/5/03
CF severity: moderate lung damage FEV1 ~2.1L
Occupation: web designer :بلیط هواپیما تهران مشهد
Current health: lousy
Hobbies: reading, writing and 'rithmatic
Proudest moment: graduating from college
Personal quote: "We must be strong in the face of problems"
Type of nutshell: pistachio