Who are you in a nut shell

[eliqueang]

My name is Angelique
I'm a girl
I was diagnosed at 2 weeks old
My FEV1 is about 60%
I'm 109 and 5'2"
I have 2 older brothers that do not have cf
but i have 3 cousins who do have cf. 2 of which passed away.
I'm from a small town in New Hampshire and have to travel 45 minutes to clinic and 2 hours for the hospital
I'm in a long distance relationship because my boyfriend is in the military
My 2 cats, Pace and Lucy are my babies
I'm addicted to coca cola
I can eat a big bag of snyders pretzels in less than a day
and i craft like a crazy lady

 

[shellbell]

I am a girl . . well, woman (hate when I went from Miss to Mam!)
I am 52 yrs old
FEV 59 and holding (I hope)
Live in Naples Florida
Married to the most wonderful caring man who is my best friend and the love of my life!
Used to be overweight my whole life, now I am too thin and don't like that either
I am 5'1 and a half (the half is very important!)
106
I run every day and feel that is the most important therapy I do no matter what
I denied having my disease until I was 25, now I wear it as an badge of courage to help others
I sell my own line of skin care on HSN live TV - it is called Ice Elements. I love what I do -takes my mind of having CF
Would love to be a professional male PGA golfer (just not in my genes!)
I love helping others who struggle with challenges and admire all who do.
Recently published a book called Dancing in the Storm with proceeds benefiting CFF. (www.shellymaguire.com)
Love steak, peanut butter and Jelly sandwiches, sushi and blue cheese stuffed olives (not all at the same time, of course)
I value all of my friends and family
I love to talk . . . shop . . . laugh . . .eat . . . and I love shoes (because no matter how many I buy . . . I never have the right ones I need!)
I pray for a cure and thank God Every day, for life!

 

[lprulez]

The names Robert.
I'm a dude.
29 years young.
5'11"
160 lbs.
Diagnosed at 3 months old.
Living in Pennsylvania where I grew up.
Happen to have the G551D Mutation.
My FEV1 is about 60%.
With the help of Kalydeco.
Work full time as a CNA.
Love my job very much.
Had a sister with CF who passed about a year ago at the age of 27.
She was a fighter till the very end and still my hero.

 

[zhian]

My name is Zhi An
48, Male.
Married with 2 daughters.
My niece, 15, lives in China, has CF.

 

[bluegirl]

my name is Barbara
i'm a female and 59 yrs old
i was diagnosed with adult onset CF a couple of years ago after recurrent bouts of pneumonia
started inhaled TOBI a yr ago after a yr of rotating antibiotics, orals have stopped working for me
i am tired ALL the time
i work in a dr's office as the office manager and nurse
i have 2 cats and a chinchilla
i love italian and mexican foods
i am a vegetarian
currently in between relationships (at least i hope there is still someone out there for me)
did i mention i'm tired ALL the time? .

 

[welshwitch]

I'm about to turn 33, so about time I answered this thread

I'm a girl, 33
Diagnosed at 9 months
I work full time at a really fantastic non profit. I also have experience in the tech industry, teaching high school, and many many other jobs
I have a wonderful boyfriend who I basically live with and doesn't seem to mind when I do treatments in the living room of our tiny apt.
I am still trying to be "OK" with having CF although I don't think I will ever be "OK" with it. This makes it hard for me to talk about it w. friends and family, but I hope one day I can be more open
I am still wondering whether or not I will ever have kids and how my health status may or may not affect that
I'm a musician and play guitar and perform at open mikes all the time--I think my CF has made my voice raspier which is great for the classic rock I love to sing!
My FEV is around 110% which I feel extremely lucky for and NEVER take for granted
I will be running a half marathon in March and think that running is the best treatment for CF, hands down

 

[Kimmiegirl]

My name is Kim, I am 40, I have a daughter almost 3 years old with CF DF508 & G542X <--- a stop mutation gene. She was diagnosed near birth, has had 2 intestional surgeries and a g-tube placement prior to leaving the NICU for the first time @ 3 months. She is doing well now. Nice to meet you!!!

 

[ZCarr]

My name is Zac and I've had Cystic Fibrosis for nearly 21 years. I was diagnosed at 6 months after being born near Chicago.
I'm very involved musically and have been since 7th grade, as my father is a band director. I played throughout high school in
Marching Band and now study at the State College of Florida, in Bradenton Florida. My desire in life besides good health is to be
a successful Jazz Pianist and God has given me the talents for me to nurture to succeed. My health has been slowly declining recently
so I came here for some facts and inspiration. Hopefully I'll be able to get back to feeling good for my sake for the sake of my family.
God Bless!

I've read many of your articles and stories and want to Thank you all for your gifts.

 

[AmalynRose]

My name is Amalyn and I was diagnosed about 1 month ago.
I have the deltaF508 and R117H (with a 7T or 9T allele) mutations.
I'm a women.
I am married and we are trying to get pregnant with our first child. (yay!)
I am 24 years old and live in Minnesota.
I am very excited to be graduating with my BS in Cell and Molecular Biology in December '13.
I have a 6 year old cousin (a girl) that has CF.

 

[RissCF31]

Hi! My name is Marissa. I am 31 w/ CF mutations G542X R347P. I have two bro w CF ages 44, 28.. I was dx when I was 3 and my baby bro was dx.. I help my husband with his beef cow operation, and work part time. I am enjoying all the great info on here!

 

[Lisams64]

My name is Jacqueline.
I have a daughter who will be 6 next month and will start kalydeco on her birthday.
Found out she had CF with the newborn screening..very scary i was only 16 at the time.
But now she is 5 she does her treatments with hardly any fuss..includding her enzymes((Which she has been swallowing since like 2 1/2))
She loves to run around, play soccer, ride her 4 wheeler, and loves her horses.

 

[JEstep0102]

Hello All!

Well my name is Jayme, I'm a SINGLE girl, and 27 years old. I love love love kids, but don't have any yet .
Diagnosed just a few months ago...sweat test, after a chronic lung infection that nobody could seem to diagnose. Sinus problems my whole life, but did not have lung issues until last November (now it's an everyday thing).
They are working on identifying my genes...first test came back with nothing so they're onto the last couple thousand.
See my first CF specialist next month...I love my pulmonary doctor and I'm a little nervous to make the transition.
I love sports, but have had 3 knee surgeries so that has side lined me for awhile.
Just trying to stay afloat with this new diagnosis. I work with young kids, but it is proving to be harder and harder as my lung function declines.
Look forward to reading what others have to say.
View attachment 213 Me hiking to stay happy and healthy

 

[Born On Shoreham Street]

Hi

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!

 

[Scorp]

Who am I in a "Nut Shell" .

I am Dan, I am 5'9" x 170 lbs. I was diagnosed in 1959/ 2 X Delta F508's. I am very active. I am soon to be 60 y.o. this year. I am going to celebrate big time. I would have never guessed I would see the 60 mark. I go by the nickname of "scorp" because of my B/D being the last of Oct. which makes me a "Scorpio". Also I have 2 scorpion Tattoo's on my lower abdomin if you catch my drift. I will attempt to do a profile with pics if I can figure out how to get the pics in there... TTYL......Scorp

 

[Lisa226]

Hi, I'm Lisa. I'm 35 with CF and CFRD. I was diagnosed with CF at 4 months old and diagnosed with Diabetes at 12 years old. I culture Multi-resistant Pseudomonas, Aspergillis, and most recently MRSA. I have great lung functions but since the MRSA diagnosis, I haven't been feeling well and my FEV1 has been consistently down 10 percent. I love cooking and baking, reading, and animals! Looking forward to making more CF friends.

 

[BreeAlysia]

Hello everyone. My name is Bree and I am 37 years old. I was diagnosed at age 30 or so after many years of having various lung infections and eventually a CT scan revealed bronchiectasis. My sweat tests were negative, but genetic testing revealed I have one deltaF508 and one D1152H. Right now, my doctors have just started discussing lung transplant with me because of the rate at which (well, that is what I am guessing) my lung function is declining. I am a high school teacher full time and write poetry in my spare time. I like books and movies and a lot of bad TV.

 

[LittleLab4CF]

• Born 1950, (age 63) Wyoming
• Married twice, 1971-1977 Elaine and 1980- to death do we part, Marjorie, a mortal angel.
• DX at age 52 by Salt Chloride Test after world record (for bad) pancreatic function test. Heterozygous S1235R.
• Atypical CF, I probably would have been considered CRMS most of my life.
• Father DX w/CF post mortem at age 48, Mother passed at 59 from heart infection
• One sister six year younger, suicide at age 52, severe bipolar I. I was my sister’s keeper.
• No children but we are now parents (legal guardians) of my sisters two daughters.
• One brother five years older.
• Post Docs in Genetics and Aerospace Engineering
• Olympic fencer*, rock climber and mountaineer, mapped caves for fun and profit.
• Like my favorite historical figures, Washington, Jefferson and Lincoln I have been a surveyor.
• Included in my crafts was a short stint as musical instrument maker, luthier to be precise.
• The next bullet calls me an entrepreneur. I invented and innovated new robotics for 20yrs.
• Started and failed at two businesses, took the third Public and is still on the stock exchange.
• Traveled the world like few people. Six years in total out of the U.S. to more than 35 countries.
• These days I mostly piddle around in my laboratory, go figure.

LL
*In my dreams, but so far, every kid I met “could have been a contender” The U.S. Olympic fencing team never made it to the medal rounds when I was fencing so I probably could have pulled this fib off since we weren’t even in the news.

 

[ORPDI]

My name is Marco,
I'm a 44 year old male,
DX at 9 months - failure to thrive, 621D-1G>T
CFRD at 37 during a pneumonia hospitalization
Live in Chicago,
Married for 12 years to a wonderful women
two children-girl 3 and boy 1 no cf,
have a graduate degree , work full time - workaholic
love music and cooking, mostly salty foods.

Have a great supportive family. Wife, Mom, Dad and Brother (no CF).
My sister (CF) went home to GOD in 2000. Truely miss her. We were each others rock. We had a saying " I have CF but CF does not have me".
Had gall bladder removed May 2013 with 12 stones.
Hernia surgery.
Sneezed polyp out. Now have another to sneeze. LOL.
CFRD at 37
Pneoumonia at 37
Christian- I thank GOD daily for the life he has given me thru strenght and support. Yes CF sucks but it has made me the person I am today.
I live for GOD, my family and helping others.

 

[ORPDI]

My name is Marco,
I'm a 44 year old male,
DX at 9 months - failure to thrive, 621D-1G>T
CFRD at 37 during a pneumonia hospitalization
Live in Chicago,
Married for 12 years to a wonderful women
two children-girl 3 and boy 1 no cf,
have a graduate degree , work full time - workaholic
love music and cooking, mostly salty foods.

Have a great supportive family. Wife, Mom, Dad and Brother (no CF).
My sister (CF) went home to GOD in 2000. Truely miss her. We were each others rock. We had a saying " I have CF but CF does not have me".
Had gall bladder removed May 2013 with 12 stones.
Hernia surgery.
Sneezed polyp out. Now have another to sneeze. LOL.
CFRD at 37
Pneoumonia at 37
Christian- I thank GOD daily for the life he has given me thru strenght and support. Yes CF sucks but it has made me the person I am today.
I live for GOD, my family and helping others.

 

[alfie]

My name is valerie
I am female
I am 26 years old
I am irish
I work full time as a child care practitioner, mainly with toddler age group and afterschool aged children.
My PFTs at the moment are 96, but normally over 100.
I weigh 146lbs and am 5'5. My weight fluctuates but never under 143lbs.
I am engaged and getting married in august 2014.
I have 3 big dogs and I house dog a minature yorkie called alfie (hence my username on this)
I was diagnosed at 6 months old
In my lifetime I have only been admitted to hospital 3 times for iv's, thank god.
I am active and enjoy exercising and live life to the full
I always look on the bright side of life and dont allow my cf to get in my way
If anyone wants to add me feel free. Im finding this forum and site very interesting