Who are you in a nut shell

[chrisanderson251]

who are you

hi my name isChristopherand i got cf.I'm21 and a maleI was told that i had CF at the age of sixmonths old. I have struggled with doing mymedsall my life.My FEV1 is at 92% and that is good. What is yours at?I'mmarried(2 1/2 months)I got a baby on the way it doSeptember9th

 

[LisaNRiley]

Hi,
My name is Lisa. I am 33 years old and have CF.
I was diagnosed at 4 months old.
I also have CFRD.
My last FEV1 was 87 percent.
I lost my sister to CF last year on May 3, 2010.
Looking for new friends, support, and sharing stories.

Lisa

 

[LisaNRiley]

Sorry this came up so many times. I don't know what happened.

Lisa

 

[tgd]

My FEV1 is about 70%. It's really gone down in the last year (last year was really rough) -- but then again I'm 56! Diagnosed at 46, so I can't complain. The hardest part is creating (and sticking to) a routine for the meds. For me, excercise is a lifeline. My upper body stregnth is pathetic, so I walk every day that I can. Every step I take means I'm fighting back!

 

[cdblencke]

My name is Courtney
I am 43 and married for 6 years
I am a Mother of three, 5 year old CF carrier, 4 yr old Ava DDf508, 2 yr old CF carrier
Ava (DDf508) dx in utero
No PFT information at this time
Has a port
Has CF liver disease, pancreatic insufficiency
75 percentile for height and weight
Ava will begin pre-k in September, she is strong willed and compasionate
beautiful and funny....loves to dress up and dance
I am a stay at home Mom and want to learn all I can for the good of my family
Very involved with local CFF
Team Leader, Great Strides
Co-Chair for Kiss for a Cure, a Valentines gala benefiting the CFF
Co-Chair for the CF Family Advisory Board at our hospital

 

[tfontain]

My name is Ted... 43yo (that's 1967)... b'day in few weeks.. :^)
i have a great, understanding wife, & 2 great kids in college
CFer, CFRD (insulin pump for about 3 months now)
Chronic Pancreatitis, Chronic Sinus Infections/polyps, peripheral neuropathy pain in both feet/lower legs,

Diag at 2yo... Grad HS, then College with BSEE in Electronic Engineering
IT consultant (Delta Air Lines, IBM, etc..) some cool stuff.. Wall Street, etc..
now.. retired due to health... Very frustrating though...
My big excitment now... meeting the UPS man with my latest pkg of meds.. whahoo..

i help around our Christian Church.. sound, lites, etc.. keep busy.

Lots of things i can no longer do.. and that gets frustrating.
i have lots of sinus infections.. so can't even go outside much anymore.

Just had good friend at church with CF pass away last year.. in his 30's, wife and 2 kids.
My 16yo niece (with CF) had 19yo half sister with CF (Corrie), pass away about a month ago.
This week.. younger CF friend (Megan B.) .. just a girl (20-something) passed away...

Just makes you thankful for the days you do have.

 

[Sidewynnder]

My name is Caleb and I am 23.I'm a dude.I live near Atlanta in Cumming, GA.I was diagnosed with Cystic Fibrosis at birth.I was just diagnosed with CFRD (I knew I would end up with it at some point due to prior stints with steroid induced diabetes, so it was not a big shock or a big deal).I am engaged to a wonderful nursing student named Amber.I have a lot of hobbies but board games (I contribute to boardgamegeek.com a lot), video games, and comics are the big ones.My PFT's are in the mid to upper 70's on average.I graduated with a bachelor's degree in Middle Grades Education in May from North Georgia College & State University.I am currently making plans for graduate school (possibly History or maybe something with education) and then my doctorate after that.I want to teach at the college level at some point down the road.I will think of something else and update the post later!

 

[lizlas]

Hi Im 51, diaqgnosed with Cf in 2005 (45)
have had bronchiectatsis since 1977
Married in January 2006
Have a fantastic Terry Poo named Riley
Like to Garden
Luv to have BBQs
Health hasdeclined last few years
have had bouts of pancreatisis starting in Feb 09
Do not need enzymes. Bronchiectasis and infection is main problem
Do Ivs few times a year.
Want to travel but health holds me back

Live in Ontario Canada

 

[joyca23]

Hi, my name is Joyca and I'm a 23 year old girl from the Netherlands.
I was diagnosed when I was about 2 days old because of the meconiumileus.
I'm getting started with my new study in about a week and that's going to be International Events Music and Entertainment Studies.
I also play the drums so I guess I can say that music is a big part of my life.
I just got my first own appartment which I'm sharing with my three cats.
I'm sure I will learn some new English words here 'cause my CF-dictionary is filled with mostly Dutch words.

I guess that's about it then.

 

[anien2]

Mi name is Iñigo
I live in Spain
I am 35 years old
I am 6"10 and about 220 pound,
got married 3 years ago to the woman who makes all this make sense.
Dont have CF
Have two kids, Ane, 2 years old and Eneko, 3 months old
four months ago didnt even know what a pancreas was for
After a newborn test we found out that Eneko has CF
When we were told about the symptoms we realyzed that Ane also had CF
We have already cried, now we need to know what is all this about
The more we understand about CF the more questions we have.
Used to have hobbies and interests, now I only care about giving the medication at the right time and keeping my kids' lungs as clean as possible.
Used to be a funny person, I hope that comes back some day.
Sorry about the message tone, didnt digest the news yet.

 

[skifreek]

Im Gabe... 31/M

Diagnosed at a few months old

Live in CT, and frequent my place in VT for skiing/snowmobiling

5'9'' 170 ( i lift at the gym constantly, and eat a lot to keep up the weight )

PFT's are lower, (mid 40's, but still play in all my leagues without skipping a beat (baseball, softball, football, etc)

Take enzymes

blah blah blah blah

Not married, no kids (that i know of) <img src="i/expressions/face-icon-small-tongue.gif" border="0">

Forgot what mutation of CF i have... (dont really care to be honest)

Currently on the saline, pulmo, tobi/cayston every other month concoctions

 

[potterygirl]

I am Bonnie
I am 54 years old and was diagnosed at age 3
Has had a very mild case thus far till about a year or so.
Don't know what my PFT's are.
Lungs are pretty good- but my Pancreas is almost gone completely.
I take enzymes and that's about all I do.
I enjoy pottery a lot!! Takes all my stresses away!!
I own a small Logistics company.
Married for 4 years, never had children
I have 3 dogs though!!

 

[DKMH5413]

My Name is Kelsey
I am 20 (soon to be 21)
I am a female
I live in Indiana
Diagnosed at 3 months because I lost so much weight (born at 11lbs down to 6lbs)
I weight 150 and am 5'8"
I am a waitress
My PFT's are up to about 90 since just getting out of the hospital
My fiance and I have been together for 7 years and are currently trying to get pregnant
We have 3 kitties (Meika, Riley, Bently)

if you guys have any suggestions on anything feel free to contact me! <3

 

[Cleanair]

Hi, my name is Lois
I live in Hampton Bays, NY
I am 64 yeard old, diagnosed at age 57 (finally) after being miserable most of my life
Not diagnosed by a doctor. It was my daughter, Jennifer. she and her husband were starting a family and
they do genetic testing as a rule now and whe came back as a carrier so she she "Ma, this is why you're
always sick."
I must have a milder case or an angel on each shoulder, considering my age
My CF Center calls me the Poster Woman for Hope
I have the Delta F508 and the R117H
I am on Albuterol, Pulmozyme, Tobi (every other month,) Arithromycin M,W,F, Zenpep for pancreatic insuffiency
and Amitiza
I am a widow and I have a Schnauzer named Max
I LOVE to laugh
I used to be in the hospital 4 to 6 times a year. The last time I was in the hospital was 5/10!!
I am the mother of 2 grown children, a boy and girl, and 5 bueautiful grandchildren

 

[nvbrame]

My name is Nicki Brame
I am a female
I am 35 years old
I was diagnosed at 5 years old
I love all animals
Been married for almost 7 years to a wonderful man
No kids but one dog who thinks he is human
I live in Pinnacle, NC and my CF doc is Dr. Kussin with Duke (Absolutely love the man)
My PFT's are in teh lower 40's
I work full time as the city clerk for the City of Mount Airy
I love ice cream and japanese food
I weigh around 95 lbs and am 5'3/4" tall
I love going to concerts
I hate facebook
I was a shy kid but came out of my shell during high school and now you can't shut me up!

 

[IVWinchester79]

I'm Ineyda.
I'm a girl.
I'm blind. I have Leber's congenital amaurosis. I used to be able to see light and peoples' shadows. My vision's lessened, so now I can only see some light and some shadows.
Two brothers, one sister.
I'm currently 19, my birthday is in April.
I was diagnosed with CF at birth. Since my sister has it, they were getting ready for me just in case.
I had a colostomy for three months when I was a baby.
I was diagnosed with CFRD when I was sixteen. Close to my seventeenth birthday. Best birthday surprise ever, she says sarcasticly.
I weigh around 98-102 pounds. Depends on when you weigh me. It's odd, I actually eat way too much.
I'm 4 ft 11 in. I've been that size for many years.
My PFT's are okay. 70's and 80's.
People tell me I have a very sarcastic mouth. It makes them laugh.
I love dogs. Especially if they're puppies! And only if they're nice to me. Cats too, but not as much as dogs. We have one dog, she's a terrier mix.
I'm obsessed with the show Supernatural. Not kidding. My sister says I need help. Lol. We're a crazy fandom. It's where part of my user name comes from. I desperately want to go to a Supernatural convention. And one day to meet Misha Collins.
I'm friendly to you if you're friendly to me. I like making friends, I'm just too shy. So I end up waiting for someone to talk first.
I love music. Music is my life.
I love food! Food is awesome!
Anything else, just ask. I'm out of things to say.

 

[rtorres25]

My name is Rhonda.
I'm a wife and mother of 2 beautiful teenaged daughters.
I'm 46.
Conservative Christian.
Diagnosed at 38 after asking God for a miracle to heal my lungs.
It was a miracle, b/c I'd been fighting chronic lung infections my entire life without a diagnosis.
I have a mild case. Only 1 gene identified L206w. (finally, after years of being tested).
I live in MS.
I don't want to list my weight, b/c I don't have any pancreatic issues and I'm not underweight.
I'm 5' 6".
I am a computer programmer, blessed to work exclusively from home.
CF meds have changed my life. I'm more well than I've ever been.
Allergic to TOBI which makes things tough.
Do a lot of IV antibiotics. No port, yet.
Searching for others diagnosed as adults to compare notes.
Can't imagine being a parent of a child struggling with CF. I applaud you all.

 

[franzie2984]

Hi,I joined a few months ago but never introduced myself. I'm SarahFrom Michigan but live in ChicagoA am huge fan of college football, especially the University of Michigan I graduated from U of M (hence the football fetish) and then moved to Chicago 5 years ago for graduate school. I have my M.S. and now working on the PhD...blah!I was diagnosed at around 18mo because I couldn't gain weightFEV1 around 90% currently, typically over 100%; 5'5'' and 110lbsI like working out, I bike a lot around Chicago, and I like lifting weights, and I also do yoga (great for breathing).I have CF related DiabetesI am also deaf due to bacterial meningitis that I contracted at age 14I am a 27y/o femaleI am the only one in my family with CF and I had not formally met anyone with CF until a year or two ago. Cheers~

 

[AnnB]

Hi, new to this forum so:I'm Annie,25 years oldLive in Boston,Was diagnosed at 11 after complications from pneumonia5'6, about 130lbsPFTs hover around 70% but could definitely be better (when I find 10 extra hours a day to do more airway clearance it'll go up, I'm sure)Work full time, recently finished grad school (where my PFTs dropped to 40%, because full time school and clinic hours and no sleep do not mix with lung disease)Single-ish (shhh)Go running a few times a week, I'm pretty terrible at itLived in UK for a while, will probably be moving back for work in the next year or soHave 3 siblings and a massive extended family but somehow am the only one with CF (I got it like that)I really don't like salty foodsI really do like the beachI complain constantly about Boston weather (and traffic, and politics, and public transport...)Love to read, go out dancing with friends, travel, all the usual.

 

[JENNYC]

I'm Jenny.
I'm a girl.
I'm 32 years old.
I am a Christian.
Height: 5'8" Weight:150
I have a 6 yr old girl that was diagnosed w/CF at 2 yr
I have a 6 yr old with cf that has had 15 surgeries in a 2 year period.
I also have a amazing 9 year old son w/o cf and a wonderful 34 year old husband.
I have been married for 13 years to my high school sweetheart.
I am in the process of building a house to try to help with Abby's cf.
I have a 6yr old daughter with cf that is my inspiration.
I have a 6yr old daughter with cf that is the happiest little ray of sunshine ever.
I have the most amazing support group at home. (my mom, dad, 2 sisters, husband, and lots of other family )
I live in Texas and frequent Texas Childrens in Houston as my second home.
I have wonderful doctors and surgeons that have given me there personal cell phone numbers for any problems I may have with my princess.
I love that I have found this forum with all of these wonderful people.
My daughter absolutely love grapes and tomatoes (that is her birthday cake and icecream).
I love being a wife, mother, daughter, sister, and friend.
I live on a farm with lots of different animal friends.
I have a blessed life.
I still have so much to learn about CF.
I am an open book.