Who are you in a nut shell

[kbkbkb]

My name is Kay
I'm 43
Diagnosed at birth
Youngest of 6, 2 siblings had CF. They passed at ages 25 and 34
I'm the lucky one, being born later than the others, received a double lung transplant at age 27 (15 years, YES!)
Left my job as a chemist at age 34 when I Became legally blind after all kinds of weird medical complications
Now I write, take care of my husband of 13 years and my two crazy dogs, and do a little dog sitting here and there

 

[cheerfulpuppies]

I'm Dana
I'm a girl
I'm 34 years old
Height: 5'1" Weight:155
I live in New York, have lived here all my life, I currently live in a rural area on 5 acres.
My favorite food is fried chicken, homemade lumpy mashed potatoes, and sweet corn on the cob.
Some of my favorite activities include roller skating, swimming, spending time with my family, and of course I LOVE cats, I have had cats for the past 30 years. (Man do I sound old, LOL)

My mother is my hero, she never accepted the doctors statements that I wouldn't live to 5 yrs old, don't plan on college, ect. Instead she told me I was going to college, I learned from her working 2 jobs most times and going back to school herself for nursing, you just keep moving forward. She was there for me after I dropped out of college, help support me emotionally and gave me a roof over my head, after I moved out and screwed up, she let me move back home, get back on my feet and helped me get back on track. I had to fix my old academic mistakes and move forward. I now have 2 associates degrees and certification for the LPN schooling, which by the way was more intense and harder than nursing school.


I am an atypical CFer, I think, diagnosed as a baby but not hospitalized since I was 13 months old.
My PFT's have been in the 90's for as long as I can remember.
My CF mainly effects my pancreas, but have had sinus problems, only recently treated for the sinus issues, have had CFRD for the past 8 years but control it with diet, my choice, but may be starting insulin, once again my choice, chronic back pain but doctors don't seem too concerned. I guess if they don't feel it or it doesn't affect their focus they don't care to treat it.

I have had 3 surgeries, 1 thyroidectomy, 2 sinus, hoping to have another sinus surgery next year, hoping it gives me some relief.
I've had a lot of difficulties with doctors out of 8 of them I feel only 2-3 actually listen and really care about me.



I have a wonderful Husband whom I have been with over 7 years, married 2. (I wanted the house first, and I got it, LOL)
I currently work full time as an RN, but have done many jobs including dishwasher, waitress, bookkeeper, toll attendant, cashier, pet sitter, nurses aide, and LPN.

We are currently trying fertility treatment it get pregnant, no luck yet.

Currently my kiddies are my kitties. I have 7 cats and 1 dog. I would probably be that crazy cat lady if my husband didn't keep me so grounded, aka, always tells me no when I want another cat.
Oh and as you can tell, I talk too much.

 

[Natasha Grandall]

My name is Natasha
I'm 18, Birthday: October 5th
I'm 92 lb, 4feet 10inches tall
ENGAGED AND HAPPY.
diagnosed at 6 weeks old, wasn't growing but eating enormous amount of food.
I live with my fiance, Jordan, his parents, and his little brother.
I have a wonderful, sweet, precious, dog Princess Layah, Layah for short. Pitbull, mastive, american bulldog mix.
No job, Trying to get disability.
Online school.
Interested in being a Pharmacist.
I love movies, walking, dogs, MOSTLY BIG DOGS, (They cuddle better)
I have 1 brother (23), sister in-law, and 1 sister (19).
My fiaces parents thought it would be a great idea to find a blog I can talk to people that have the same problems as me. I have a hard time taking advice from people who don't know my situation. I also have negative thoughts about dying early and I often wonder why this had to happen to me. Although I would never change my life, it's hard to talk to people about this disease because they don't understand. I'm hoping this site will help me tremendously
Don't be afraid to talk, I love talking to new people

 

[Wldhrtd1]

well.. I guess it's time to introduce myself... I've been lurking for months!!

i'm kim and live in seacoast nh.. i'm a mom to 3 boys.. 26, 25 and 17.. older and youngest are both ddf508.. middle son is not a carrier.. our oldest was 9 weeks premature and was diagnosed at roughly 45 days of being in children's in boston..he had a MI at birth and after a routnine cf clinic visit, we were sent to a neurologist where he was also diagnosed with cerebral palsy at 8 months old.. he is w/c bound and now lives in a residential group home in northern nh... our youngest is 17 and I was 4 months pregnant when we found out his cf.. so far both are relatively mild.. so far..

youngest is looking at colleges, near home and away!!

i'm an open book about my life and the kids.. just came here looking for info and stayed for the info...

 

[outnumbered]

My name is Michele. I'm a mother of 3 with a dF508 and R117H 7T mutation. I'm getting so sick of hearing how "lucky" I am to have "mild disease." It's starting to catch up with me and not be so 'mild' now, and I hate that life is starting to get so hard. I have a Vest, but it's starting to feel like the only way it can help is if I hang from my ankles to use it - I just don't have the oomph I once had.
All of my kids are carriers, not affected.
I've recently moved to a completely new environment, and I think that I may have some new allergies that are making things worse...I hope so.
No one at work knows my diagnosis - they keep recommending pulmonologists, allergists, herbalists, and prayers. Very kind of them, but not going to help. I think they're afraid I'm contagious.
I love art & want to start painting again. I'd love to one day have a nice camera set up.
I've been a member for a while but I don't really post - that may change.
Thank you for reading about me

 

[CFjeff73]

My name is Jeff
Male age 40
I was dx at 4months after birth and under my birth-weight
I have the dF508 mutation
I was diagnosed with diabetes 6years ago and hope to reverse it
Medical Doctors Gave up on my life but my Mom didn't!
I have a brother with CF as well
I enjoy Computers, Natural Medicine and Magic just to name a few things.
I have a beautiful companion and daughter in which I consider my wife and child, we've been together 10years.
I live on disability as I quit my job a few years back after being a waiter for 25years.
I am obsessed with truth and getting to the bottom of a conspiracy, after-all we are in the age of information.
I don't have much but I'm blessed to live in a great area in which I grew up in w/all it's modern conveniences.
I am a deep spiritual person but not committed to any particular religion and enjoy the new age movement.

Okie Dokie peeps I look forward to being a great asset to the CF community and thank my peeps in return! (L)

 

[occupyjapan]

I've been posting here for years, but never introduced myself.

I'm Seth. I'm 29. I'm a (stuff I get paid for) veterinary technician, web developer, musician, freelance writer, amateur luthier, (stuff I don't get paid for) skeptic, atheist, socialist, geek, gamer, etc. In a very happy relationship. Diagnosed at age 4. I have homozygous DF508. I've always had mild symptoms. I can be abrasive on these forums, but generally in response to people pushing hokum, woo, pseudo-science (homeopathy, naturopathy, etc.). I don't take kindly to people peddling false hope and snake oil (sup, CFJeff?) to people who may be very scared and desperate.

 

[morriss]

Skip
Male 35
My wife is a df508 carrier and healthy and I carry a 5t variant which is not a cf mutation, but when paired with a cf causing genes can cause CRMS (CFTR- Metabolic Syndrome)

I have three children. My oldest girl,who is 8, has both pairings, a son, who is soon to be 4, also with both pairings, and a little girl, soon to be 2, who does not have df508 and may or may not have the 5t variant. We visit a CF clinic every six months. My children have not showed any symptoms yet. Sweat tests were in the unknown zone, but all throat swaps and fecal test check out fine. We are 1 of only 2 families with this type of diagnosis at our clinic.

Just recently in December I had my gall bladder and spleen removed due to complications from my pancreas. I recently found out the I am also a carrier of the spink 1 gene which is not related to CF, but can cause unexplained pancreatitis.

In addition, I have a brother who does have df508 and the 5t variant. He is 33 and healthy.

 

[RobinB29]

My name is Robin
Diagnosed at 6 months old, DeltaF508 x 2
Two sons, one with my first husband another with my second plus two wonderful stepsons.
My husband is military, I am not currently working but hoping to go back after I finish my degree.
I worked in libraries for ten years until the dust/contact with people got to be too much. Also, arthritis sort of sealed the deal for me.
I have Celiac disease as well, (I know right- how lucky could one girl be! lol, I also have a cross-reactivity to dairy and soy and now a general mistrust of my immune system and food proteins.
I have dogs and cats, I call them the children that listen.
I enjoy reading, writing, spending time with my family, research, target shooting, cooking and baking.
I've had kidney stones, appendectomy, gall stones and removal of gallbladder, two sinus surgeries, a port placed in 2010 and my FEV1 is currently 78.
I am a no-nonsense say what you mean, mean what you say kind of person and I intensely dislike bullies, BS and injustice. I am finishing my bachelors right now in human services but plan to get my master's in criminal justice and devote my time to being a private investigator and thoroughly stomp on cheating spouses, bad parents and other societal ills. I started out wanting to be a therapist and then I realized that while I care about people and want to make the world a better place, I don't have much sympathy for whiners so I thought I would take my online research skills, lust for truth and desire to rid the world of injustice into a career where I actually could do something about people's issues besides just listening. (Also, if you are making a living off human misery and depravity I doubt you will go hungry.) My husband is joining me in this plan, after he retires from the Army, and I look forward to working with my best friend.
That's me in a nut shell.

 

[juliervacca]

I study your message and it took me extraordinarily well and I think quite a bit of this details will be handy to all people else. I have like all of you've got a little site, and it builds about the design and style from the web site. When you might need another person, please head to my online site to a bar .

 

[juliervacca]

I go through your message and it took me particularly well and I think a good deal of this material will be helpful to most people else. I have like all of you might have a smaller web page, and it builds to the style from the blog. If you should really need someone, please have a look at my web site to a bar . elegant website design

 

[Angelo]

Angelo DiStefano
53, married 20 yrs, living in South FL
BS degree from UT, Knoxville, and MBA from Vanderbilt
dx at 6 months old, lost baby brother about a year younger. he died at 3 months of age and already had feeding tubes.
D508 and PR1066C
6'1" and 150 to 155 pounds
love to snow ski, water ski, and dance although can't do them anymore. Still hanging on to my water ski, because I plan on skiing again.
fev1 currently less than 20%, but I have an ace up my sleeve
I got rid of MRSA with RIFE (PEMF) technology
I have had 2 adult stem cell procedures that brought me back from the dead, and got me off oxygen by Feb of 2013. Started dancing again.
Now I need more treatments, about 10 months apart. but lack of funds has prevented that, so I have been going backwards for the past year.
back on oxygen and trying to raise money.
Have not needed a tune-up in 3 years, since the first treatment. I was doing tune-ups 4 x a year before that and hurtling toward death in 2011.
But now I am 3 years past my last funeral date. Praise the Lord.
I am serious about going skiing again. The doctors have been giving me (and all of us) a death sentence my whole life, but I refuse to accept it.
I lived most of my life as if I had nothing wrong with me. You can read part of my journey about the adult stem cells on my blog angelodistefano.com

 

[ianpett]

My name is Ian, 45 years old.
I was only diagnosed 6 years ago, when I found out I was unable to have kids.
My CF Clinic is in Toronto, but I live in Hamilton.
So far I am in not bad health, very fortunate in that regard (although I do have bronchitis this week)

I am also a portrait photographer, and I have been contemplating starting a series on adults with CF.
Maybe I'll post a separate thread and gauge any interest. Hope many of you (like me) would our story to be told.

 

[Cubs fan Brian]

My name is Brian, 46 yrs. old
Diagnosed as an infant back in 1968.
I go to the University of Iowa for my CF Clinic
F508del homozygous
On social security disability since 2005
5'10"; 170 lbs.
Have put on about 35 lbs. in last two years. Apparently my previous doctors didn't have me on proper amount of enzymes
Diagnosed as diabetic about two years ago, not really having any problems with that

Been hospitalized at least 20 times for bowel obstructions, had one surgery which was pretty much uncalled for and it took me a long time to recover.
My lung functions have stayed stable the last couple of years but aren't very good, FEV1 is 36%

I love sports, just wish I was still able to participate in them. Somehow I have turned into a cat person. I adopted one about 7 years ago and I now have 7 of the critters, love 'em to death. Gives me a bit of a way to get my mind off of my health by taking care of them.

Let's see, what else is there? Bachelor of Arts degree from St. Ambrose University in Davenport, Iowa. Did graduate work at University of Northern Iowa and University of Kansas but didn't get the Masters.

Never married, no kids

Have vowed that I will live long enough to see Charlie Brown kick that damn football, the Cubs win the World Series and to be around when they find a cure for CF.

 

[tattertott]

My name is Taylor Malanchuk.
I am 22 years old and I live in British Columbia, Canada.
I was diagnosed at birth due to a bowel blockage that required sugery.
I am double Delta F508, 5'2 and 95 pounds.
I have had two bowel surgeries, an ileostomy and a sinus surgery.
Photography and anything in the visual arts area is what I love to do.
I love to read. I grew up loving Harry Potter.
I am very adventurous, I love going on walks, hikes, traveling, anything.
I am an adrenaline junkie, I'll go on any ride lol
I am a very loyal friend despite me being really shy at first. I love making people laugh!
I love listening to music every day, Coldplay is my fav. band. I also play guitar.
Follow me on instragm! Personal - @tattertott and my awareness account @cf_awareness.

 

[JakeS]

What type of nut are u?

Hi, my name is jake s.
I am 38, & a sunflower seed
Was diagnosed at infancy by mother(worked as charge nurse in cf clinic)
Was not diagnosed by doctor until 9 months
Pancreatic insufficiant
Relativly normal lungs
Bad sinuses
Extreme osteopenia, related to malabsorption, lost most of my teeth(wear partials)
Vegan
Live in colorado
One cat, i am a hippie
Enjoy cooking, hiking, reading, writing
Love music, play guitar, and piano
Widowed at 30
Currently on disability, hoping that will change soon.
Enjoy life most when not in extreme cold, or heat
But if i have to choose, cold
Extremly grateful to be here
Also plan on being on this planet long enough to see a cure for CF, and all protein misfolding diseases.

 

[donnamarie1217]

My name is Donna
Girl
I am 48
I was misdiagnosed for 42 years
I had pneumonia at 2 months old
Several cases of pneumonia throughout my life
Pancreatic insufficient
I have one daughter without CF (Thank God)
I live in California
Divorced
I love nature especially the ocean
I love singing
I make sure to laugh daily (medicine)
I believe in natural healing
Retired at 43 due to hospitalizations
I weigh 128 and 5'2
I have had 3 sinus surgeries
I like traveling, reading, music & photography
Firm believer in living for your dreams
Spiritual

 

[anna47]

I'm Anna! Hi there!

I turn 24 in a few weeks
grew up in Norcal, but I currently live in DC
I was diagnosed at birth (my older sister has CF, though my younger sister is only a carrier)
double delta 508 (bam bam!)
graduated from an Ivy League institution last year
currently an early childhood teacher, but only for a few years - seems impractical in the long run...
my current career goal is to work for an education nonprofit, foundation, think tank, etc.
I sang opera in college, though singing through mucus could be hard at times
currently single, but I intend to get married in the next 10 years and have kids (my 1st grade class of 22 is enough for the moment!)

5' and 100ish lbs
my PFTs are consistently good, but I struggle with CFRD (if you wear an insulin pump, I'd like to hear more! I'm debating taking this step, but I'm very intimated...)
I also have had a g-tube since age 7, and I did have sinus surgery last year as a proactive measure.
I have never been hospitalized for CF, however I had a mysterious issue with nephrotic syndrome this year! it impacted my life very suddenly and the trigger is unknown. (If you have experienced nephrotic syndrome in correlation with CF, I'd love to hear about it.)

I have never joined these type of boards before, since I have always relied upon my sister for support.
she and I are fortunate to be in relatively good condition, but I have always been curious about other people with CF (since she's the only one I've ever met)

thank you all for sharing your stories!

 

[SuzanneNez]

Hi - I'm Suzanne (you can all call me Grandma; you're all so young!). I'm 74 years old, living in So. California, and was just diagnosed with Adult On-Set CF after an otherwise healthy and active life. I'm still healthy & active, but am concerned about what lies ahead. I received the Delta F508 gene from my father (whom I never knew) and it remained inactive until 3 years ago when I suddenly started coughing, and have not yet stopped in spite of using the vest 2x daily and Pulmozyme 2x daily. I love to sail and to read, am 5'10" and weigh 135. I'm far from the failure to thrive type! I have 2 grown children and 7 grandchildren, along with a wonderful husband of 51 years. I'm currently waiting to get an appt. at an Adult CF Center near me -- what luck that I don't have to travel far to get to one.

 

[heychelsey@gmail.com]

Hi my name is Chelsey
I'm a 20 yr old girl and was diagnosed as an infant.
I live in Colorado and stopped working for health reasons, and school. My last day is on Monday! Woohoo!
I also weight around 95 pounds and I'm 5'2. PFT's are in the lower 60's (not happy with)
bacon is the greatest thing on earth. I have a pretty serious boyfriend and we have a dog and a cat together. (They're a total blast! The cat, who's 4 months actually tries nursing on the dog.. strange but hilarious!)
I have a 5 year old sister who I love spending time with, the age gap is pretty big so I want to get as much time with her as I can.
I have a thing for shoes, mainly rock climbing shoes, but any others will do too.
Reading and writing are my favorite escapes.