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Thread: Who are you in a nut shell

  1. #661
    Junior Member
    Join Date
    Sep 2012
    Posts
    10
    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

  2. #662
    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.

  3. #663
    Natasha Grandall
    Guest
    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(:

  4. #664
    Wldhrtd1
    Guest
    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...

  5. #665
    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

  6. #666
    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)

  7. #667
    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.

  8. #668
    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.

  9. #669
    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.

  10. #670
    juliervacca
    Guest
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