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Thread: Who are you in a nut shell

  1. #751
    Junior Member
    Join Date
    Mar 2006
    Posts
    10
    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!

  2. #752
    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.

  3. #753
    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.
    Last edited by CFsonofaCFdaughter; 01-24-2018 at 05:28 PM.
    Male (but gender fluid).

    My mother was F508del/F508del and I'm pretty sure my father was a carrier of d1152h (although he might have been homozygous d1152h).

    So I'm F508del/d1152h diagnosed at age 49 several years after my mother died. First symptoms at 26, chronic pancreatitis at age 27. At age 29 a persistent cough and "over active mucous membranes" was what the doctors said.

  4. #754
    Junior Member
    Join Date
    Jan 2018
    Posts
    1
    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.

  5. #755
    Junior Member
    Join Date
    Mar 2018
    Posts
    2
    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?

  6. #756
    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

  7. #757
    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....

  8. #758
    Junior Member
    Join Date
    Apr 2018
    Posts
    2
    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!
    Last edited by wmalipur; 04-19-2018 at 05:02 PM.

  9. #759
    Junior Member
    Join Date
    Apr 2018
    Posts
    2
    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!

  10. #760
    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

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