Who are you in a nut shell

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windex125

Guest
who are you in a nut shell

Hi to all I became a member tonight, I joined a ew yrs. ago but just read and didn't post, sorry. I am 53 my name is Patricia and I live in NY I went into the adult section and clicked. I am new at alot of computer stuff other than reg. email and Amazon Shopping. I too was dianosed as a baby failure to thrive. Hope to hear rom you all.
 
W

windex125

Guest
who are you in a nut shell

I just tried to send a little info on myself but not sure it went though/ I am female 53 my name is Patricia and live in NY. have many issues, but deal with them one at a time. Hope eeryone is feeling good tonight
 
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uwrong1053

Guest
who are you in a nut shell

I'm new to this so here goes:
My name is Ulanda yes Yolanda with a U
I'm a girl (all woman)
I'm 32
I'm black
I live in NY
I was diagnosed at 12 yrs (they initially told me I had asthma said CF wasn't commom in BLACK people)
I have a 3 sibling all whom are CF free
I'm a baby snatcher (I work for children services and, love love my job)
I am 5'7 and 3/4 " and weigh 121 usually 145 but just got sick
I've only been hospitalized now about 4-5 times 2 of those times was this year
Only my closest friends know I have CF everybody else thinks I have a re-occuring cold
I'm still in denial i think but at least now for the past 4 months ive been taking my meds almost religiously)
I don't know what my mutations are
I'm not hip to the CF lingo and dont know what my PFT's are
I don't take that many meds - I'm fortunate (not yet at least)
I don't even take the meds that I should until I'm threatened by the doctors to be admitted (horrible, rite?)
I want a family but am curently single (i can hear my clock ticking (LOUDLY)
I am on here for guidance and support so that I can get motivated to be healthier before its too late
 
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TwistedTanya

New member
who are you in a nut shell

My name is Tanya
I'm a 29 yr old female w/cf, sinusitis, osteopeana, slight scoliosis, pancreatic insuf.
My FEV1 ranges around 28-30% (I am planning on getting listed on the lung TX list by the end of this year)
02 at night and when exercising
Surgeries - 1 sinus, appendix removed, and wisdom teeth removed
Has a blood tansfusion a year ago
I'm 5'4" and weigh about 105 - 110
I was diagnosed at 6 months from failure to thrive.
I live in St. Petersburg, FL with my boyfriend while I try to sell my condo in Orlando. All my friends are there and I miss them dearly but I am better off here.
I have been on disability for about 5 years since my PFT's have been in the 30's that whole time until now.
I graduated college FINALLY in 2006 with an A.S. in Multimedia Graphics Technology/Design
I've been with my wonderful boyfriend for 2 and 1/2 years.
No human kids, just my dog daughter, Leia (cocker spaniel).
I've had the mumps! That sucked! Pneumonia a few times, Aspergillosis, tested positive ONCE for MAC, always psuedomonas......currently my strain is resistant to everything but Colisitn!
Finally got brave enough to get a picc line a little over a year ago when hospitalized and wish I'd had tried it sooner.
Wasn't hospitalized until my 20's.
I've had two times in my life where I was so sick my PFT's dropped at least 20% and it took several months in and out of the hospital until I was stable and the PFT's improved. Colisitn has been a life saver for me.
I love metal music and goth/industrial. I used to go out to the local bar/club to see live bands play almost every weekend and have a few drinks but there is too much smoke and my lungs are too bad now.
I still enjoy going to the boardwalk and watching the dolphins swim by in the inlet. I love riding in boats and enjoy the peacefulness of the ocean. I love animals. I love art and music. I love steak and sushi.
I have 6 tattoos and many piercings (Dr. says the piercings have to come out everywhere except my ears before TX for infection precautions . He said at least with my ear, if it gets infected they can cut it off, hahaha! )
I have a few relatives here in FL that are a bit of a drive away and the rest are mostly in Ohio.
I hate cold weather, always makes me sick!

My most miraculous story:
My appendix burst when I was having my 13th b-day slumber party. My GP doctor said it was probably just a stomach bug that was going around. We went and saw him the next day or so and he checked me out and stuck with his original diagnosis. I was in such immence pain as it was my appendix! After a few days, the pain subsided. I was ok until a month later and the pain came back again. This time I went to the hospital and had some testing done.....one was a barium enima, ugh! They still couldn't figure out what it was so I went to my CF specialist in Atlanta, GA at that time. They did more tests and thought it might be a cyst on my ovaries, or some other things I can't remember. So they did exploratory surgery. That's when they discovered my appendix had ruptured. The reason I didn't die and was ok for so long was b/c all the mucus from my CF had formed a kind of seal over the rupture and stopped the poison from killing me!!!! How about that! The disease that is slowly killing me actually saved my life!
Ok, this has gotten long and I've covered the basics so I'll stop there, hehe.
 
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NIUcfer

New member
who are you in a nut shell

My name is Colleen.
I'm a girl.
I'm 19--I'll be 20 in July.
I live in IL.
I'm just finishing up my sophomore year at NIU, studying elementary education.
Just moved into the adult clinic of University of Chicago summer of '07 and I love it there.
I have a boyfriend who is the most wonderful and most supportive guy I know. His family supports me more than mine does and it's amazing!
FEV1 is around mid-70s which is pretty low for me, but my doctor thinks it might be because of allergies, so we're trying to get those up!
I'm 5'4" somewhere between 105-107lbs.
I have one copy of the G551D mutation, the other is unknown.
I'll be participating in the Great Strides walk May 18th, 2008 in Chicago along w/ my friends & family. I've been attending those walks since I can remember and I think they are an amazing way to raise money and awareness.
Just last summer my chest PT has been kicked up to twice a day which was and still is hard for me to do, but I know it's worth it because I haven't been in the hospital since I was born.
I love to laugh and surround myself with people who make me happy.
I'm ready to get into the "real world"--can't wait to get married, have kids and have a career.
My favorite food is mac & cheese, chicken and pretzels (but not all together!)
I wish I liked to exercise more.
 
W

windex125

Guest
who are you in a nut shell

Hi to All I am new to the site I am 53 young woman. I tried posting previously but didn't think it went through?I am from Long Island, NY I have a double medport in my right shoulder for IV's it is the best thing I had done. Truly makes doing IV's at home so easy. Feel Good everyone
 
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420

Guest
who are you in a nut shell

Aloha, my name is Danielle and I just joined today!
I am 20 years old
I was born and raised on Maui where I still reside (duh!)
I was diagnosed at four
Was diagnosed with diabetes at 19
I weigh about 100 lb. and am 5'3"
My pfts are mediocre and I think could be improved
I am always tired and sometimes depressed, yet at other times on top of the world.
Have been hospitalized too many times to count but at least 3 times in the last year.
I love: Hawaii( the land, the culture, the sunsets, the ocean, the sand in my toes, the waterfalls, the mountains, the surf, the people, everything except the people who take it for granted!)
I also love reading, writing, cooking, baking, singing in the car where no one can hear me, dancing, cruising with my friends, swimming, collecting sea shells, paddle boarding,camping, psychology,cuddling with my boyfriend, good movies, and a whole lot more!
My mom is the head pastry chef at Mamas Fish House
I am studying journalism at MCC
I hope to go away to O'ahu or the mainland for my bachelors and masters degrees
Sometime I hate having CF because people think your "different"
I am also a liscened Esthetician and give awesome facials, massages and waxing!
I didn't start really taking my disease seriously until I was 85 pounds and found out I had diabetes
I have never met a single person with CF
Most people that find out about my illness they don't even know what it is, I have a practiced monologue in my head already.
I am infatuated with why people do the things they do, anything to do with psychology and sociology.
My favorite foods are real NY pizza, fresh fish, fresh veges and rice are at the top
But I have a sweet tooth so most baked desserts,li hing mui gummy worms, and shave ice(a local thing) are my worst enemies!
I also am very involved in improving the environment and civil rights. I had a chance to go to the U.N. this summer with my political science class but couldn't because Im sick.
I am looking for support, advice and friends!
Aloha and Mahalo
 
J

JazzysMom

New member
who are you in a nut shell

Welcome 420. My sis, BIL & nephew lived in Hawaii for years. My nephew was born there. Welcome!
 
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420

Guest
who are you in a nut shell

oh and I forgot... I HATE OUR PRESIDENT and cant wait for him to be out! I really hope at least one of the dems get in. Not that I really can call myself one, I just cringe at the thought of Iraq continuing on for another eight years!I dont know if thing will change with Obama or Clinton but Im certain they wont with um..whats that guys name?(lol)
 
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tlcquiltnut

New member
who are you in a nut shell

Hello,
I am Tammy Calvert, 57 years old with CF. I have lost 2 brothers from CF...
I love to ride my horse when health permits and love to quilt...
I don't have many CF friends anymore as they are all gone...would love to hear form anyone my age....Thank you.
 
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tlcquiltnut

New member
who are you in a nut shell

Windex,
I saw your post and thought I would let you know I am 57 years old...have only met on other person close to my age...would love to compair notes sometime...Tammy
 
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Fancymushroom

New member
who are you

I'm Michelle
nearly 19 yrs old
I live in England
I'm 5,1 and i think 98 pounds
I'm a student
I love running
I have a thing for peanut butter (not in a nutshell)
I have a boyfriend
I have nearly 90% lung function :D
I like the word chillax.
 
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BonnieD

New member
who are you

I too am a parent. My name is Bonnie and I am a senior citizen. We now live in St George, UT but used to live in southern California. Most of my kids care was at CHOC in southern California.

I had three children and two of them had cystic fibrosis. My daughter Cathy was born in 1968 and my son John in 1969. They were both diagnosed shortly after John's birth. Cathy was being treated for celiac disease and John had failure to thrive.

I was told they would most likely live to be fifteen of sixteen years old. At that time we were very involved in the local CF chapter in Whittier, CA.

Cathy began being hospitalized at 16. She married and had a daughter, Katie. Katie is now 19 and of course, a carrier. Cathy went through medical hoops to keep herself alive. In 1992 we were told that without a lung transplant she would live no longer than two years. She was put on the list even though she really was not sensitive to as many antibiotics as they would have preferred.

In August 1994 her 26 year old cousin and I donated a lobe of our lung to her at USC hospital. She had six beautiful months and I will always cherish them. She got a bad bug that antibiotics would not cure and became septic, she passed in March 1995.

She worked with the southern California chapters of CF and was very involved in fund raising. She was at a lot of 65 Roses events with the LA Dodgers.

John's disease was almost always digestive. He looked to have a long life expectancy for his disease. In 1999 on my birthday, he was the first CF patient to have gene therapy. This was done at Stanford. John died in his sleep five months later at almost thirty years old. While John should have lived longer, he helped the CF cause and could never have done all the things his sister did to fight his illness.

It was a great joy to have and raise these children. They are forever in my heart and I think of them every day. I am happy to see that the life expectancy has been extended and lung transplants have come such a long way. If I can ever help by talking to anyone, I am here for you.

I am a huge Nascar fan and was pleased to see Denny Hamlin mention fund raising for CF. I like him alot, although my favorite driver is Michael Waltrip.
 
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BonnieD

New member
who are you

I also forgot to add something, we are in love with Maui and hope to move there someday. I just need to win that dang lotto....
 
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annieop86

New member
who are you

My name is Annie
I live in northern California
I am a full time college student (primatology major, I study monkies and apes)
I work in a restaurant
I have cystic fibrosis, cystic fibrosis related diabetes, and cystic fibrosis related osteoperorsis (the trifecta of crappiness)
I love my family more then anything
I am currently single (wink wink nudge nudge)
I hope to one day become a public high school teacher
I am convinced that I am not going to have kids, I'm going to have dogs
I love my friends
I am a hopelessly protective romantic
I hate rollercoasters
My 6 year old goddaughter is the smartest person I know
I love suprises
I love people... for the most part
I suffer from insomnia, depression and anxiety, yet I am one of the happiest and friendliest people you will ever meet
I am freakishly loyal
I am a natural care taker and am protective as hell
Send me a message if you ever want to talk, cause I always want to talk but I love to listen even more!!!<img src="i/expressions/heart.gif" border="0">
 
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carriepathy

New member
who are you

Hi
My name is Carrie - I'm 40 years old.
I'm new to this site and to cf - mum to Raphael, aged 14 weeks and dx at 7 weeks (failure to thrive).
We live in Switzerland, near to Geneva. I'm British, my husband is French - we've been together for 10 years, and have another child, Jasmine, aged 3.5 years w/o cf but asthma, ecsema and fits.
Raphael is DF508 and 3659delC.
I don't know what all the other anacronyms are (is there somewhere I can find out?) - it's all very new and just learning about the condition.
Some days Raphael struggles with his digestive system, some days he wheezes, but usually he's the best little baby boy and full of smiles.
We also have a black lab called Maya, aged 1.5 yrs - she drives me crazy, but I wouldn't swap her for the world.
I work in communications - due back at work soon and fretting over child care.
I don't know any other cf parents so this site is great.
 
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DanaInSeattle

New member
who are you

Hello-

My name is Dana (I'm the boy kind of Dana)
I'm 39 as of this posting
I was diagnosed when I was 13 (hadn't started puberty, constant digestive problems etc)
I don't know which flavor I have off the top of my head, though it has been determined
I am reasonably healthy
I'm 6' tall, actually broke 200 lbs for a while, but now I'm back down to 190ish
I live in the Seattle area
Currently I use enzymes, Pulmozyme and Saline, Omeprazol and an acapella

This is my first attempt at reaching out to others with CF. I don't know why I've put it off so long, though I've been accused more than once of being 'in denial' about my condition. I'm here to learn from all of you, and share if I feel I have something to offer in return.

Anyway....nice to meet you all.
 
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kayleesgrandma

New member
who are you

Wow welcome to you all...What sectacular stories you all have. I look forward to getting to know you all:D<img src="i/expressions/heart.gif" border="0">
 
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Brad

New member
who are you in a nut shell

Hello Folks
I am Brad
I am 51
DX at 8 years old.
I am 5'10'' 225, I have been lifting long before it became stylish, lol

I know I have replied to this thread already ??
I was reading some of these and am very happy to see
Cfers in there 30's 40's and 50's.

I come from a family of 5 children, 4 of us have Cf.
My oldest Cf brother passed back in 1972 at the age of 27.

The oldest brother with cf will turn 60 this july..
 
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sweetpea21

New member
who are you in a nut shell

Hello,
My name is Jenn...
I am obviously a female...
I live in MS...
I am 20 yrs old...
Still waiting for my prince charming...Ive kissed enough frogs already!!!
I am 5'6 and weigh 140 lbs...
Dx with CF at 4 months...
Dx with CFRD at 13 yrs...
FEV1 48%
I have a port...
I had my first pneumothorax in April...
My mutations are G542X and R1162X...
I am a Christian...
I am a full time student...I will graduate in May 2009...
I enjoy doing cardio and pilates...
I love mexican food, orange sherbert ice cream, and anything else that tastes like fruit...
I am addicted to myspace.......and facebook....and now probably this...
 
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