Who are you in a nut shell

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luckycharm

New member
who are you in a nut shell

Hi
My name is Leeanne
I'm from just outside of Boston, Mass.
I am 28
I have a 7 year old son
I've been married for almost a year but we've been together for 9 (in November).
I have a degree in cosmetology/esthetics
My PFT's are horrible and I'm hospitalized at least 3 to 4 times a year.
I'm very sarcastic and quick-witted
I love talking with people about CF. I do a lot of speaking during pallative care and cf conferences.
 
L

luckycharm

New member
who are you in a nut shell

Hi
My name is Leeanne
I'm from just outside of Boston, Mass.
I am 28
I have a 7 year old son
I've been married for almost a year but we've been together for 9 (in November).
I have a degree in cosmetology/esthetics
My PFT's are horrible and I'm hospitalized at least 3 to 4 times a year.
I'm very sarcastic and quick-witted
I love talking with people about CF. I do a lot of speaking during pallative care and cf conferences.
 
M

Melissa75

Administrator
who are you in a nut shell

Melissa
female
33
115 lbs, 5'4"
SAHM to 2, 5 and 6 year old;
Very part time freelance editor (romance novels, sci fi, fantasy).
I used to be a management consultant in finance. A coworker called my cough "the HIV cough".
New Jersey (raised in Virginia, school in Mass.)
I have bronchiectasis and a bleeding disorder (discovered through hemoptysis).
I don't have CF according to sweat and 23 gene-panel.
I was tested as a baby because of chronic cough and GI issues, then again when pregnant because in NJ, you get tested for EVERYTHING so you can't sue.
As a kid I was a big jock, mostly swimming, gymnastics and track. My FEV1 is still great as a result (over 100%). I stopped sports to be a nerd toward the end of high school and never stopped coughing. (Bad move eh?)
I used to think that there was no point exercising for the 5-10 days that I felt good between exacerbations, but now, I am going to have no excuses :)
Wet cough and several infections a year were my only "problems" until my second kid was starting to wean and I was 29. Miraculously, I went on to have a third child despite uncontrolled lung infections and constant uterine bleeding. I got an infection break for six months post-partum (the role of hormones in this is a mystery to me), but had to end breastfeeding for abs all the time. I do a small part of the CF routine (steriod and bronchodilator inhaler, neb saline, chest PT, acapella, mucolytics, allergy meds).
I mostly culture haemophilus but the pattern of bronchiectasis suggests a MAC infection.
I have learned a lot lurking on this site. My pulmo is learning from you all too :)
 
H

Hope2CureCF

New member
who are you

Howdy All,

I'm not new to this group, I've actually been a member for around 6 years or so, I just went poof for about 5 lol. so.......


My name is Jesse
I'm 25 years old
I was diagnosed at 4 months
I live in a tiny town in Ohio but soon to be Buffalo NY
My FEV baseline is around 94 (I know i'm lucky)
I'm a rare CFer who has to try not to gain weight (230lbs.. Once again I know i'm lucky)
I'm 5'10" (almost 5'11")
I LOVE fishing and poker!
I plan on becoming a pro poker player someday! (I really am that good)
My ex fiance also had CF she passed away at age 23 on Nov. 25th 2006 and is missed by all that knew her. I miss you Delisia.
I've had 14 Sinus surgeries, 5 bowell obstructions, Kidney stones 5 times, GERD since I was about 9, and arthritis for about the same amount.
The most important thing about me.... I love all of my fellow CFers
 
R

rainbowroar

New member
who are you in a nut shell

My name is Rach
I'm of the female persuasion. :D
I'm 21
I live in Sydney, Australia.
I was dx (diagnosed) at 14 weeks, failure to thrive and lung failure
I weigh around 50 kg (110lbs) and im 5'4.
I had a double lung tx in 2004.
My PFT's are 63%
I am a student nurse and lovin' it
I have a thing for birds
I have 2 half bros, 2 step sisters, and one normal sister. I'm the only one blessed with CF.
I have a partner, beautiful Megan.
I love music, and love singing, playing piano, guitars, drums. They are what makes me happy. :D
My sense of humour is sarcastic and dry.
I am currently experiencing a craving for M&Ms.
 
K

kelly1888

New member
who are you in a nut shell

my name is kelly 27 and my partner is called marc 28 we both carrie cf,and have one daughter age 7 called caroline-anne with cf.we live in belfasf in northen ireland.caroline-anne loves her hampster called 2pac.i am new here and cant beleave how brave the kids r on this site.my daughter gos in to hostpital once evry two months for two weeks for IV treatment.caroline-anne has just finished doing 6 weeks in the hostpital so its grate to have her home again. thats all i got right now hope to here from yous,and take care all. kelly the mom of caroline-anne age 7 with cf
 
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mollyj

New member
who are you in a nut shell

-My name is Molly
-25, F, unemployed and single
-Am crazy goofy, have a good sense of humor, am kind of ocd-especially with treatments
-Reside in Iowa City, Ia with my wonderful Mom and best friend Busterrr-(my dog)
-Diagnosed at 11 mos-failure to thrive-DF508 mutation
-PFT's are currently good-100%. Last year they were 87% and now came up.
-Have always inconceivably had good lung functions despite various bacterial infections in lungs.
-Had chronic UTI's(Urinary Tract Infection) and stomach problems growing up. I also had a very active childhood. Am of normal weight
-Colonized Pseudomonas in lungs and sinuses
-Diagnosed with diabetes in 2006
Surgeries pertinent to CF: infected tonsils taken out and then re-cauterized due to post-surgery bleeding-05'; Cholecsystectomy (gall bladder removed) bc I had gallstones and Pancreatitis-post-op I was bleeding internally bc the surgeon nicked my liver...so I had to have a blood transfusion and they had to go back in to remove blood clot-06'; sinus surgery-08'.
-Lived in Chicago the past two years to participate in volunteer program. I had to leave program early this year for health reasons
-I have bad low back problems..don't know if pain is due to herniated disc, spinal stenosis, or some sort of CF Arthritis?
-I do the vest daily, am on insulin, take Creon 10, Miralax,Zithromax, TOBI every other month, PT for my back and many more!!
-I am currently experiencing stomach pain
-I love the medicine they give you for bronchoscopies
-I love my family and hanging out with my niece, nephews, and sisters
-I have two sisters and three half siblings; none of which have CF. No CF in my fam. but me
-I love laughing, playing outside, enjoy movies, love to dance and watch dance, I sing a lot, TV shows I like are: The Office, Prison Break, So You Think You Can Dance, House, Grey's...
-I really want to have my own family one day. To meet a husband that is as committed as I am to family.
-I want to write a book; I love to read and write...I write some poetry
-Got my B.A. in Spanish from the U. of Iowa and am currently deciding about applying to graduate school for social work/counseling however my secret dream I would love to pursue is acting/performing.
-I love meeting new people and am open to anything; would love to chat with any of you!
-I also love learning languages-I speak Spanish fluently and love to travel
-I consider myself a strong young woman who has been through a lot. I am now just trying to learn how to cope and connect with others during the process.
 
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Natasha1287

New member
who are you in a nut shell

My name is Natasha
Im a female
Im 21 years old
I live in Massachusetts
I was born with cf
Im shy until someone talks to me so feel free to talk to me lol
My pfts are alright been better
I work full time
I have a puppy but i love all animals
I have a myspace account and facebook and im on aim a lot if anyone likes to talk threw those
 
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Catsmith

New member
who are you in a nut shell

Who amI? I'm lost. This is my first visit to this site, and I don't know what I'm doing. Two weeks ago, I had never been on the internet, and I'm finding it very difficult to figure out basic things. I've had very little contact with medical professionals in my adult life. When I was a kid, I remember the sweat test as being considered state of the art for CF dx (about 1960). I've had a couple doctors flatly refuse to believe I had CF. Their attitude was that CF patients simply don't live this long. I'd like to get my blood testedbut have not yet figured out how. I don't have a doctor, health insurance, or any of that. Just bad lungs, digestive system, and attitude. I have only limited and sporadic access to a computer, but I'll be back.
 
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AnD

New member
who are you in a nut shell

Welcome - You will find a lot of help on here with everything you mentioned! Once you get the hang of it, the internet is not so bad to navigate ;) .
 
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purpledoggy

New member
who are you

I just found this site so I figure I'll introduce myself
My name is Laurie
I'm a girl
I'm 28
I live in MD
I'm married to Danny (30 with cf), he is 10 months post double lung transplant
We will be married 10 years this September
We have one daughter who is 5 months old and cf free
We also have one cat
 
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billintheburg

New member
who are you

I am Bill
36 year old Single Male from Kansas City Missouri area
I was diagnosed around 12
I am terrible patient after going to specialist at childrens hospital till i was 17 i stopped when they kicked me out LOL
Went to college and got degree in Criminal Justice Administration and became a county deputy because they told me I could not do that with CF. Was Deputy for 12 years then left for better paying job.
Currently wiring specialist For GE.
Health was really good till about 2004 then things got bad enough to grab my attention.
I am finally getting on meds that I probably should have been taking for long time.
I am still in fairly good health (I think)
I must admit I have never met anyone else with CF so not sure how I compare.
any questions feel free to email me at billintheburg@yahoo.com
 
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Anny84

New member
who are you in a nut shell

Hello!

My real name ist Anika.
I'm a girl.
I was born in 1984.
I live in Berlin, Germany.
I have cistic fibrosis.
I work full time as an office management assistant.
I love to travel. My favorite place is USA. My next trip to Florida is in september 2008 :-D

bye!

Anny
 
T

Transplantmommy

New member
who are you

Name is Patti

Female

27 y/o

Live near Utica, NY

Diagnosed with CF when I was 6 months old

I have 4 siblings and none have CF

I am married for almost 6 years

We have a 2 1/2 year old son who we had to fight very hard for. I got pregnant when I was in the beginning stages of being evaluated for double lung and liver transplants. I was told by all of my doctors to abort the pregnancy and couldn't do it. Brady was born 7 weeks early and his right eye was underdeveloped so he has a prosthetic eye but other than that he is perfectly healthy!!

I had the very first double lung and liver transplant (all at once) at the Cleveland Clinic on January 31, 2007....just one year and three weeks after Brady was born.

My PFT's preTx were down to 15% and now are up to 93%.

I am currently still disabled from having my colon removed in June 2007 and having three more surgeries to repair and attach the small intestine to my rectum. I had a colostomy bag until March 2008.

I play the flute (and have been for 19 years now). Couldn't do it for a while there but am back to playing it and LOVE it!!

I love to cook.....favorite is lasagna or stuffed shells with garlic alfredo sauce and shrimp (instead of the traditional red sauce and meat).

There is so much more but can't think of it right now. I'll tell you all more about me later!!
 
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Gingerloveslife

New member
who are you in a nut shell

My name is Ginger.
I am 27.
I live in South Carolina.
I was dx at 11 because of chronic sinus problems.
I have a 29 year old sister with no CF.
I do not have digestive problems except lactose intolerance.
My FEV1 had been in the 55-60% range until the past two months when they have decided to plunge to 41-43% and stay there.
I have MDRPA.
I suffer from migraines.
I have panic attacks and anxiety related to hospital stays.
I married my high school sweetheart--We have been together for 12 years.
We have a five year old son named Toby--motherhood is so wonderful!!!
I love decorating and working on home projects.
I like riding four-wheelers.
My husband just bought me a Hummer H3 after my recent FEV1 dive-trying to cheer me up.
My family is extremely supportive.
I graduated with a BS in Biology with a 4.0 GPA but never worked because I got sick right as I was graduating--hoped to become a physician's assistant or something medical up until then.
I get depressed because of CF but it has made me who I am and I know that there are others with way more problems and I know I have God on my side.
Life is good.;)
 
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mysterygrl19

New member
who are you in a nut shell

My name is Heather
I am a girl (not a boy named Heather)
I am 19
Born in CT, raised in FL
Dx at birth
wt: skinny, ht: short
PFT's are 60-ish
Germs are: two strains PA, MRSA, B cepacia
I did work part time as a vet tech (LOVED IT)
College drop-out
Love music and the open road
Good book + comfy couch = happiness
I have a wonderful boyfriend
People tell me I am strange..but I say unique...
 
K

kitomd21

New member
who are you in a nut shell

My name is Katie
Mom to 3 week old Ellie w/CF, df508 and Owen, 1 & 1/2 yr old, no CF
Live in Sacramento area
4 Cats, 2 dogs, multiple fish, leopard gecko
Registered Veterinary Technician - most likely not returning to work due to Ellie's diagnosis
 
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Scars

New member
who are you in a nut shell

Just Joined today
My name is Tom
Im 35
I was born with CF
im post transplat 12 years, 13 in September
I live in NY
I have a dog and love Hockey!
I cant gain a lb if I tried, even after transplant, its frustrating as all hell
I ve tried supplements I eat like a pig, yadda yadda yadda
I found it interesting that a lot of the men here have children, just curious , was genetic testing done. I had heard it was near impossible for CF men to have kids.
 
K

KS12

New member
who are you in a nut shell

My name is Kaila.
I'm twenty years old.
I've never been on a CF forum before.
I'm not sure what my PFTs are anymore. They frighten me, though; they have to be in the low 30's.
I was in excellent health all through high school- Cheerleading, PFT's in the high 70's, until I learned that after I went to college, my little sister (who also has CF) was really taking a hit. I hardly took even a pill for almost 18 months after that, and have really struggled to get back on track.
I just got married last year; it saved my life.
I just got a g-tube and port placed.
I'm 5'2'' and weigh about 85-90; I still have about 20 lbs to go.
I want to have a baby, but it's my deepest fear that I won't ever be able to.
I have two cats, and I just adore them.
I'm secretly scared all of the time that I'll never bring my health up again, even if somehow I got a transplant.
I laugh a lot, though, and am pretty cheerful most of the time.
I was an English/Philosophy major in college; I just adore books.
My husband is in the military- so there's a lot of frustrating red tape with treatments and stuff.
I'm still trying, though. I just need to get better at it.
 
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