Who are you in a nut shell
- Thread starter littledebbie
- Start date
who are you in a nut shell
hi - interesting site - sure wish this was available to me almost 3 decades ago when my daughter was diagnosed.
I have been married for 35 years - have almost always been a working mom.
In my early years dealing with CF, I found it helpful to talk to other parents, especially those with older children. Later, those with CF were the most insightful as they were the ones actually living with CF We, as parents can only ever walk in their footsteps - not in their shoes.
any other parents of older adults on here?
hi - interesting site - sure wish this was available to me almost 3 decades ago when my daughter was diagnosed.
I have been married for 35 years - have almost always been a working mom.
In my early years dealing with CF, I found it helpful to talk to other parents, especially those with older children. Later, those with CF were the most insightful as they were the ones actually living with CF We, as parents can only ever walk in their footsteps - not in their shoes.
any other parents of older adults on here?
who are you in a nut shell
My name is Eric
I am a boy
I am 37
I live in Minnesota just outside of the Twin Cities
I was dx at 27 years old (in 1998)
I weigh 184 lbs 5'11"
I have been married since 1996
I have two sets of twins (1st set girl & boy 2nd set 2 boys)
I work for Mn/DOT as a Construction Engineer for Metro District
I like to read, genealogy research, ride bike, play with my children, surf the web.
I love my family
My PFT are very good (apparently I have large lungs)
I can't remember my mutations
I have lived a great life and have not had much complications with my CF. Most of my problems are with my sinuses.
Only on Advair and Nasonex and multi vitamins for now and hopefully for years to come, will see.
Enjoy.
Eric
My name is Eric
I am a boy
I am 37
I live in Minnesota just outside of the Twin Cities
I was dx at 27 years old (in 1998)
I weigh 184 lbs 5'11"
I have been married since 1996
I have two sets of twins (1st set girl & boy 2nd set 2 boys)
I work for Mn/DOT as a Construction Engineer for Metro District
I like to read, genealogy research, ride bike, play with my children, surf the web.
I love my family
My PFT are very good (apparently I have large lungs)
I can't remember my mutations
I have lived a great life and have not had much complications with my CF. Most of my problems are with my sinuses.
Only on Advair and Nasonex and multi vitamins for now and hopefully for years to come, will see.
Enjoy.
Eric
LonniesMom
New member
who are you in a nut shell
I'm Lonnie's mom. Lonnie was diagnosed at 21 and will be 40 on sept. 13. He was in good health until about 6years ago. College,good job, wife, son(18) new home. Then CF really took hold. Pancritites, upperleft lobe removed,sinus suegery, heart strainer for clots,multiple infections,pneumonia too many times to count,and pain killer addiction.Then he went to rehab,lost wife and house,but has custody of wonderful son(joy of his life,honor student #13 in class of 283 headed to Texas A&M engineering full ride).
Lonnie and Brandon live with mom and dad.Lonnie is almost off methodone(3)yrs. Gone from 100mlg a day to 20mlg in 6 months time. Will be free in about a month. They have already started testing to get him on the transplant list. A lot has happened in 6 years.Lonnie has gone from 172lbs to 118. Its a battle every day,but with the Lords help he will be strong and victorious in ths battle.
I'm Lonnie's mom. Lonnie was diagnosed at 21 and will be 40 on sept. 13. He was in good health until about 6years ago. College,good job, wife, son(18) new home. Then CF really took hold. Pancritites, upperleft lobe removed,sinus suegery, heart strainer for clots,multiple infections,pneumonia too many times to count,and pain killer addiction.Then he went to rehab,lost wife and house,but has custody of wonderful son(joy of his life,honor student #13 in class of 283 headed to Texas A&M engineering full ride).
Lonnie and Brandon live with mom and dad.Lonnie is almost off methodone(3)yrs. Gone from 100mlg a day to 20mlg in 6 months time. Will be free in about a month. They have already started testing to get him on the transplant list. A lot has happened in 6 years.Lonnie has gone from 172lbs to 118. Its a battle every day,but with the Lords help he will be strong and victorious in ths battle.
leoigalvez
New member
Leonardo aka:Leo
Male
Seventeen. Eighteen on Jan '10
Southern California is my hometown
Diagnosed at Birth
5'4" 132 Lbs.
Will be attending college
PFTs; 90's baseline
Tune-ups 4 so far. Hope no more
I was in Cross-country hopefully will become a triathlete.
Law and philontrophy will be my vocations.
I'm extremely Liberal person.
Male
Seventeen. Eighteen on Jan '10
Southern California is my hometown
Diagnosed at Birth
5'4" 132 Lbs.
Will be attending college
PFTs; 90's baseline
Tune-ups 4 so far. Hope no more
I was in Cross-country hopefully will become a triathlete.
Law and philontrophy will be my vocations.
I'm extremely Liberal person.
LittleFlav
New member
who are you in a nut shell
Hi, I'm Sean. Some of you probably know my mom, cfhockeymom.
I'm 12 and I was diagnosed with CF at 3 months. I've only been in the hospital three times for CF related stuff. I'm pretty healthy. My PFT's are in the +90's.
I play hockey, basketball, and I'm a hockey ref.
I love hanging out with my friends.
I'm glad to be here
but I'll probably just be hanging out in the Teens forum for a few years
One of my favorite things about CF is farting <img src="i/expressions/proudfart.gif" border="0"> so my dad will stop tickling me <img src="i/expressions/face-icon-small-cool.gif" border="0">
LittleFlav/Sean 12
Hi, I'm Sean. Some of you probably know my mom, cfhockeymom.
I'm 12 and I was diagnosed with CF at 3 months. I've only been in the hospital three times for CF related stuff. I'm pretty healthy. My PFT's are in the +90's.
I play hockey, basketball, and I'm a hockey ref.
I love hanging out with my friends.
I'm glad to be here
but I'll probably just be hanging out in the Teens forum for a few years One of my favorite things about CF is farting <img src="i/expressions/proudfart.gif" border="0"> so my dad will stop tickling me <img src="i/expressions/face-icon-small-cool.gif" border="0">
LittleFlav/Sean 12
MissOxygenUSA
New member
who are you in a nut shell
I'm Meghann!
I don't have CF, but Bronchiectasis. (like CF)
I'm 28, 29 in July!
I'm single at the moment but have been engaged once.
I'm on oxygen 24-7 and have been for the last 16 years.
I'm on the waiting list for a double-lung transplant at UNC, in Chapel Hill, NC!
But, I'm a DUKE fan at heart!
I used to swim competitively and was a cheerleader before I got sick at age 12.
I have a furry son who is of Pomeranian descent and named Neeko.
Thank you, drive through please!
I'm Meghann!
I don't have CF, but Bronchiectasis. (like CF)
I'm 28, 29 in July!
I'm single at the moment but have been engaged once.
I'm on oxygen 24-7 and have been for the last 16 years.
I'm on the waiting list for a double-lung transplant at UNC, in Chapel Hill, NC!
But, I'm a DUKE fan at heart!
I used to swim competitively and was a cheerleader before I got sick at age 12.
I have a furry son who is of Pomeranian descent and named Neeko.
Thank you, drive through please!
camperscove
New member
who are you in a nut shell
I'm Jessica, mom to 7 yo daughter wo CF and son 4.5 yo w CF
We live in Alaska and fly 900 miles every 3 months to Clinic. The most compliant family you'll ever meet
I stay home with my son, daughter is in 1st grade
Recently took up running and soccer
Love to kayak and camp
Am FINALLY hiking the Chilkoot Trail this summer!!
My son doesn't know he has CF, but he kicks its butt every day!
Is pancreatic insufficient, asthma, and recently cultured PA
Rocked his first PFT in November, all though we know it's not reliable at this age
Is GROWING!! His weight is at 50% AND height is 63%. YAY!
Loves soccer, football, basketball downhill and x-country skiing
Would like to be a fireman, policeman, helicopter pilot, diver, pizza maker, and excavator operator when he grows up!
He was diagnosed at 2 after a sweat test "just to rule CF out"!
I'm Jessica, mom to 7 yo daughter wo CF and son 4.5 yo w CF
We live in Alaska and fly 900 miles every 3 months to Clinic. The most compliant family you'll ever meet
I stay home with my son, daughter is in 1st grade
Recently took up running and soccer
Love to kayak and camp
Am FINALLY hiking the Chilkoot Trail this summer!!
My son doesn't know he has CF, but he kicks its butt every day!
Is pancreatic insufficient, asthma, and recently cultured PA
Rocked his first PFT in November, all though we know it's not reliable at this age
Is GROWING!! His weight is at 50% AND height is 63%. YAY!
Loves soccer, football, basketball downhill and x-country skiing
Would like to be a fireman, policeman, helicopter pilot, diver, pizza maker, and excavator operator when he grows up!
He was diagnosed at 2 after a sweat test "just to rule CF out"!
who are you in a nut shell
Hey I'm Elizabeth-
I'm 26F w/ CF. I stumbled across this site and forum a few weeks ago and have been lurking around alot since then. I owe a big thank you to all of you because this forum has been so incredibly informative! So here's a little about me...
I live in New York.
Was diagnosed @ 6mo when I was admitted to the hospital for dehydration during a hot summer.
I'm 5'8 and 125 lbs. Pancreatic sufficient.
I am DF508 and 2nd mutation is currently unknown...but recently did additional genetic testing and still waiting for the results.
PFT's right now in the low 40's...trying really hard to improve that because its lower than my norm.
Not currently working. I have a hard time swinging work and keeping up my health. I really admire those of you who do.
I love photography, baking, shopping, the beach, puppies, chick flicks, and a good book.
I don't really have any friends with CF so I am very glad to be here. Wish I found this site years ago .
Hey I'm Elizabeth-
I'm 26F w/ CF. I stumbled across this site and forum a few weeks ago and have been lurking around alot since then. I owe a big thank you to all of you because this forum has been so incredibly informative! So here's a little about me...
I live in New York.
Was diagnosed @ 6mo when I was admitted to the hospital for dehydration during a hot summer.
I'm 5'8 and 125 lbs. Pancreatic sufficient.
I am DF508 and 2nd mutation is currently unknown...but recently did additional genetic testing and still waiting for the results.
PFT's right now in the low 40's...trying really hard to improve that because its lower than my norm.
Not currently working. I have a hard time swinging work and keeping up my health. I really admire those of you who do.
I love photography, baking, shopping, the beach, puppies, chick flicks, and a good book.
I don't really have any friends with CF so I am very glad to be here. Wish I found this site years ago .
who are you in a nut shell
My name is Debbie
I'm a girl
I'm 43
I live in mi
I was dx (diagnosed) at 42 (July 08)
I am not thin as most cf'er's I actually gained 70 lbs on steriods in a year!
My PFT's are around here somewhere. I was at like 27% (post-lobectomy) down from 39% pre-lobectomy
I've been disabled since '05
I have a thing for scrapbooking
I have a thing for my family
I'm married 12 yrs this May and I have 2 children who are great!
I have a shih tzu and a cat.
I have been in and out of the hospital alot in the past 4 yrs. It has really kicked my butt in the past year though. I feel blessed though, because my brother died on his 7th birthday and I guess God had other plans for me. I feel very fortunate to have been given the chance to have gotten married and see my two children grow. My son was Valedictorian of his class and is a Jr @ Western University and my daughter is 11 soon to be 12 and she is a smartie too. I hope to talk with others and learn together.
Laurie from Michigan!
My name is Debbie
I'm a girl
I'm 43
I live in mi
I was dx (diagnosed) at 42 (July 08)
I am not thin as most cf'er's I actually gained 70 lbs on steriods in a year!
My PFT's are around here somewhere. I was at like 27% (post-lobectomy) down from 39% pre-lobectomy
I've been disabled since '05
I have a thing for scrapbooking
I have a thing for my family
I'm married 12 yrs this May and I have 2 children who are great!
I have a shih tzu and a cat.
I have been in and out of the hospital alot in the past 4 yrs. It has really kicked my butt in the past year though. I feel blessed though, because my brother died on his 7th birthday and I guess God had other plans for me. I feel very fortunate to have been given the chance to have gotten married and see my two children grow. My son was Valedictorian of his class and is a Jr @ Western University and my daughter is 11 soon to be 12 and she is a smartie too. I hope to talk with others and learn together.
Laurie from Michigan!
M
Mommy2Zeke
Guest
who are you in a nut shell
My name is Jen
I'm female
I'm 27
I live in Oklahoma
My son (first child) was dx'd at 2 weeks old after having Meconium Ileus (March '09)
My husband and I didn't know we were carriers
I might have CF and am undergoing testing soon for CF as well as autoimmune deficiencies (2 major sinus surgeries, numerous lung infections, permanent lung damage from pneumonia,IBS, lactose intolerance.)
I'm a graphic designer who works for a flight simulation company
I love shoes and at one time owned 67 pairs (until my hubby made me get rid of 1/2)
I love traveling (Paris has been my fave place to visit so far)
I am a Christian and I am heavily involved in my church as a volunteer visual arts coordinator
My faith is what makes all of the recent developments in our lives bearable.
My name is Jen
I'm female
I'm 27
I live in Oklahoma
My son (first child) was dx'd at 2 weeks old after having Meconium Ileus (March '09)
My husband and I didn't know we were carriers
I might have CF and am undergoing testing soon for CF as well as autoimmune deficiencies (2 major sinus surgeries, numerous lung infections, permanent lung damage from pneumonia,IBS, lactose intolerance.)
I'm a graphic designer who works for a flight simulation company
I love shoes and at one time owned 67 pairs (until my hubby made me get rid of 1/2)
I love traveling (Paris has been my fave place to visit so far)
I am a Christian and I am heavily involved in my church as a volunteer visual arts coordinator
My faith is what makes all of the recent developments in our lives bearable.
who are you
I am just a mom to one 23 year old daughter with CF who has a little 3 1/2 boy or as we someties refer to him as the terror. I also have a 27 year old son single and tired of mommy trying to find him a nice girl. And I have a 25 year old daughter who we were told once was a carrier. She has a 4 yr old girl and 15 day old little boy. My son diagnosed 4 days old my daughter as newborn.
My favorite saying to the kids when they were young was lets get to the doctors early cause we may get in early and can leave before traffic gets heavy.(the clinic was 2 hrs away)- as you probably all know as you all deal with the doctors we never did and the kids still remind me of it today.
I live in upstate NY, work and as my daughter's health has not been the best lately I am taking care of my grandson while she is in the hospital. Wish I knew about this site years ago . Motto try to see humor in life cause if you don't you will go crazy
I am just a mom to one 23 year old daughter with CF who has a little 3 1/2 boy or as we someties refer to him as the terror. I also have a 27 year old son single and tired of mommy trying to find him a nice girl. And I have a 25 year old daughter who we were told once was a carrier. She has a 4 yr old girl and 15 day old little boy. My son diagnosed 4 days old my daughter as newborn.
My favorite saying to the kids when they were young was lets get to the doctors early cause we may get in early and can leave before traffic gets heavy.(the clinic was 2 hrs away)- as you probably all know as you all deal with the doctors we never did and the kids still remind me of it today.
I live in upstate NY, work and as my daughter's health has not been the best lately I am taking care of my grandson while she is in the hospital. Wish I knew about this site years ago . Motto try to see humor in life cause if you don't you will go crazy
who are you in a nut shell
My name is Andrea (girl)
I was diagnosed at 4 months (but mom and dad tried when I was born but Home Hospital wasn't doing something right so we went to specialists at Riley and the nurse knew before they even took the test)
I am 22 years old
I still live with my parents due to health issues
I am on disability and babysit part-time
My PFT's are not that great (FEV1 38%)
I live in Indiana
I am currently going to school to be an elementary teacher
I have a 12 year old cat
I love popcorn, mountain dew and bacon
I dont let having CF get me down
My name is Andrea (girl)
I was diagnosed at 4 months (but mom and dad tried when I was born but Home Hospital wasn't doing something right so we went to specialists at Riley and the nurse knew before they even took the test)
I am 22 years old
I still live with my parents due to health issues
I am on disability and babysit part-time
My PFT's are not that great (FEV1 38%)
I live in Indiana
I am currently going to school to be an elementary teacher
I have a 12 year old cat
I love popcorn, mountain dew and bacon
I dont let having CF get me down
Sunoanbuki
New member
who are you in a nut shell
Hello everyone.
My name is Brian..I'm a dude.
I'm 23 .. 24 in a month.
I live in NJ.
I'm 5'5" and weigh 145lbs.
Diagnosed at 5 months.
Pancreatic Insufficient.
No prior history in the family before me.
I fall in the moderate category.
Two older sisters and a younger brother who are not carriers.
I also have Asthma and MRSA.
I play drums in a band called The Diminished Scale.
I lift weights and exercise every day.
Single as can be.
Love getting tattooed.
Terrified of spiders.
The Beast and Lost are the best shows ever to me.
Glad I finally joined this site. Dr.s, friends and family have always suggested I find a good CF forum I just always put it off thinking I didn't need a support system. Looking forward to getting to know everyone. Thanks.
Hello everyone.
My name is Brian..I'm a dude.
I'm 23 .. 24 in a month.
I live in NJ.
I'm 5'5" and weigh 145lbs.
Diagnosed at 5 months.
Pancreatic Insufficient.
No prior history in the family before me.
I fall in the moderate category.
Two older sisters and a younger brother who are not carriers.
I also have Asthma and MRSA.
I play drums in a band called The Diminished Scale.
I lift weights and exercise every day.
Single as can be.
Love getting tattooed.
Terrified of spiders.
The Beast and Lost are the best shows ever to me.
Glad I finally joined this site. Dr.s, friends and family have always suggested I find a good CF forum I just always put it off thinking I didn't need a support system. Looking forward to getting to know everyone. Thanks.
J
JasonDBrown
Guest
who are you
I am a nut in a shell.
I am a nut in a shell.
V
visionquest
Guest
who are you in a nut shell
Hi all!
My name is Mike
I will be 41 in June
I live in Washington State
I am 6' and weigh a wopping 135 right now.
I was diagnosed at 1 year for some reason I don't remember.
My PFTs are probably pretty low at the moment. My FEV1 was at 24% when I got out of the hopital a few months ago.
I have very strange ways of dealing with my CF compared to most, but they have done well for me.
I love to mountain bike, prospect for gold and play guitar. I am going to be into kayaking soon if I can pull it off.
I am getting married in June and we actually live most of the year in a van
I love my life!
This place is very interesting to me, lots of great people from what I see and lots of inspiration!
Hi all!
My name is Mike
I will be 41 in June
I live in Washington State
I am 6' and weigh a wopping 135 right now.
I was diagnosed at 1 year for some reason I don't remember.
My PFTs are probably pretty low at the moment. My FEV1 was at 24% when I got out of the hopital a few months ago.
I have very strange ways of dealing with my CF compared to most, but they have done well for me.
I love to mountain bike, prospect for gold and play guitar. I am going to be into kayaking soon if I can pull it off.
I am getting married in June and we actually live most of the year in a van
I love my life!
This place is very interesting to me, lots of great people from what I see and lots of inspiration!
who are you in a nut shell
My name is Andrea
I'm a girl
I'm 40
I live in FL
My daughter was born with intestinal blockage and was diagnosed with CF at 3 years old
She is now 20
I am a Licensed Mental Health Counselor
I am enrolled in a doctoral program
I am currently taking a Multicultural class
I decided to do my immersion project on the CF patient culture
I think it is important for me to use my education and influence to educate others on what it is like to live with CF and how that creates a unique culture for the patient and their families that transcends race and ethnicity.
My name is Andrea
I'm a girl
I'm 40
I live in FL
My daughter was born with intestinal blockage and was diagnosed with CF at 3 years old
She is now 20
I am a Licensed Mental Health Counselor
I am enrolled in a doctoral program
I am currently taking a Multicultural class
I decided to do my immersion project on the CF patient culture
I think it is important for me to use my education and influence to educate others on what it is like to live with CF and how that creates a unique culture for the patient and their families that transcends race and ethnicity.
ClaireBear
New member
who are you
I'm Claire
I'm a girl
28 years old, diagnosed 2 weeks ago
I'm 5'8" and weight 116lbs
Mom to a beautiful 3 yeard old girl
Married 4 years to a Marine (civilian now)
Flunked out of Army boot camp
Work full time processing homeowner's claims for Allstate
Failed my sweat test and only had the bare minimum genetic panel so far.
My FEV1 has been around 50 for the past two months.
I live in KY but am from IN.
I'm funny, just ask me.
I have a 6 year old pug and a 2 year old miniature american eskimo.
I was an orphan by the time I was 23
Thankfully my in-laws are awesome.
I'm Claire
I'm a girl
28 years old, diagnosed 2 weeks ago
I'm 5'8" and weight 116lbs
Mom to a beautiful 3 yeard old girl
Married 4 years to a Marine (civilian now)
Flunked out of Army boot camp
Work full time processing homeowner's claims for Allstate
Failed my sweat test and only had the bare minimum genetic panel so far.
My FEV1 has been around 50 for the past two months.
I live in KY but am from IN.
I'm funny, just ask me.
I have a 6 year old pug and a 2 year old miniature american eskimo.
I was an orphan by the time I was 23
Thankfully my in-laws are awesome.