Who are you in a nut shell
- Thread starter littledebbie
- Start date
J
Jenrenea
Guest
Hi my name is Jennifer (no cf)
My daughter was diagnosed the day before Christmas at 3 weeks old by the new born screening.
Df508 & G542X
She's 20 inches long and weighs 8lbs 1oz and is now 6 weeks old.
She is pancreatic insufficient so we've started enzymes.
I lost my older brother to cf at 26 in 2006.
I'm 32. I've been married for 2.5 years. Live in tx. Going to the cf clinic at children's medical center Dallas. They have been great so far!
My daughter was diagnosed the day before Christmas at 3 weeks old by the new born screening.
Df508 & G542X
She's 20 inches long and weighs 8lbs 1oz and is now 6 weeks old.
She is pancreatic insufficient so we've started enzymes.
I lost my older brother to cf at 26 in 2006.
I'm 32. I've been married for 2.5 years. Live in tx. Going to the cf clinic at children's medical center Dallas. They have been great so far!
Aboveallislove
Super Moderator
Welcome mom and congrats on your precious daughter! So sorry for the lost of your brother.
believingjesus
Banned
Hi Jennifer! I ditto what aboveallislove said. I am so sorry for the loss of your brother at 26. I don't know why some things happen. Congratulations on your little daughter! God bless you all.
J
Jeana_Lynn
Guest
My name is Jeana.
I'm a girl.
I'm 38.
I have lived in Idaho for 3 years and Alaska for 12 before that.
I was diagnosed at 16 months.
My weight has finally become more stable at 115 lbs thanks to better control of my cfrd.
I am 5'1".
I am a mom to two boys (one adopted, 9-years-old and one birthed by me, 5-years-old).
I have 2 dogs, 2 horses and 2 bunnies.
I am a retired teacher.
I'm married to a truck driver.
I like to read, watch movies and play games with my kids.
I love sunshine and summer!
I'm a girl.
I'm 38.
I have lived in Idaho for 3 years and Alaska for 12 before that.
I was diagnosed at 16 months.
My weight has finally become more stable at 115 lbs thanks to better control of my cfrd.
I am 5'1".
I am a mom to two boys (one adopted, 9-years-old and one birthed by me, 5-years-old).
I have 2 dogs, 2 horses and 2 bunnies.
I am a retired teacher.
I'm married to a truck driver.
I like to read, watch movies and play games with my kids.
I love sunshine and summer!
My name is Ethan.
I'm a 33 year old male
I have lived in Utah for 12 years but grew up in a better place (Idaho).
I was diagnosed as an infant (failure to thrive) at 16 months.
Current FEV1~95%, have cultured psuedo and staph for as long as I've paid attention.
I'm 5'7", 155 lbs and growing, not vertically.
I've been married for 11 years to an amazing woman, who is a full time Mom.
I am a Dad to twin gradeschoolers (boy and girl) and a toddler girl (using IVF w/ICSI).
I have no pets but 3 apple trees, 3 peach, a pear, a cherry and some struggling grape vines.
I am a Mechanical Engineer (my job is to design the rocket parts to not blow up)
I'm Mormon and did a 2 year mission in Ohio right after H.S. (go Buckeyes)
I'm a Scoutmaster and have realized that 11-14 year old boys have no idea how to use their brains.
I like to hunt, camp, hike, run, play video games, play ball (basket, soccer, soft).
I'm pretty much up for anything active and/or social.
I'm a 33 year old male
I have lived in Utah for 12 years but grew up in a better place (Idaho).
I was diagnosed as an infant (failure to thrive) at 16 months.
Current FEV1~95%, have cultured psuedo and staph for as long as I've paid attention.
I'm 5'7", 155 lbs and growing, not vertically.
I've been married for 11 years to an amazing woman, who is a full time Mom.
I am a Dad to twin gradeschoolers (boy and girl) and a toddler girl (using IVF w/ICSI).
I have no pets but 3 apple trees, 3 peach, a pear, a cherry and some struggling grape vines.
I am a Mechanical Engineer (my job is to design the rocket parts to not blow up)
I'm Mormon and did a 2 year mission in Ohio right after H.S. (go Buckeyes)
I'm a Scoutmaster and have realized that 11-14 year old boys have no idea how to use their brains.
I like to hunt, camp, hike, run, play video games, play ball (basket, soccer, soft).
I'm pretty much up for anything active and/or social.
Hey guys,
Would like to introduce myself, my name is Tom, I'm 34 years old this year and had a transplant on the 08/16/2011. I do a lot of talks and presentations to parents with children with CF etc If anyone has any questions or would like some advice please feel free to contact me.
You can also visit this page to see a little more of my story:
http://www.pozible.com/project/188562
Would like to introduce myself, my name is Tom, I'm 34 years old this year and had a transplant on the 08/16/2011. I do a lot of talks and presentations to parents with children with CF etc If anyone has any questions or would like some advice please feel free to contact me.
You can also visit this page to see a little more of my story:
http://www.pozible.com/project/188562
My name is Josh.
I'm a 19 year old male.
I was diagnosed at birth.
I have a 25 year old brother with CF, too.
R553X & R553X
5'11", 125 lbs for as long as I can remember!
I study history and political science at the University of Alabama
I'd love to go to law school
I'm a fanatic about just about every sport
I'm a 19 year old male.
I was diagnosed at birth.
I have a 25 year old brother with CF, too.
R553X & R553X
5'11", 125 lbs for as long as I can remember!
I study history and political science at the University of Alabama
I'd love to go to law school
I'm a fanatic about just about every sport
Tammy Howard
New member
Hello I am a Mother of a beautiful 27 yr Daughter that was diagnosed at 3 months old she was born in 88 when in Missouri it was very unknown and she has surpassed the life expectancy * 21 * every day i have had after has been a blessing and i thank God for sending me one of his special Angels and given me the Honer of Raising such incredible Women She has inspired so many people touched so many lives and does not let Cf control her life she lives everyday alive and she thrives She has brought Miracle baby into this world and did not let the Dr's Let the Dr tell her she had to abort Her Child I stood by her knowing that i could loose her but we put our faith In the :Lord and Let his will be Done so much to tell glad found a web sight to share my struggles as a Mother that has raised a child with Cf my fears my tears my loughter and my beautiful daughter Life
Hi! I'm Emily, but most people call me Em. I'm 18, have 2 siblings, both have CF. My sister was the first, and she was diagnosed when she was 2. I was next, and though I was diagnosed at 2 weeks, my mom knew I had CF a couple days after my birth because of stomach problems. She started giving me my sisters enzymes (with the OK from our CF nurse) and poof, it was better. My younger brother was diagnosed within days after his birth. My PFT's have been great, baseline is low 90's but recently they have been stuck in the low 80's. They've declined 30% in the past 2 years and that is why I am looking at all my options and possibly considering a move to the beach... Preferably a warm beach. I'm engaged, but we aren't able to get married due to health insurance issues and my inability to work (my immune system is horrible and I catch everything, despite the high numbers). So... Permanently engaged? Oh well. I've had 5 sinus surgeries... or 6. I've lost count. Hospital admissions are about once every 3 months. I love the beach and working out! It's just a matter of getting myself into a rhythm of going to the gym, woops. Pre-CFRD... Hmm. I'm not sure what else! That's a little bit about me!
Hello my name is Harrison. I am African American . I was diagnose at birth failure to thrive. I'm 26 and I'm a respiratory therapist. I spent most of my life living in high elevation. I currently live at 7000ft. I'm bout 5'4. 5'5 on a good day. I weigh bout 145. No kids yet or anything. I'm trying to hit 150lb but I'm stuck at all wall. I'm very physically active as best as I can. I have heard of other people with cf but never really new anyone. I am very competitive so my life goal is to be one of the strongest people with cf.
I'm mom to a 13 year old boy who was only diagnosed a year and a half ago after a long history of poor growth, infections, hospitalizations and falling PFTs.
He has tested positive for two mutations: G576a and R668c, but my husband has the same two mutations. I have no known mutations. So, technically, he should not have CF. But, since being treated more like a CF patient he has grown, finally put on weight and has raised his PFTs.
He has tested positive for two mutations: G576a and R668c, but my husband has the same two mutations. I have no known mutations. So, technically, he should not have CF. But, since being treated more like a CF patient he has grown, finally put on weight and has raised his PFTs.
clystal_ramirez
New member
My name is Clystal or Chris for short. I am a 16 year old guy, I was never quite sure how they found out I had CF but i Diagnosed at the age of 4 1/2 years old...i have never had any problems with CF until the other day and they found d fluid on my lungs...i like to hunt and fish...and i suppose that is about it...if you have any questions you can Private message me
Hi, I'm Rachel. I was diagnosed at 32. It started with gastric issues that just wouldn't go away. (Don't need to describe the stools I was having as most of you are familiar!) After every test under the sun at GI docs, I decided to get my own genetic test at 23andme to help guide diagnostics. DeltaF508 showed up and so did confirmation of Heamochromatosis, which I have read some preliminary studies that propose HH is a modifier locus gene for CF. I found a primary who would take me seriously and look into further... and 3 months later and a loss of 30 pounds we arrived at a conclusion.
Now that I am being treated I am doing much better and have put on weight. Have had chronic respiratory and sinus infections all my life. Born with jaundice, had pneumonia around 1.5 years old and was hospitalized for 2 days. I was a professional modern and ballet dancer and very serious about it from a young age. My friends always teased me for being sick. My husband and his family have always told me I get sick more than anyone they know! I had two sinus surgeries before I was diagnosed with CF. My FEV1 is around 70%. Sitting here typing this I have an upper respiratory bacterial infection. I'm kind of frustrated, just trying to get used to how I am supposed to manage this now that I know and now that it is a little more apparent.
I recently went to a part-time schedule as a physical therapist in an outpatient orthopedic clinic. Its nice to find a place toe share as I feel family and friends are a little overwhelmed.
Now that I am being treated I am doing much better and have put on weight. Have had chronic respiratory and sinus infections all my life. Born with jaundice, had pneumonia around 1.5 years old and was hospitalized for 2 days. I was a professional modern and ballet dancer and very serious about it from a young age. My friends always teased me for being sick. My husband and his family have always told me I get sick more than anyone they know! I had two sinus surgeries before I was diagnosed with CF. My FEV1 is around 70%. Sitting here typing this I have an upper respiratory bacterial infection. I'm kind of frustrated, just trying to get used to how I am supposed to manage this now that I know and now that it is a little more apparent.
I recently went to a part-time schedule as a physical therapist in an outpatient orthopedic clinic. Its nice to find a place toe share as I feel family and friends are a little overwhelmed.
Hi,
I am a mom to two CF kiddos. Our son (8 months) was diagnosed at birth after a positive newborn screen. Our three year old daughter had a negative screen but we had her tested just in case, and she was diagnosed as well.
Both have one copy of F508 and one of G551d, so we have high hopes for kalydeco.
Thanks so much for the warm welcome and support!
I am a mom to two CF kiddos. Our son (8 months) was diagnosed at birth after a positive newborn screen. Our three year old daughter had a negative screen but we had her tested just in case, and she was diagnosed as well.
Both have one copy of F508 and one of G551d, so we have high hopes for kalydeco.
Thanks so much for the warm welcome and support!
Aboveallislove
Super Moderator
Oh, mom, you are "lucky". Is your 3 year old on it yet? I'm pretty sure the FDA approved for 2-5 year olds last month!!
The doctors prescribed it as soon as her diagnosis was confirmed, but we are on our third month waiting for BlueCross to approve. It's hugely frustrating. Hoping every day for the phone call letting us know she can start! And that she does not experience any of the side effects that would mean she couldn't continue on the drug!!
leothelioness31
New member
My name is Heather
I'm 33 and married
Dx at age 1 because of collapsed lung
Double delta f508
I've got type 1 diabetes, clotting disorder, PCOS
I've had kidney failure because of the antibiotics
I've got Fibrosing Colonopathy from the strong enzymes
I write poetry, read, watch TV, play with my cats, listen to music
My dream is to be in a TV show, movie or play, I love to act
I'm 33 and married
Dx at age 1 because of collapsed lung
Double delta f508
I've got type 1 diabetes, clotting disorder, PCOS
I've had kidney failure because of the antibiotics
I've got Fibrosing Colonopathy from the strong enzymes
I write poetry, read, watch TV, play with my cats, listen to music
My dream is to be in a TV show, movie or play, I love to act
MonoLungNZ
New member
Hi everyone
I'm Cory, I'm a 44yr old Kiwi down here in New Zealand.
I don't have CF but I do have bronchiectasis, and had a pneumonectomy last year so have one remaining lung... because of my respiratory issues (I also have Poland Syndrome) have a few symptoms that are common to CF and have had Docs diagnose me as likely CF until finally was correctly diagnosed about ten years ago.
I've seen some recent publicity here in NZ for a new CF trial drug (https://www.snowballeffect.co.nz/breathe-easy) and am interested in seeing if/how the benefits may apply to bx also... though it's hard as there is a much smaller bx community than CF.
Anyway, I hope you're going well - in your own way, wherever you are in the world.
And if you have any questions about bx, or New Zealand by all means let me know
I'm Cory, I'm a 44yr old Kiwi down here in New Zealand.
I don't have CF but I do have bronchiectasis, and had a pneumonectomy last year so have one remaining lung... because of my respiratory issues (I also have Poland Syndrome) have a few symptoms that are common to CF and have had Docs diagnose me as likely CF until finally was correctly diagnosed about ten years ago.
I've seen some recent publicity here in NZ for a new CF trial drug (https://www.snowballeffect.co.nz/breathe-easy) and am interested in seeing if/how the benefits may apply to bx also... though it's hard as there is a much smaller bx community than CF.
Anyway, I hope you're going well - in your own way, wherever you are in the world.
And if you have any questions about bx, or New Zealand by all means let me know