Who are you in a nut shell

[Dominique Zeiders]

Name: Dominique

I'm 17 year old female

Diagnosed at age 1

df508 and unknown

Never had surgery. So far

Live in Texas but from Pennsylvania

Only child

Little cousin was diagnosed with CF at 4 months old

I live with my mom who has multiple sclerosis and dementia
And with my boyfriend of 3 years

I know sign Language because my bf brother is deaf

I also know german

I graduated high school a full year early, despite missing months of school I pulled through and was able to achieve my goals

I want to be a neurologist (brain and nervous system doctor) because of my mom

I have 2 strands of pseudomonas, ABPA, asthma, IBS, hempotysis.

I live my life to the fullest and never let CF win, I do all I can to be the best I can be.

I plan on attending University of Houston and going to Baylor med school.

I love all types of music

I enjoy salty foods and BBQ chicken and also meatloaf.
I prefer Pepsi over coke

I have moved a lot, I've been to 7 schools and lived in two states

I enjoy swimming and walking, I dont really do sports. And I love science

 

[henryb]

Hi Cory, I just read your message and the info on Citramel, which is being developed in NZ.
I live in Austria (NOT Australia...!) and am a father of two adult daughters with CF. Do you happen to have any precise information on when this drug will be available in NZ? It might take a while I'm afraid until it will be available to patients in and out of NZ.
Thanks for your reply and all the best to faraway NZ!

 

[calliejoy]

My name is Callie
I am 22 years old
Diagnosed at age 5 after persistent runny nose
2184insA and Df508
5'5 and 125lbs
I have only had 4 hospitalizations
FEV1s low because of scarring and inflammation (no infections currently) but no oxygen needed
Pancreatic sufficient and no digestive issues
Osteoporosis, Joint pain, and Heart issues from CF
Hated my CF doctors as a child and walked out of visit at age of 15. I will never again be treated by a CF specialized "team" of doctors and have be treated by a private adults only pulmonologist since I was 17 who I love.
I will be a senior in college (BS food science and pre-pharmacy)
Want medical marijuana to be legalized nationwide.
Currently annoyed with CF progress because nothing will be available for me to even "try" because of the rarity of my gene (>1%) for another 5 years.

 

[Cale Gilley]

My name is Cale
I'm a boy
I'm 26yr old
I was diagnosed at birth
I'm 6'2-3/4" 136lbs
Hobbies riding motorcycle playing video games playing pool(billiards)
Born in texas April 1, 1989 moved to Utah when I was 6 with my mother moved back to Texas April 27, 2013.
I didn't take care of myself very well in my early years i.e. not doing treatments. By the end of middle school my FEV1 was in the 80% after high school it was 60-70%. After graduating high school I started working for a Tuff Shed building storage buildings and garages I was the lead framer, also was going to school at night learning how to weld. After working there for 5 years and finishing my welding classes my FEV1 was in the 40-50%. Welding was a bad idea due to the environment fumes from welding, I still wasn't good at doing my treatments. After getting a job welding 6 months later I got so sick when I went into the emergency room they took my SP02 it was 74% feeling like someone was sitting on my chest I went in for treatments IV antibiotics usual my FEV1 was 23%. My doctor told me quit welding or id say you might live for 5yrs the way your going and it won't be a fun 5yrs. So I quit and moved to Texas 2013 I've slowly got worse but I've been fighting doing my treatments every day never missing. January 2015 I had a 30% collapsed lung(pneumothorax) which was horrible they thought it would go away so after a week in the hospital one morning I woke up at 3AM having an extreamly hard time breathing it had collapsed more. So they take me down and put a drain tube in my chest after a week they sent me home with the tube in and a one way valve it i came back a week later and it was back to normal my FEV1 was last checked before that it was at 21% November 2014. I've just gone in this June for IV antibiotics dropped my FEV 17% I'm back up to 19% and can handle the usual every day tasks anything more gets me winded. I'm on disability and live with my dad I'm either not feeling good enough to work or in the hospital every few months getting sick. So now I'm about to do testing for a lung transplant and we'll see where it goes from there.

 

[Ryan Reed]

Name is Ryan
Male
Age:21
Height:5'75
Weight:132
DF508x2
Currently work at a casino as a janitor, been doing that since early February. Before that I delivered cars for Enterprise Rent A Car. I work 40 hours a week and have only missed one day so far (crosses fingers) I enjoy technology, in fact I build my current desktop computer. I also enjoy golfing and some video games. I currently live at home with my parents. When I was 17 I also was diagnosed with diabetes and since then I have been insulin dependent. My education is a G.E.D. and I had to drop out my Jr. year of high school. I did have a short stint with college. As of right now i'm trying to take it one day at a time, I started weight training a month ago. When I was in high school I ran Cross Country and my 5k pr was 18:22. So I want to start running again as well but my pfts are in the 60's (though I know they could be worse) and I feel like i'll be discouraged from the drop off of my past level. Anyways I'm excited to join this forum and socialize with all of ya'll!

 

[Rich Kruit]

My name is Tiffany i am 35 yrs old i have 3 kids. I don't have cf my youngest does my son was diagnosed at age 1 1/2 from a sweat test because of gene mutations they found during his new born screening. He is now almost 4 and is just as healthy as my other 2 kids. My daughter age 6 has one cf gene she is a carrier.

 

[Pc1975]

Hi my name is Paul, I 40 years old and I don't have cf but my 16 month old son does he was diagnosed at about four weeks with the screen test they do for newborns with double f508. I have a daughter too without cf she is 3. We live in london

 

[justmo76]

Hi my name is Morgan.
I'm a 38 y/o guy with CF, I'm about 5'7" and weigh 150lbs.
I was diagnosed at 6 months old when I came down with pneumonia, I am Df508x2 and just started the paperwork for Orkambi.
Born and raised in Oklahoma, I spent 7 years in Austin TX but I am back in Oklahoma now.
I have my BS degree in Electrical Engineering Technology and work full time as a network engineer for a telecom company.
I enjoy gardening, gaming on the PC and brewing beer. I enjoy good food but most of my sense of smell is gone so I miss a lot on flavor anymore.
I keep up with my medications pretty well but I always plan to exercise tomorrow ha ha. What complicates my health and measurements like PFTs are surgeries for scoliosis (spinal fusion), and of my ribs and breastbone for a congenital sunken chest.

I want to follow other's stories about Orkambi (and trying to get it) and contribute my own experience.

 

[lrs2015]

Hello my name I'd Leeanna.

Don't have cf. But my daughter does she is one year. Dx at 2 1/2 weeks on newborn screen. Shes doing great. Ddf508. I have another daughter she is 9, has type 1 von willabrands. They both are blonde bundles of joy. They both like pickles! And are quite the handful! Live in indiana, elkhart area. Daughter goes to saint joe hospital. They are doing a great job with our care for our lil one with cf!

 

[Katie Low]

My name is Katie
I am 27
I have CF and CFRD
I am trying to get used to CFRD
I love to read, travel, cook, and drink wine
I am a teacher
I am getting my Masters to be a guidance counselor
I got married in 2012
I am thinking about having children
I was diagnosed with CF at 2 hours
I have had sinus surgery twice
I have no sense of smell
I love KC Masterpiece and chinese food
Im 5'1 and 150 lbs
My Fev is 95%
I just started really taking my health seriously.

 

[Janae Warren]

Hi littledebbie

My name is Janae. I'm a mother of two awesome children- Our son is 14 and always been healthy, our daughter is 7 and has always been "the sick child".

I have been reading on this forum for 3 months now. Tomorrow our little girl is getting the sweat test done. I don't want her to have CF but we are looking for answers to her chronic lung problems and it would be a relief to find out what is wrong. I never realized how bad it was until her adenoids were removed and she stopped getting ear infections. Before that she'd always be coughing with lots of phlegm but also running fever. Now that her adenoids are out she went 3 months straight without fever! That was a record! But she continued to swim in mucus. She has to work it up- heaving heaving, pushing and pushing and finally coughing and spitting. We do this regularly all day every day. Allergy testing all came back negative.

They've diagnosed her as asthmatic- but it just feels wrong. I have a close friend who lost 4 of her 5 children to CF. I kept thinking to myself that my daughter's symptoms looked more like a mild case of CF than asthma. I'd finally thought I was surely wrong when the dr recently said her gut is telling her that Lala has atypical CF.

So a short and sweet Hello to the group. I am fairly certain that the sweat test will be negative- I told the dr her sweat never seems at all salty. But her lungs sound like a 3 pack-a-day smoker's lungs. Trying to find out why.

Janae
BTW- Aside from her chronic mucus production
Laura hovers from 3rd to 5th percentile for height
My neice (sister's daughter) just found out she is a carrier

 

[Janae Warren]

What a sweet intro you posted! Best wishes to you!

 

[Aboveallislove]

Welcome Janae! I am so sorry for all her suffering and will say some prayers for you all tomorrow. Please do come back and let us know how it went.
hugs and prayers
Love

Hi littledebbie

My name is Janae. I'm a mother of two awesome children- Our son is 14 and always been healthy, our daughter is 7 and has always been "the sick child".

I have been reading on this forum for 3 months now. Tomorrow our little girl is getting the sweat test done. I don't want her to have CF but we are looking for answers to her chronic lung problems and it would be a relief to find out what is wrong. I never realized how bad it was until her adenoids were removed and she stopped getting ear infections. Before that she'd always be coughing with lots of phlegm but also running fever. Now that her adenoids are out she went 3 months straight without fever! That was a record! But she continued to swim in mucus. She has to work it up- heaving heaving, pushing and pushing and finally coughing and spitting. We do this regularly all day every day. Allergy testing all came back negative.

They've diagnosed her as asthmatic- but it just feels wrong. I have a close friend who lost 4 of her 5 children to CF. I kept thinking to myself that my daughter's symptoms looked more like a mild case of CF than asthma. I'd finally thought I was surely wrong when the dr recently said her gut is telling her that Lala has atypical CF.

So a short and sweet Hello to the group. I am fairly certain that the sweat test will be negative- I told the dr her sweat never seems at all salty. But her lungs sound like a 3 pack-a-day smoker's lungs. Trying to find out why.

Janae
BTW- Aside from her chronic mucus production
Laura hovers from 3rd to 5th percentile for height
My neice (sister's daughter) just found out she is a carrier

 

[Ben DeLong]

My name is Ben.
Age 27.
My wife, Kara, has CF. She's 22.
We are from Massachusetts. She is from Marthas Vineyard, I am from Cape Cod. We live on the Vineyard.
I am here to educate myself as much as I can about my wife's condition as we fear she is drawing close to her end stage. It scary as hell right now. I want to help her as much as I can, but there are many of times I feel useless. She gets angry with me for asking repeatedly what I can do to help, if she's pkay, what does she need/want. So I am turning to here. Maybe with all the minds here, we can help ease her pain and suffering, make her more comfortable so that both she and I can enjoy what time we have left together. Thank you all for whatever input, assistance you can give us. It is greatly appreciated.

 

[triples15]

My name is Ben.
Age 27.
My wife, Kara, has CF. She's 22.
We are from Massachusetts. She is from Marthas Vineyard, I am from Cape Cod. We live on the Vineyard.
I am here to educate myself as much as I can about my wife's condition as we fear she is drawing close to her end stage. It scary as hell right now. I want to help her as much as I can, but there are many of times I feel useless. She gets angry with me for asking repeatedly what I can do to help, if she's pkay, what does she need/want. So I am turning to here. Maybe with all the minds here, we can help ease her pain and suffering, make her more comfortable so that both she and I can enjoy what time we have left together. Thank you all for whatever input, assistance you can give us. It is greatly appreciated.

Welcome Ben, I'm glad you've found us.

I am so sorry to hear about your wife. I hope you will find support and information here to help you along this path.

I'm the CFer in our family, so I can't imagine what it's like to be in your shoes. I know it says a lot about the kind of person/spouse you are to seek us out in order to better support her. I'm sure that even though you feel a dejected you are doing a great job.

Do you go to her clinic appointments with her? If not,that would be a great way to learn more, and support her with your presence. You mention that she is nearing end stage, so if may, is she considering transplant?

As far as her getting angry about your questions, I would just tell her that you are there if/when she needs ANYTHING, but you are going to follow her lead on how to deal with things. So if sometimes she doesn't want to talk, or doesn't want you to do anything for her, that's okay. My GUESS would be that she's trying to hold onto her independence and wants nothing more than to be your wife and not feel like your patient. I know that's how I feel about my relationship with my husband. Of course as this disease progresses the reality is it just gets harder and harder to maintain that autonomy and she may be feeling resentful about that.

All of that being said, I can't speak for her so there's a chance I could be way off base and just projecting my own thoughts/feelings/emotions. I just felt it was worth mentioning since you are looking for guidance!

Hopefully others have some insight for you and do let us know if you have any specific questions.

Take care and hugs to both of you!

Autumn 34 w/cf

 

[Brandon Justice]

I'm delta F508 homozygous, I'm 20 years old with an FEV1 of 89% and it's all thanks to Orkambi. I've been on the drug for 2 years through its clinical trial phase. Trust me everyone, it's a miracle. Diet and exercise and certain health and wellness products along with Orkambi is key to your success. Take a second to run past my blog brandoncysticfibrosis.wordpress.com I started it yesterday so folks who are interested can track my journey and know that Orkambi not only works, it blew away all of my expectations.

 

[Nélia]

My name is Nélia.
I am the mother of a wonderful 13 year old boy with CF.
His daily routine has become my religion.
I am allways looking to learn form other people's experience with coping with CF.
I am always amazed how small, simple things sometimes can have huge impacts on his health.
My new goal is to find a way to make Orkambi available to him. We live in Europe and, as far as I Know Orkambi is not available here yet.
Every suggestion will be greatly appreciated.

 

[Aboveallislove]

Welcome nelia! Any chance he can try the 661 combo trial to get access before orcambi reimbursement goes through?

My name is Nélia.
I am the mother of a wonderful 13 year old boy with CF.
His daily routine has become my religion.
I am allways looking to learn form other people's experience with coping with CF.
I am always amazed how small, simple things sometimes can have huge impacts on his health.
My new goal is to find a way to make Orkambi available to him. We live in Europe and, as far as I Know Orkambi is not available here yet.
Every suggestion will be greatly appreciated.

 

[TheSaltyOne]

Hi guys, I'm 25 years old with Cystic Fibrosis. I have the Double Delta F508 mutation. My lung function is currently at 44%, which is up from 26%, so I'm pretty excited about that. Anyway, instead of writing a novel on here I wanted to just include a link to my "CF Story" video I made. Check it out if you have time: https://www.youtube.com/channel/UCNCRXz49zQXDqZu0osxdddw

Thanks and keep fighting everyone!

 

[Cathy Racicot]

My name is Cathy and my nephew has CF. He is 46 years old and has just had a bronchial artery embolization (BAE) for hemoptysis last night. There isn’t much information on the web about this so I was hoping to be able to reach out to CF patients who have had this procedure. My sister is staying at the hospital with her son so I thought I would gather some information to share with them if possible. Thanks