Who are you in a nut shell


New member
Hi everyone,

My name is Lisa. I'm 45 years old now; I was diagnosed at age 24. Fortunately, I don't have any pancreas problems or diabetes. For me, it's mostly my sinuses (9 sinus surgeries) and lungs (about three years ago, I traded pseudomonas for mycobacterium abscessus). I also cough up a lot of blood (had one bronchial artery embolization).

I'm a college professor, and I really love my job. Increasingly, I've been dealing with a lot of pain (hands, neck, etc.). Rheumatologist has ruled out arthritis; she said it sounds more like fibromyalgia. But, lately, the pain has been bothering more than anything else. Worried that I won't be able to teach much longer, which is heartbreaking.

Happily married for ten years. Enjoy reading, traveling, and scrabble.

I've been reading posts for the past several years but never chimed in. I live in northern California and attend the Adult CF Center at UC Davis.

Thanks for letting me lurk in the past. I'll try to offer insight and/or support when I can. I guess it's just nice to know that we're not alone, right? :)


New member
Hey. I’m Tom. 26 years old. Diagnosed at about 2 due to prolonged health issues.
Currently around 65% FEV and feel very lucky at the moment considering what others go through. I feel a little odd writing this as I’m typically not very vocal about my CF - not out of embarrassment I just don’t appreciate pity, as I’m sure most of you don’t either, so this is very uncharacteristic.
I live in Cleveland Ohio and work as a business intelligence analyst for a software company (hate the corporate BS but health insurance is good lol)
I enjoy reading - mostly non-fiction or novels based in philosophy, especially existentialism - math & science texts and a lot of Camus, Dostoyevsky, and Kafka.
I love motorcycles (I have two), old cars, going to concerts at least once per week, and enjoying time with genuine people.
I paint terribly and really enjoy a nice whiskey from time to time.
I’m sure no one actually reads these things as I see this post was started about a decade ago, but it feels kind of good to reach out.

Amor Fati.


New member
My name is Sara
I'm a woman
I live in italian
I am a teacher
I have a girl child
I love my daughter
I love road trips.
i love myself
I am atheist


New member
My name is mina.
I am a female.
I am 29 years of age.
I live in Southern CA and I LOVE LOVE LOVE it.
I was dx at three weeks due to failure to thrive.
My FEV1 hovers right around 58% or so.
My goal is to at least get it back to 70%
I have had two surgeries for scoliosis and now have metal rods in my back.
I love cooking and reading.
I am happily married to a Marine that everyone calls Larry.
We have one cat named Jade, and are looking to adopt a black female pug puppy here soon.
I love love life and am so thankful for everyday!
In a two year relationship with my girlfriend
Hospitalized twice in the past 6 years (Just got out)
I am very diligent about my treatments (Was not until about age 20)
All in all I feel pretty good despite my neglect at times.


New member
My name is Meggy
I am a female
I am 29 years of age
I am married to a Airforce Airman
We live in Northern California
I love hanging out with animals and reading
I am recently diagnosed (Late in life I know)
I am christian
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New member
My name is Rob
I have a rottweiler and a cat
I work in a restaurant
Looking for help for my uncle (67)
Speak 2 languages
Loves the beach
Wants to travel


New member
Mesajul asta e cam vechi. Dar dacă mai esti pe aici da mi un semn. Si noi suntem din București si una dintre mutatii e w1282x


Staff member
Mesajul asta e cam vechi. Dar dacă mai esti pe aici da mi un semn. Si noi suntem din București si una dintre mutatii e w1282x

Using Google Translate: [FONT=Verdana,Arial,Tahoma,Calibri,Geneva,sans-serif]This message is a little old. But if you're still here, give me a sign. And we are from Bucharest and one of the mutations is W1282X [/FONT]


New member
My Name is siavash Levy!
I am 36 years old ( I see a lot of older ages on here. Wow. We came a long way in the CF community )
I was diagnosed with CF at two weeks.
I have Diabetes (The struggle is real)
I'm fat at 180 pounds at only 5' 6'' (and a half - can't forget that)
I'm married ten years now. (Means no money for ten years.. shhh)
I'm a follower of Christ!!!
I'm always working to become a better ME.
I love to read about other peoples stories....


New member
My name is Doug
I am a new member as of 12/05/19
I am 54 years old and was diagnosed at 5 years old
I have a sister with CF who passed away at age 12, she was 3 years older than me
My mutations are R347P and 4005+2T>C
My Fev1 is 51%
I am a Registered Nurse and worked as an ICU nurse for many years before becoming an Infection Preventionist
I recently had to quit my job and apply for SSDI due to my declining health
I have a multi-drug resistant strain of Mycobacteria Abscessus that is causing my declining health
I also have Allergic Bronchopulmonary Aspergillosis and MRSA
I have had 2 sinus surgeries
I have been married for 15 years and have 2 beautiful step daughters
I live in Oregon
I have 2 dogs and a cat (I love animals)
I am 6'0" and 160 lbs
I am pancreatic sufficient
I am a vegan
I am an avid cyclist and participated in many Cycle For Life events