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Cystic Fibrosis
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Posted 10/17/2007 8:31 AM (GMT 0)
Hello, everyone.  Deirdre here.  I'm nineteen and in my second year of college. 

I just wanted to know if anyone else here is in college or has already gone through college.  What was your experience?  Did you live on campus, or commute?  How severe is your case of CF, and how did/does that affect your school life?  I lived in the dorms last year.  And I shared a room.  Did anyone else do that?  It was pretty hard getting all the treatments in.  And I hate when I've got a real phlegmy cough and I'm stuck in class around all those people who probably think I'm going to pass something to them. 

I've also been wondering about my career/job choice, and I wanted to hear from other CFers who are working to support themselves and their families.  I was reading a pamphlet from the CFF website that talks about choosing between a job and a career.  What career or job did you choose, and why?  Did you stick with dream job that you'd had since you were young?  Or would you say CF prevented you from pursuing that career (that is, if you didn't have a change of heart for other reasons)?  How long did you work/have been working in that field or for that job?  How severe is your particular case of CF, and how did your CF affect your job choice (or how is it currently affecting your job), if at all?

Also, if you don't mind, would you put down your age?  I know these are all fairly personal questions, so don't answer if you're not comfortable, but I would really appreciate any and all insight.  Thanks!

Posted 10/28/2007 5:21 AM (GMT 0)
Hello Deirdre. I know it was March when you posted this, which was a while ago. But, I just registered, and it reminded me a lot of the problems I face.

I am also nineteen and in my second year of college. I go to a community college, so I don't have to deal with the awkwardness of doing my treatments with a new roomate. But, I know how it is with the embarrassing coughing in class, especially when a coughing fit occurs and you just can't stop until you can get some water.

My case of Cystic Fibrosis is pretty bad I guess. I don't do a lot of conversing with other Cystic Fibrosis members, but I have decided to change that. My whole life I have tried to hide it, and live like any normal person, difficult as that may be at times. I've noticed lately though that with getting older, I just can't do as much as I could do several years ago. It's really started to worry me a little lately. Over the last few years my FEV 1 on my lung functions have dropped into the mid-twenty percent range. It used to not bother me, but I can't even walk up a flight of stairs anymore without my heart pounding and being short-winded. Also, I cough and clear my throat more than I used to. My weight is also another issue. No matter how much I eat, I can't gain weight. It seems like I'm stuck at 5' and 86 lbs forever. It's very hard to balance my activity level and weight. If I exercise too much I lose weight, and if I don't exercise enough I'm congested and don't feel good.

I have worked at a Deli in a grocery store the last year in a half. I absolutely hate it, but at least my co-workers are understanding and I get off when I have unexpected hospitalizations. It's rough at times running back and forth, and I get tired faster. But, I'm so stubborn that I don't let anyone know, and I just keep on trucking. I get embarrassed when I have to hide in the back and cough and get a sip of water, I fret that people are going to think I'm gross and contagious. I used to want to be an author and illustrator when I was little, then it was a veterinarian, and now I've decided to be a photographer. I try not to think too much of what my CF will do to my future. I just live in the moment and dream about becoming a photographer.

Well, please reply back to me and let me know all about you as well. It felt good letting all that out to someone who can relate.

Melissa
Posted 2/8/2008 4:56 AM (GMT 0)

Hello, Melissa!  I'm really sorry it took so long for me to respond.  It's seriously been
months, and the slow response on this site is exactly what keeps me from
coming back too often.  hah. 
  Well, I'm gonna let you know a bit about me, just as you did, and I'm
not gonna lie, I'm kind of excited because you're my age and in a
similar situation in school.  I would love nothing more than to meet a
whole group of people with CF.  I really would love that.  Or even just one
person.  And here you are, even if we can't meet in person.
    So, I'm 19, almost twenty, I'm in my second year of college - which
is nuts to think about.  I live in San Francisco in an apartment with
a friend of mine.  It's great having my own room, especially after the
whole stranger-roommate situation last year.  Hum... so, I was born and
raised in the Bay Area of California - just outside of San Francisco.
  I've got my mom and dad at home, as well as my grandma and my little
brother.  I've also got an older brother who is currently living and
studying in Southern California. 
    As for my CF, I was only diagnosed about three years ago - when I
was sixteen.  It'll be three years this summer.  I was definitely in
denial about the diagnosis, and I tried to keep living like I'd been
living - bad idea.  I was getting sick a lot and I wasn't gaining weight.  I
finally have started coming to terms with this disease, beginning the
end of last year.  It's not something I can hide anymore.  Only my
family and a few close friends know I have CF, and even then I don't seem
comfortable enough letting them know my pain.  Honestly, at this point,
I'm sick of hiding it all, so I'm working on letting it out and being
more open with people I meet.  I haven't gotten far in letting people
know, but I'll get there eventually.  What I need now is to learn to love
myself and accept my disease, because the way I see it is if I can
accept it, no one else should have a problem with it.  And if they do,
it's their problem, not mine.  So, currently, things are looking up,
even when I feel crappy.  I can't dwell so much on the negative
anymore.  It was killing me.  I have to be honest though, right now I've got
a pain in my right lung and it hurts to breath.  I just want it to go
away, and it will, but it makes me want to cry a little. 
    Okay, so, I think I've just dumped a whole lot of information on
you.  Hope you don't mind too much.  And I understand if you don't
exactly want to reply immediately or in as much detail. hahah.. k, take care,
and I hope to hear from you soon.  my email address is [email protected] so please email me so maybe we can keep in touch better.  thanks!
  -Deirdre

Posted 8/18/2008 4:24 AM (GMT 0)
Hi Diedre! I know you posted this forever and ever ago, but I just joined and I wanted to share my experience with you as well.

I am 21 years old and now a senior in college. I stayed close to home so that I could be home if I needed to be. I did, however, live on campus for the first three years and would do so again if it weren't for student teaching.

I was diagnosed at birth, which I was very fortunate for and they tell me I have a very mild case :-). I do my treatments two times a day, but I did find it hard to do it in the dorms that often. I had a very reasonable roommate who also had health problems, which helped.

I am going for education which may not be the smartest idea, but ya know what it's my childhood dream and I NEED to teach. it's my passion. I did decided to do high school as it's typically not as germy.

Any questions you want to know, don't hesitate to ask :-) I wish you the best of luck!!

~Megan
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