HERE YOU CAN PUT YOUR COMMENTS , ON ANYTHING
YOU WANT , IT CAN BE PLACED ON THE WALL WITH YOUR NAME , OTHERS CAN REACT
TO YOUR MESSAGE , DR.BOB WILL GO FIRST AND YOU CAN PUT YOUR MESSAGE ON IT TOO !!!!!
DR.BOB SAYS "CYSTIC FIBROSIS I HATE IT (BUT I HAVE TO
LIVE WITH IT "SIGH")
Thalia harris says :I think cf is not much fun, but it
can also be concidered as a gift. Having cf makes us very special, and
it shows the world how strong we are!
Sarah Hitchings - CF means I can eat as much junk food
as I want without getting fat like normal kids.
dr.bob says IF YOU TAKE YOUR ENZYMES SARAH OTHERWISE !!!
TUMMY TROUBLE
Kyle says :CF is one thing about me that makes me special!
Besides I get to eat brownies for breakfast and my sister cant!
Matt says: CF makes me salty and good to eat!!
Dr.Bob says : mmm strong point matt , never thought about
getting eaten tho.
Anne says : my new name is Anne i live in pgh in the USA
i have 4 cats charly , abby , minat, oliver . i saw you,r picture william
you are cool i like you very much you are nice
Thanks Anne :)
Hi my name is Kevin i,m a C.F patcient and
i,m 7. i like to play baseball.
Hi!
My Name Is Andrew I'm nine and I Have CF. I live in Idaho. I like to
play computer games and X-V Racers The Off road kind. I have 3 chocolate
Labs Their names are Dreamer,Dakota and,Willow. I Also Have 1 cat named
Ninja. I do my Neb And flutter twice a day as I watch cartoons.
Hi, my name is Nicole and I am 12
There is no one around my own age where I live that has C.F
I 'm just looking for someone to chat with.
My name is Betty C. I am 13 years old and i have cf also
nice to see pages for us cfers to get involved with,yes cf is a bummer
but while im in the
hospital i get to do really cool things,And get lots of gifts to ,and
also lots and lots of cards
I try to think of all the good things and try not to think about the bad
. :~} Smile
hi! my name is emily. i live in norfolk,virginia. i have a brother name
patrick,and i am 4 years old. i don't mind the medicine but i don't like
the coughs.
Message from Doctor bob , i think 4 is wrong cause i dont know any 4 year old that can type me an e-mail :)
Hi,
My name is onemistee. I have Cystic Fibrosis. I was diagnosed when I was 3
months old. I am now 12, and a have asmatha on top of my cf. I have a lot of
lung problems and have a each belly button to feed me at night.
Hi!
My Name Is Andrew I'm nine and I Have CF. I live in Idaho. I like to
play computer games and X-V Racers The Off road kind. I have 3 chocolate
Labs Their names are Dreamer,Dakota and,Willow. I Also Have 1 cat named
Ninja. I do my Neb And flutter twice a day as I watch cartoons.
Hi Dr. Bob my name is Nicole
I hate taking my ADEK, they taste awful
Is it true that I might lose my sight if I don't take them?
I am 12 years old
I liked it better when I used to have to take the Poly vi Flor and the Vit.
K tablet
Comment from Doctor Bob , no Nicole you will not lose your sight , you will lose your nightsight , meaning you can go nightblind , i had that for many years and its scarry not to be able to see in the dark , all i saw was big yellow kind of spots , after taking my vitamins daily it came back tho, i couldnt drive a car at night if i was still nightblind :)
I REALLY HATE THOSE ADEK VITAMINS
I am 13 years old and i have been taking them for a long time ,Can't i
take any other kind of vitamins,I use to take centrum,Why cant we take
something like that?
I am Maureen I am 8yrs old and I have just found out last month that I have
CF. I have always had ALOT of tummy troubles and LOVE taking the enzymes
cause they make me feel better sometimes. I also have Crohn's Disease so that
can make my tummy hurt alot too. I am glad my mom found this page and will be
back to read it again.
hi my name it chasity i am 13yr old i dont like taking my vitimens thay are
sick pluse i also have dabetec.
Dr. Bob,
My name is Lindsey (age 7) and I have sixty-five roses (thats what I like to
call cf). I hate taking pills but my mommy and daddy like me swallow them with
rootbeer. I hate taking TOBI in my neb but I do it anyway to stay healthy.
Hi! My name is Danielle , I am 9 years old. I live in Ocean Springs MS.
I have a cat named pumpkin, a dog named kiska, I am in 3rd grade.
I have been lucky the last few years, in that i have not been sick.
I first found out that I CF when I was two. My mom said I could get email from other
CF children, hope to hear from you in the future.
HI MY NAME IS MEGAN I DON'T HAVE CF BUT FRIEND DOES WHEN SHE FIRST TOLD ME I
DID NOT KNOW WHAT TO THINK BUT NOW THAT I HAVE SEEN THIS WEB SIGHT I SEE ALL
THESE PEOPLE W/ CF AND THEY LOOK FINE YOU ARE 33 DR.BOB SO MY FRIEND COULD
LIVE A LONG TIME LIKE YOU OR AT LEAST THAT IS WAST I AM HOPING
MEGAN
HI MY NAME IS TINA I HAVE CF. I AM SAD RIGHT NOW BECAUSE MY FRIEND WHO ALSO
HAS CF JUST DIED
Hello William, or, Dr. Bob. I am Lindsay. I kind of shouldn't have gone
to your site, as I'm not a kid, and I do not have CF...but I found it,
and I really like it. One of my best friends, Jade, Has C.F. Right now,
I'm doing a science project on it... As I know a lot of people who have
it, and deal with it.... It doesn't just affect the patient, it affects
the whole family. When Jade goes in to the hospital, I go with her.
Anyway...cool site.
~Linz.
Hi Dr. Bob-
I really enjoyed your site! :) I am a 35 year old teacher with CF.
I teach elementary age children with Multiple Disabilities, those who
are Orthopedically Impaired and those who are considered Other Health
Impaired. I live with my wonderful husband (He is wonderful because he
puts up with me and I, like most people with CF, am headstrong and
stubborn! :) ) and ten year old, four legged son Slatz. He is a
handsome Springer Spaniel that is spoiled rotten! We live on the Alabama
Gulf Coast in Grand Bay, AL.
Thanks for doing such a great site! One of these days, I'd like to
do my own site.
Lee
hi im cody.Im 17 and i have cf. I was wondering because i seen something on
the knews about a drug they are working on that takes the mucus out of ur
lungs,but they cant release it until like another 5 years. do u know
anything about it? Another thing, i dont know how to gain weight
because i take like 10 enzymes before i eat and then im not hungry. do you
have any suggestions?
comment of dr.Bob , i told him to take his enzymes not before but during his meals , if you take all pills infront of it you ont have much appetite left and you cant eat , so take them while your eating , the new drugs will take a long time to get on the market.
how are you doing. thank you for the advice. how often are you in the
hospital. i hope they find a cure soon i am sick of this. do you now who
dr.borwitz is. one time i was in the hospital and they did a blood gas on me
it hurt so bad. i was just in the hospital and they decided to put a feeding
tube in me. do you have one. the only thing is it hurt really bad after
surgery. but the good thing is i gained 10 pounds. what meds are you on. i am
on albutaral, vanciral,pancrease m16. how old are you. my brother also has cf
to and is 17 years old. i love picklines because iv don't last long in me they
blow in a couple of hours. tommorrow i have to go to the hospital because i
have another chest infection. well got to go i have to do chest pt . bye your
friend maureen
Hi! I am from Puerto Rico and I also have Cystic fibrosis. I don't like it but I can live with it. I am a homeschooler
also.
Hi my name is Lisa and I have C.F. I am not a young one--I am actually 30! I wanted to tell all
of you how much I understand what you're going through and I admire you for that. Even though
there are many things about C.F. that are "high maintenance", try to develop a positive attitude
about the things you need to do, treatments etc. That will make things easier as life goes on. Most
important--set realistic goals for things you want to do. It gives you something to look forward to
and when you've accomplished it, life feels richer. It is so imortant to have fun and happy things
to look forward to! Then you won't get as sad or depressed. Try to make the most out of life
while you're out of the hospital, so that when you are in or are sick at home, you won't feel like the
fun parts of life pass you by. Good luck & good life!!!
my name is jeremy im 19 and have cf i just recently started needing oxygen i
wanted to know if i could do anything to get off the oxygen. is there
something i can do to try and get my oxygen level up. also i am looking for
other cf people i can talk to around my age online but cant find any chat
rooms for cf patients do you know of any please email me.
comment of dr.bob : when you have lungdamage (like we all have to a certain
amount) the ability to take in oxygen gets less , so when your saturation (
oxygen level in your blood) gets lower then 90 % you really NEED oxygen to
prevent damage to your brains and heart , all i know is that ventolin
(albuterol) and atrovent CAN improve that , but you need oxygen when your
walking or if your lungs are much damaged you need permanent oxygen.
You also can try to exercise , but do ask your physio therapist in the hospital
about that ( i just finished a month of biking in the hospital )
Hello
I would just like to tell Jack from Dorset, England that
walking is very good exercise and even though it does seem like hard
work at the time, it's great to keep you well.
Hi, my name is Aubrey. I am 10 years old and I have cystic fibrosis. I live
in New Hampshire with my mom and dad and my sister Ashlynn. We have a cat
named Sheba.
Hi! my name is Ty. I have Cystic Fibrosis. Its a pain in the butt. If
you have iny qustions pleas tipe back
I just want to knoe if anyone else has Cepacia. I'm 7 years old and have
it. It would be nice to talk to someone who also has this. Thanks
Alex
Hi, my name is Alex. I am 7 yrs and I have c.f. and diabetes. and boy do I
hate it so much. I wish I could eat candy because I love it. My treatments I
kinda like because they help me breath better. I also just learned how to
swallow my enzymes. I also have a vest that gives me my c.p. I like to sing
opera while I do my vest. I love my mom and dad they help take care of me.
Dr. Bob, thanks for having this site. My name is
Sherry Brandt and I am a first grade teacher. I just
found out today that one of my students has CF. I
was just surfing the net to find more information.
Thanks again for all the information.
Hey everyone, my name is Ashley I am 15 years old with CF. I am active in basketball
and softball, I played basketball last year on the freshman team, and I played softball
on the freshman and the junior varsity. I am a fast pitch softball pitcher and loving
every moment of it. I live in Idaho and I attend High school I'm in the tenth year. I can't
seem to do my flutter though any suggestions Dr. Bob.
Hi my name is Alex. I am 8 years old. I have CF and Diabetes and i do not
like it but it is ok. I like to roller blade, play barbies, and my dog
casper. I would love to get a pen pal my age with CF!!!!
I have cf and I'm 17, I've been to the hospital once for cf when I was
7, the rest of the time it was pollyps....I don't know how to feel, if I
truly have a mild case then I want to do somthing for those who aren't
so lucky...cause' I have a deep feeling that I could become one of them
at any time.
Comment from Dr.Bob , yes you could , but on the other hand it doesnt have to be that way , the first time i went for cf in the club was at age 30 !!!!
Hi Dr. Bob,
My name is Ashton and I am 10 years old with CF. I see alot of people don't like the ADEKs but I love them they taste like oranges. Your web site is sooo cool.
Hi Ashton thanks for the coool remark about my website , my ADEKS taste like vanilla which isnt bad at all either.
Hey DR Bob
My name is Patricia and i am 16 and have Cystic
Fibrosis i am still very young and been through a lot i have a G tube put in
when i was twelve and i have a Portacath because my vanes got to week well
the reason i was writing is to tell every one to keep fighting and don't give
up trust me i know how hard it is to have CF i so much wish i could run and
play like all my other friends do there are days i felt like giving up but i
put my best smile on and try to look foward and remember live every day like
it is your last
Ya that can have a bad side as well , living each day like it is your last , if you mean enjoying all things from everyday life i second that , if it means going raving and ranting in drugs , alcohol or any other way that harms your body i think thats a no good idea.
This is Aaron. I am tired of the hospital. I don't like other kids to be
afraid of me, that they will get sick too. My baby sister has had pneumonia
twice already, and I am scared she will be sick like me.
Hi Doc,
my name is Bianca N., I have CF and I am 11 years old. This is the first time I have visited your web site and it seems like fun. The worst thing I hate about having CF is having my neb, it takes so much time and my Mum even makes me have it when I feel well, but now I have found your web site I can go on it when I am having it. I also have a growth problems, which means that I have to have an injection every day.
My hobbies are acting , singing & dance, although this sometimes can get you out of puff it does well for your lungs.
Bye for now
from Bianca
Hi Will!!!!! my name is meggan I have cf ( it stinks ) I cant beleave like
everyone that has cf hates ADEK vitamens i love them!!! I also love to
rollerblade I think having to do nebs is a real pain but I'll do um.
hi,my name is Paul and i have CF too.
I am 13 years old and i live in Ontario Canada.
I came across your site while doing a project for school.
And all i have to say is you have an awsome site.
It has made me relize that im not the only one that thinks having CF is hard.
I used to be worried about dying all the time because of the life expectancy but now i know alot of people live over it and now i dont have to worry so much about it.
And the poems i read on your site i like alot.
If i ever come up with one i'll be sure to send it to you.
Well i didn't really have much to say but i hope you keep adding to your site.
Oh and if you want write back.
I did :)
Hi my name is Kyle JM. I'm 8 years old. I have CF. I love to play hockey, soccer, baseball and I have my purple belt in karate. I don't let this disease slow me down.
my name is jacob i have cf and i live in australia and im 11 and i hate physio but i have to live with it.
Hello Dr.Bob , My name is Brandon.
this is Taylor and I love my ADEK vitamin chew ables !!!!!!!!!!!!!!!!!
hey there my name is david and i have cf boy let me tell you all that i have found is more medical conditions that are not cf related i also have a qustion is there any one out there that has cf and also has any blood cloting condition well i do and it really suck s i have had 2 strokes and 2 blood clots i almost lost my arn and the c3 in spine i have been so scared there is no one that has gone through this with cf so i have no one to talk to please help
thanks david
Hi My name is Haley i am 13 and have CF i love to talk to people you can IM me at lilpeanut948
Hi! I am 47 years old, and have a very mild type of cf. The only way we even found out about it was when our 11th child was born, and was sick. She had cf, so they tested our older children, and found that one of them had a different kind than the baby. The doctors couldn't believe that all of our children could have had both the same parents, and have been so many of them healthy. So, for the sake of my honour, I got tested. Our 18 year old daughter who has the same cf genotype as I do has no symptoms. The other children did not have cf, but they are all carriers of one sort or the other, because I have cf, and my husband is a carrier. Perhaps my slightly reduced lung efficiency is due to asthma, but I have never been hospitalized for cf, and just try to eat healthy, and walk. Our baby was not so fortunate, and had to take enzymes, and have a tummy tube, and be in the hospital a lot. If this story sounds hard to believe, that someone with a mild cf genotype could have had 11 children, and that my husband is a carrier, and we have a pretty "normal" life. God has been very good to us. Even seeing Ruthie's lovely spirit in the middle of her pain, and at such a young age, has been an inspiration to the rest of us. So there are doubtless many people out there who also have cf, who don't have the slightest idea! People who are healthy like me. But I can't eat junk food, or I get sick easily. If I eat really healthy things that are good for you, I hardly ever am sick. But, most people with cf really REALLY need to keep up on all of the things the Drs. tell you to do. Don't take my case as a regular cf story at all! Keep clearing out those lungs, and taking your enzymes! Love, Gail T.
my name is heather and i was diagnosed with cf when i was born...im 14
and just started high school but after 3days i had to go to the
hospital...i just got out but ill be on iv therapy for a while....i have 2
dogs 4 cats and 1 fish...i love reading and playing the flute....i have
one brother who doesnt have cf.....i have never ever met or talked to
anyone who has cf
Want to have something on the wall ? you know by now the e-mail sign below.