Are you interested in finding out more about best practices for CF care in
children? My name is Dr. Susanna McColley, and I'm Head of Pulmonary Medicine
and the Director of the Cystic Fibrosis Center of Children's Memorial Hospital
and associate professor of pediatrics, Northwestern University's Feinberg School
of Medicine.

On behalf of Genentech, I'll be doing a webcast entitled "Creating a Road Map
for Early CF Care" on Thursday, June 25, 2009 at 8:00 p.m. ET along with my
patient Jake and his mother Kelly to give you the straight talk on how to manage
your child's CF. I'll also answer questions from the audience live. Visit
www.pulmozyme.com to register for this information-packed webcast and submit
your questions today!


Important Safety Information
Pulmozyme should not be used in patients who are allergic to any of its
ingredients. Pulmozyme should be used in conjunction with standard therapies for
CF. When starting Pulmozyme therapy, patients may experience change in or loss
of voice, discomfort in the throat, chest pain, red watery eyes, rash,
dizziness, fever, or runny nose. These side effects are usually mild and
short-lived.

Hey Everyone..PLEASE READ ! ! !

Growing up I never knew there CF Camps. I wish I did. Everyone talks about how 
much fun it was. My husband and I, he also has CF, went to CF camp from the age
of 7 till he was 18.

     I guess that is why this non-profit and our camp, Camp Mosquito, is so
important to me. Its important for CFers to meet other CFers. It is actually not
a CF camp but targets those suffering campers with Bronchiectasis, that's what
damage is done to the lungs of CF patients, either Primary or Secondary through
infections like in KS/PCD, and Congenital. KS and PCD are cilia diseases almost
like an identical twin to CF without the enzymes.

     This is the only Bronchiectasis focused camp in the world. I hope all of the
CF adults/Teens/ and families of the site's kids and teens 5 years and older
will give the camp a chance. We have medical personnel and are set up for
anything. As an example, a camper may need oxygen.  Although, we prefer campers
to be at least between 5 and 7 years old. But if they have siblings coming, are
mature, have mom coming too, or just really want to come, they are welcome if
they are 5 and older.There is always medical help on hand throughout the week.
We are set up for those on Feeds and 02. I came to camp on 02 before my
transplant! ! ! I'd also like to see some CF adults. I'd like to make some
friends.
Some of the activities include but aren't limited to this summer :

" The Blob "
Horseback Riding
Crafts
Banana Boat Rides
An Over Night Camp Out on Horseback ! ! ! !
SMORES and a bon-fire
BB Guns
Archery
Night hikes and plays
Crafts
Games
Lung Disorder Education
Waterpark
Etc
     We have so much fun. Everyone shows off their port-a-cath's and
G-tubes...lol. The cabins have electricity, A/C, hot showers, etc. We are even
set up for those needing oxygen or feeding tubes, insulin, etc. We know the
tricks that allow those on 02 to enjoy basically everything everyone else does.
Each room is set up by age and sex.
      We have so much fun as do the parents.

We love our parents.... We follow strict infection control guidelines ( No
history of Cepacia or those who have cultured MRSA in their lungs in the last 2
years. We also have them get a CF sputum test done in time for camp and they
must collect the last 12 months of sputum culture results and mail them to me so
a doc can look them over and decide if that camper is ok to come. They cannot
come until I receive everything. So far all the rules have worked beautifully 
), and in all 6 yrs not one camper has even gotten a cold let alone spread
anything nasty. In fact we've had some who's doctors have said their PFT's and
weight came up ! ! ! Lots of hiking if they can do it  ( We know those on 02 its
different ) and swimming.
     It is not just a CF camp but a camp for kids and teens with similar
disorders. They are identical lung wise they just don't have stomach problems as
you well know.
I am a nurse and wilderness First Aid Certified and other medical staff is
there. I'll talk about what Ive been up too....its kinda neat.

While I am well and not workingon camp stuff, I am working with a regional SAR
Group(search and rescue).

If you email me privately and request a read receipt to make sure I get it. I
can call you and talk about this more and answer any questions you may have. I
do have flyers and brochures. I am trying to fix up the brochures though. We
have 20 spots to fill and lots and lots of openings. Your child or children will
be safe. Plus it is something they will never forget. It is August 3rd-7th. Its
the only time I could get and they took off several hundred off the price of
registration. We do have somescholarships too.

     Also, please pass along this to all your CF Family Friends. The more we have
the better and wouldn't it be great for your kids to meet some of her or your
online friends ! ! !

     PLEASE  PLEASE help Pass this along ! ! ! Call me anytime with questions.
I'll send some brochures but please start recruiting campers and their families
ASAP. Adults with CF and their spouses are also welcome too.

We have 20 spots to fill. We need your help to try to fill them ! ! ! !

We'll also need a spuum in the Spring time and then send the results and all the
other results over the last 12 months to me. This way we can check for bad bugs.
Those with pseudomonas CAN attend.

Really think about sending your kids and think about coing yourself if you are
worried about sending your child to camp.

Also, if transportation is a problem, we can get mostcampers and staff free
airfare. A doctor must sign a release however. The campers family doctor is
fine. Either a regular doc, Urgent Care Center
( they do physicals ), Pediatrician or Internal Medicine Doctor.We get lots of
kids to fly in to the location and fly out each year.

Also, as an example of cross infection, I know that this is a scarythought but
my hubby has CF and I never got his and he never got mine.

Emailme privately ASAP so I can send you an application.If you email me, Ill
email back with camp photos. The little ones are sooooo cute.

Excuse any mistakes it's late.

Oh yah, most campers and staff members can fly for free via the
non-profit,ANGELFLIGHT. Contact me and I will let you know. Your Primary
/Family/Pediatrcian will need to sign a form. With that they can send me their
culture and their results from over the last 12 months.Then a doctor checks them
over if need be.


Thanks
Rebecca Snyder
Director
Camp Mosquito
904-699-2945
6011 Glenway CT
Richmond,Va. 23225

Dear All

Please find the results of our CF Research Blog

http://www.thepatientsvoice.org/Cystic_Fibrosis/

Feel very free to add any comments you may think will be of interest

Rgds

Belinda

ello,

Stanford Patient Education Research Center is conducting phone interviews with
adults who have CF.  The study looks at quality of life, coping, and support
issues and needs.  The study has been approved by the Stanford Institutional
Review Board (Protocol 15523).

I'm wondering if you could please be so kind as to post this recruitment flier
to your group?

The flier is below this email.

Thank you!

Kate Lorig, Stanford Patient Education Research Center
********************************************************************************\
****************

Are you interested in helping to improve the quality of life for people with
cystic fibrosis?


If so, Stanford Patient Education Research Center wants your help...

Who: We need patients, over age 18, to participate in telephone interviews. The
purpose of the study is to determine the following:
      * How patients cope
      * What the most important issues facing the CF community are
     * What programs or interventions can best improve your quality of life

Where: Interviews are conducted over the phone, so you can participate in
the comfort of your home

When: Interviews are beginning now! Schedule an interview at the most convenient
time for you

How: Contact Stanford researchers at CFinterviews@... to set up an
interview.

Interviews are anticipated to take 30 to 40 minutes.

If you have any questions regarding the study, you may email Kate Lorig at
lorig@....

Requirements:    * Must be 18 years of age or older
                           *Must be a patient with cystic fibrosis

Compensation:    Unfortunately we are unable to provide any compensation for
your time.

Thank you for your help in improving the lives of individuals in the CF
community!

For general information about participant rights, contact 1-866-680-2906

Announcing the CYSTIC FIBROSIS TEEN & ADULT DAY RETREAT 2009
Need support in dealing with the challenges of CF? Looking for some guidance in
the CF journey? Come to CFRI Retreat!  This is an amazing opportunity to connect
with others with CF in a fun and SAFE atmosphere. THE DATE is August 2 (Sunday)
to August 9 (Sunday), 2009.

I would like to personally invite you to an exciting summer event- the annual
CYSTIC FIBROSIS TEEN & ADULT DAY RETREAT sponsored by Cystic Fibrosis Research,
Inc., which will take place at the Vallombrosa Center in Menlo Park, California.

This retreat is a place for hope and healing as we learn more about CF and each
other. The retreat features educational workshops and support groups covering
medical issues, relationships, and coping. We also have lots of fun events
including arts and crafts, sports, talent shows and offsite activities.

The CFRI Day Retreat welcomes teens and adults 15 years and older with CF, their
spouses, family members and friends. However, due to cross infection concerns,
all people with CF are required to obtain a sputum culture before the start of
the retreat. People who have ever cultured Burkholderia cepacia, cultured
Methicillin-resistant Staphylococcus aureus (MRSA) within the past 2 years, or
are currently resistant to all antibiotics will not be allowed to attend.
Participants must comply with cross infection behavioral precautions.

The cost of retreat is $65 per person for the entire week and includes 3 meals a
day.  Daily fees are $15 per day. Overnight accommodations are available onsite
and locally. Scholarships are available!

Previous attendees have raved, " This was my first year.... what I did
experience was possibly life -altering.... the whole week was such an incredibly
therapeutic experience for me and my girlfriend. The hardest part was leaving."
-man with CF, age 31

"CFRI Retreat is such an important part of my life. It motivates me to take care
of myself, to live, love and cherish those around me. The friends I met there
are as close as family." -adult with CF, age 36.

"Retreat has been a transforming experience in my life.  I have learned so much
about how to take care of myself, and it inspires me to keep fighting.  The
friends I have made here understand my life in a way no one else I know does."
-adult with CF, age 27

Join us for a week of camaraderie, support, learning, and love. You are
guaranteed to leave touched by this fulfilling experience, having spent the week
or part of the week enriched by our community, sense of humor, depth and
creativity. Hope to see you there!

For more information, please contact Jessica Martens, Retreat Chair, at
jemartens@... or call at 650-404-9445, email cfri@... or visit
www.cfri.org

- Breathe well, Ana Stenzel
Co-Author "The Power of Two: A Twin Triumph over Cystic Fibrosis"
www.stenzeltwins.com

Hey everyone I really could use your help. I would like to have a
stamp made to help support cystic fibrosis.. At this time there has
never been a stamp for cystic fibrosis ever. I would like to change
all that as soon as possible however its going to take everyone to
get involved to help me. If cystic fibrosis was on a stamp it may
help with people understaning all about cystic fiborsis as well.
Other medical condions have a stamp so why can t we so im asking
everyone to please during the next month to write to the below
address and tell them how inportant it would be for you to see a
cystic fibrosis stamp in your time then metion that the cystic
fibrosis pen pal club and support group helped with this idea as
well. Ill be writting my letter within the next few days so please
take time to do this it only takes a few mins to write a letter
support for cysitc fibrosis is very inportant thanks so much for your
time your penpal david


Citizens' Stamp Advisory Committee
c/o Stamp Development
U.S. Postal Service
1735 North Lynn St., Suite 5013
Arlington, VA 22209-6432.

If you have any qustions please contact me if you have any qustions
at 1-612-282-1211 or 1-612-331-0152 thank you again david

Hey everyone cystic fibrosis chat is going on right now please come and
join us. The chat will go on for the next 5 hr the address for the chat
is at the following url http://www.chatzy.com/107598382207  This is are
new chat room and can hold up to 500 people at a time if you come to
the chat and can not get in please let me know it may mean that the
chat room is full. If you want to talk to me right away you may at
6122821211 the cf hotline talk to you all soon in the cf chat room  \

thank s
david

Hi, I just came back from the most AMAZING week at CF Retreat, in
Northern California. I had to share because it was so cool!!! My
heart is swelling with joy and comraderie, and I feel healthier than
ever after being with this fabulous group all week.

CF Teen and Adult Day Retreat is held every summer for people with CF
who are over age 15, and don't culture MRSA, b.cepacia or pan-
resistant pseudomonas.It is open to family and significant others
too. There were about 30 people, about half with CF- of those with
CF, about half had transplants. We had fun activities like a
scavenger hunt, kayaking, volleyball and art therapy . But also we
have deep, amazing support groups where we share so much not only
about living with cf, but about life in general- relationships,
goals, school/work, dreams, ect. It is truly a place where people
with a common bond share at the deepest level of love and
understanding, where there is a universality of experience and a
maturity of insight and wisdom that is shared among all. I left
feeling loved and understood,and my "gas tank" is full so I can deal
with CF again for the rest of the year. I definitely plan to come
back and encourage anyone needing support and wanting to have fun to
join next year- the first week of August in 2009. There is so much
talk that pwcf shouldn't hang out because of cross infection risks,
but there are so many safety measures at the Retreat I felt so safe.
All attendees have a pre-screening sputum culture, we can't sit next
to each other, we have separate rooms and bathrooms, we have purell
and chlorox wipes and masks/glove available, and we have alot of
activities outdoors.We are not allowed to serve ourselves meals but
can only be served by a person without CF. Whatever risks exists is
worth it to me because of the emotionally and socially healing energy
that I get from this group. I don't laugh or cry much except at
retreat. We love, we remember, we create, we express and we get great
meals and exercise. We also have educational workshops, like a doctor
from stanford coming to talk about sinus disease in CF. We hope
others out there can consider joining this amazing, life altering,
transformative experience in future years. Full scholarships are
available to assist with travel and accomodations. For more
information, see www.cfri.org and check out the CFRI Teen and Day
Retreat. Thanks for reading this.
ANA
Anana1872@...

If you are an adult cystic fibrosis patient using a PARI eFlow nebulizer
or provide care for a pediatric CF patient who uses a PARI eFlow
nebulizer, you might be eligible to participate in a one-on-one "PC
webcam interview" about nebulizer usage for inhaled CF therapies.



If you qualify and participate, you will earn $75 just for sharing your
opinions and experiences during a 60-minute PC webcam interview.
Additionally, we will send you, free of charge, a suitable webcam.



This study is strictly for marketing research purposes, and your
responses will be kept completely confidential.  There will be no sales
follow-up and your personal information will not be shared with anyone.



To see if you qualify and to schedule a suitable discussion time, please
take a moment and visit www.viewsthatmatter.com/cfstudy35



If you have any questions about this study, please call Kristie Foley at
770-982-6200 ext. 203 or email her at kfoley@....  By
participating you'll be helping others battle cystic fibrosis and
you'll earn money just for sharing your opinions and experiences.



Kristie Foley

Brandware Research

Atlanta, GA 31146

770-982-6200 ext. 203



[Non-text portions of this message have been removed]

My name is Renee, I am new to this group. I am a member to the cf
parent chat line.
I have a 5 year old son, Joshua with Cystic Fibrosis, Hydrocephalus,
Epilepsy, high blood sugar being controlled by a diabetic diet, has a
VP shunt on the right side of his brain due to the Hydrocephalus, and
has a feeding tube in his stomach. Joshua was 6 months old when we
were told he has CF, and Hydrocephalus, 7 months old he had brain
surgery to have the VP shunt put in, 17 months old when he had the
feeding tube put in. Everything settled down for a while until Joshua
had his first seizures at 4 years old. Amitted in the hospital for
test, the EEG was not normal it showed Josh has epilepsy. Josh had a
second seizure different from the first one so he has to have a 8 hour
EEG study. The study will show if Josh will have different seizures or
not. If he will then the medicine he is on now has to be changed.

Renee
caringbridge.org/visit/joshuamatlock

MY PRECIOUS SON MALACHI BORN W/CF 1976 KS/NOW MO. HOME>HOSP EMAIL SENDS
PATIENTS YOUR NOTES!!BARNES JEWISH;ST LOUIS,MO./ALSO HOPEING TO FIND
OLD FREINDS FROM CAMP MITIOG-LAKE DONIPHAN-EXCELSIOR SPRINGS,MO. TO
OO /HE IS GETTING LUNG TRANSPLANT 'TESTS'& ANTIBOITICS,ETC...OVER 100
MI FROM HOME...STILL NEEDS CAR!!!LOV TO HEAR FROM YOU ALL!!'GOD BLESS
YOUR EVERY BREATH!!"

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Dear Rebbecca,

I hope I have the name right.  Can I send you a machine. I feel really
bad about your situation.  May I have your permission to send you a
machine for 2 or 3 weeks and see if it makes a difference.  If it
doesn't just mail it back to me (at my expense).l

I don't have CF, but I use to have crippling sinusitis, bronchitis,
along with painful and constant lung, throat, & sinus infections.  I
was practically taking anti-biotic all the time.

Then I tried this new technology that made a huge difference. I
couldn't believe that I went from sick all the time to hardly ever
sick.  Since that time, I used my engineering skills and actually
developed my own line of machines.  They are great for allergy and
asthma sufferers, but to be honest we never had anyone try it with CF.

Recently, a friend of mine contacted me and told me that his assistant
has a daughter with RSV. I went over to his work and told her to try
it for two weeks.  Her experience is now on my main testimonial in my
new tri-fold brochure.  You can see it at:

New Brochure: www.airfantastic.com/pdf/airfanbrochure.pdf

Please email me so that I can send you this unit at no charge.  I hope
it makes a big difference.  You can email me at markm@....

Mark Mueller
President,
Air Fantastic, LLC
Austin, TX





--- In cysticfibrosissupport@yahoogroups.com, "Becki Snyder"
<prograf_princess@...> wrote:
>
> Hey Guys
> Brad was supposed to go back to work today at the police dept, was
already
> to leave and the doc faxed the police dept. That he couldn't come
back. We
> are furious. If he loses his job, I am finding a new TX center. I
only get
> alone with one of the doctors anyway. He can't do desk duty b/c he's
new and
> doesn't know what to do. I don't know what's gonna happen. If he
loses his
> job, he'll be devastated. The thing is, he's better. His lung
function is
> higher than mine for goodness sake. He's stir crazy to say the
least. He's
> done about a month of IV's. They haven't even seen him. We aren't
getting
> any money either while he's home. His benefits haven't kicked in yet.
> Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr. I hope he can keep his job,
the doc
> say he can't resume duty until the 9th.I am so nervous for him my
stomach is
> tied in knots.He'll be just devastated.
>
> We met the new CF doc yesterday and he was great, new antibiotic
methods and
> everything. Very aggressive. He follows the Danish Method of
treatment. They
> thought he'd been on IV's too long and on the wrong ones.But didn't
want to
> step on any toes this time. HE'll handle the next time he gets sick.
Mayo's
> great for end stage lung disease but knows little about CF
maintance.I am
> hoping maybe he has some ideas or can refer me to another GI doc for my
> chronic pancreatitis.
>
> Hopefully we'll start going to the gym tomorrow. I have been bugging
brad to
> go for awhile now. I need to learn how to run and build up my
strength. I am
> planning on the Transplant Olympics in July so I need to start
training.Not
> sure what I'll do though...swim maybe. I'll see.I am looking forward
to it
> though. We have Camp Mosquito June 16-20th ( I have planned the coolest
> stuff. It'll be the best year yet )and then the TX Olympics is
around July
> 9th. I will be applying for a scholarship to attend.
>
> On a good note. I did my lung function testing and its up higher
then its
> been in 2 years.My bronch was also clean.The RSV I had around
Christmas time
> was gone thank goodness. That was horrible. Made me remember pre
transplant
> life with CF. Coughing all night and stuff. I even had to do nebulizer
> treatments again. I haven't done any neb treatments in 3.5 years! ! ! !
> Thanks to a double lung transplant.
>
> My chronic rejection must be in hybernation.I've been in chronic
rejection
> for 3 years now. Since about 8 months post transplant from stupid acid
> reflux.My lung function dropped big time at first. It dropped like a
rock.
> It would stablize and would drop a little then stablize and drop a
little.
> Its been doing that for three years.Maybe with some hard exercise
and if I
> can ever figure out how to run, it'll get even higher.Proof that Chronic
> rejection doesn't have to be a death sentence. So if anyone is told they
> have BO or chronic rejection its ok to be worried but don't
automatically
> think your about to die. I am too stubborn to think I won't be ok.
Now only
> if my pancreas would work or at least stop hurting.I plan on going
back to
> school again this summer or so. I took this year off for health
reasons and
> for financial reasons.
>
> This summer will be my 9th wedding anniversary.
> We married young.On our tenth we plan on having a wedding ceremony. We
> married at the justice of the peace b/c I was losing health
insurance so we
> never had a wedding. Plus it would be nice to get married without
oxygen! !
> ! !
> I found this church in St. Augustine, its a little stone church I
want to
> use.Then have a reception at one of the bed and breakfasts there.
We'll pay
> for the wedding. We'll make our own invitations on the computer. You can
> make really pretty ones with ribbons and everything. We have no
friends so
> it'll be a small wedding and mom says grandma won't come to my
wedding so ..
> .....
> I just want the church, dress, tux, and pictures. For a honeymoon,
more than
> anything, I want a tour of Eastern Europe. Buy a rail pass and go to
Germany
> ( we are very very German)Switzerland ( we come from there too plus its
> beautiful )Sweden,Belgium,and Ireland ( m3rd generation Irish ).
They are
> all interconnected and one pass pays for you to go to all of these
places.
> Mom said they'd pay for a honeymoon but I'll believe it when I see
it. We
> don't want flowers and expensive pieces for the church, just a dress.
>
> Anyways...Its almost 6:30 now.
>
>
>   
> Sincerely,
> Rebecca R. Snyder
> Director
> 29 year old w/ Cystic Fibrosis, Chronic Pancreatitis, Diabetes,
Double Lung
> Transplant '04, GJ Tube
> YOUNGLUNG Support Services, Inc.
> 1721 Anniston Rd#112
> Jacksonville, Florida 32246
> YOUNGLUNG GROUP
> www.younglung.org
> YOUNGLUNG E-GROUP
> http://health.groups.yahoo.com/group/YOUNGLUNG/
>
>
>
> [Non-text portions of this message have been removed]
>

Announcing the CYSTIC FIBROSIS TEEN & ADULT DAY RETREAT
and CFRI ANNUAL EDUCATIONAL CONFERENCE

RETREAT: August 3– August 8, 2008
Located at Vallombrosa Center in Menlo Park, California
This Year's Theme:  CF Club Med: Retreat of a Lifetime

Meet Some Great Friends!Feel Like You're Not Alone!
Learn more about taking care of your CF!
This is a place for hope and healing!

Featuring workshops on relationships, music and art therapy,
psychological issues, and career planning, as well as many outdoor
exercise activities.

Who Can Come: Teens and adults 15 years and older with cystic
fibrosis, their family members, friends and health care providers

Purpose of the Day Retreat: The retreat provides a safe and welcoming
environment aimed at enhancing positive coping skills, social support
and education for people who share common experiences with CF.

What We Do: Activities that promote health include daily exercise,
arts and crafts, rap sessions, and educational workshops with guest
speakers.  Fun group-bonding activities include a talent show, games,
and just hanging out getting to know others.

Cost: $65 per person for the entire week.  Daily fees are $15 per day
for visitors or $10 per meal for those who drop in for a meal only.
Overnight accommodations and transportation are the responsibility of
participants. Scholarships are available for those unable to pay
fees.

Safety:  All people with CF are required to comply with cross
infection behavioral precautions. A medical advisor is available at
all times, and volunteers are available to assist with respiratory
treatments.  Participants with CF must obtain a sputum culture before
the start of the retreat.
People who have ever cultured Burkholderia cepacia, cultured
Methicillin-resistant Staphylococcus aureus (MRSA) within the past 2
years, or are currently resistant to all antibiotics will not be
allowed to attend the retreat.

We'd Love To See You There!
---

ALSO: The CFRI 21st Annual Education Conference "Living a Medical
Miracle: CF Today and Tomorrow"  August 1-3, 2008 at the Sofitel San
Francisco Bay, Redwood City, California.
Featuring distinguished CF physicians and researchers to discuss
topics such as diabetes, infection control, airway clearance, latest
research, and complimentary medicine.

For more information and applications to both events, see
www.cfri.org OR please contact:
Cystic Fibrosis Research, Inc. www.cfri.org
2672 Bayshore Parkway, Suite 520, Mountain View, CA 94043
Phone: (650) 404-9975/ Fax: (650) 404-9981

Hope to see you there!

Ana Stenzel
CFRI Volunteer

Does anyone use lubiprostone for the treatment of bowel obstructions? How is it?
It's a new chloride channel opener for the gut that is supposed to help chronic
constipation but I'm not sure if it's been used in CF. My doc didn't  know it.

Thanks!
Ana

Breathing Deeply!
Co-Author,"The Power of Two: A Twin Triumph over Cystic Fibrosis"
www.stenzeltwins.com

---------------------------------
OMG, Sweet deal for Yahoo! users/friends: Get A Month of Blockbuster Total
Access, No Cost. W00t

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Anabel and Isabel Stenzel are identical twins with cystic fibrosis
from the San Francisco Bay Area. Their recently written memoir, "The
Power of Two: A Twin Triumph over Cystic Fibrosis" was released last
December by the University of Missouri Press. This coming-of-age
story depicts one biracial family's journey raising twins with CF who
ultimately both receive life saving lung transplants as adults. With
candor and humor, the twins poignantly share their symbiotic
relationship, their determination and discipline in the face of a
rigorous medical regimen, and the lessons gained from having CF. They
pay tribute to their CF community and their donor families.

People magazine said "the connectedness of twins shines through" in
this "grippingly honest" memoir. One CF teen said, "I read your book
& I loved it... I now have realized anything is possible in life even
if you do have CF. Nothing can stop you from living an ordinary life.
I now have faith that I can overcome this disease and enjoy life...
This is the best gift ever." One grandmother of a CF child
said, "Your book, the best I've ever read in my life, has greatly
lessened the dread I've been feeling for the futures of my
grandchildren."  Frank Deford remarks that "The Power of Two"
is "always powerful and filled with life and spirit." Boomer Esiason
also says this is a '"book of hope and a must-read for any parent of
a CF child or any person living with CF."

The book is available at Amazon.com, Barnes & Noble.com and
Borders.com, or directly from the publisher,  The University of
Missouri Press, at http://press.umsystem.edu

Next month, the twins will be traveling around the country to speak
about their story and promote "The Power of Two."  If you have
friends or family who may be interested in hearing their story and
meeting them in person at one of the events planned so far (dates and
locations below), please them know about these events.  You can find
more details at  http://www.stenzeltwins.com/11.html.

Upcoming Bookstore Signings:
April 19: Del Mar, CA (San Diego area)
April 23: Albuquerque, NM
April 30: Baltimore, MD
May 5: Pittsboro, NC (Raleigh/Durham/Chapel Hill area)

Upcoming Presentations/Other Events
April 26: Chicago, IL - CF Family Education Day
April 28: Norfolk, VA - CF Family Education Day
May 1: Fairfax, VA- CF Educational Group
May 3: Gastonia/Charlotte, NC - CFF Great Strides
May 17: Omaha, NE - CF Family Education Day
May 31: Philadelphia, PA - CF Family Education Day

Thank you for your consideration. We hope you enjoy our story!
Wishing you all good health!
Anabel and Isabel Stenzel
www.stenzeltwins.com

Hey Guys,
I don't write in much. My name is Becki, I am 29yo and live in Florida. I
also have CF,diabetes,and had a lung transplant.I also had an interstitial
lung disease before my transplant. I also have chronic rejection but its
mild to moderate.

Plus I run a camp for kids, teens, and young adults with chronic lung
disease called Camp Mosquito. I just updated my MYSPACE Page and would love
it if I could make some more friends on there.
www.myspace.com/cysticfibrosisprincess


Many may remember me from my e-group YOUNGLUNG which is a online support
group for teens and adults with chronic lung disease. Its gotten really
quiet lately mainly b/c after my transplant I wasn't online as much but
really want to build it up again and would love if more people would join
the e-group and post their story. Its through Yahoo.The addy to my
organizations webpage and e-group is in my signature. The e group is pretty
cool b/c you can talk about anything and it is moderated to keep spammers
outa there. Its for males and females and anyone over the age of 12. I hope
we can get it up and running again like it used to.

If anyone is interested in our camp please email me privately. We have
strict infection control guidelines and have never had any cross infection
issues. We go swimming and hiking, and play games and have whip cream waters
and water wars and have a lake zipline and all sorts of night activities
plus lots more. I went to camp on oxygen before my transplant so that's not
a deterant. Plus most can get free airfare and we do have scholarships.
Naptimes are daily events for those who need them. The camp is medically
supervised. Its a lot of fun. I have a number of articles proving the
benefits of kids with CF and similar disorders attending camp and articles
proving it is possible to attend these camps and not contract any bugs from
other campers. We do not allow campers with MRSA or Cepacia.
As a kid I never knew anyone like me and wish I did. I was teased at school
for missing to many school days, being to skinny, having a prednisone face
and taking meds as well as coughing and wheezing all the time. Mostly b/c I
rattled when ever I took a breath.

Anyways, please check out my MYSPACE PAGE,my pics on it as well as some
other pics in the pic section, and check out the email group. The website
have a medical library and more.
  
Sincerely,
Rebecca R. Snyder
Director
29 year old w/ Cystic Fibrosis, Chronic Pancreatitis, Diabetes, Double Lung
Transplant '04, GJ Tube
YOUNGLUNG Support Services, Inc.
1721 Anniston Rd#112
Jacksonville, Florida 32246
YOUNGLUNG GROUP
www.younglung.org
YOUNGLUNG E-GROUP
http://health.groups.yahoo.com/group/YOUNGLUNG/



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Hey Guys
Brad was supposed to go back to work today at the police dept, was already
to leave and the doc faxed the police dept. That he couldn't come back. We
are furious. If he loses his job, I am finding a new TX center. I only get
alone with one of the doctors anyway. He can't do desk duty b/c he's new and
doesn't know what to do. I don't know what's gonna happen. If he loses his
job, he'll be devastated. The thing is, he's better. His lung function is
higher than mine for goodness sake. He's stir crazy to say the least. He's
done about a month of IV's. They haven't even seen him. We aren't getting
any money either while he's home. His benefits haven't kicked in yet.
Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr. I hope he can keep his job, the doc
say he can't resume duty until the 9th.I am so nervous for him my stomach is
tied in knots.He'll be just devastated.

We met the new CF doc yesterday and he was great, new antibiotic methods and
everything. Very aggressive. He follows the Danish Method of treatment. They
thought he'd been on IV's too long and on the wrong ones.But didn't want to
step on any toes this time. HE'll handle the next time he gets sick. Mayo's
great for end stage lung disease but knows little about CF maintance.I am
hoping maybe he has some ideas or can refer me to another GI doc for my
chronic pancreatitis.

Hopefully we'll start going to the gym tomorrow. I have been bugging brad to
go for awhile now. I need to learn how to run and build up my strength. I am
planning on the Transplant Olympics in July so I need to start training.Not
sure what I'll do though...swim maybe. I'll see.I am looking forward to it
though. We have Camp Mosquito June 16-20th ( I have planned the coolest
stuff. It'll be the best year yet )and then the TX Olympics is around July
9th. I will be applying for a scholarship to attend.

On a good note. I did my lung function testing and its up higher then its
been in 2 years.My bronch was also clean.The RSV I had around Christmas time
was gone thank goodness. That was horrible. Made me remember pre transplant
life with CF. Coughing all night and stuff. I even had to do nebulizer
treatments again. I haven't done any neb treatments in 3.5 years! ! ! !
Thanks to a double lung transplant.

My chronic rejection must be in hybernation.I've been in chronic rejection
for 3 years now. Since about 8 months post transplant from stupid acid
reflux.My lung function dropped big time at first. It dropped like a rock.
It would stablize and would drop a little then stablize and drop a little.
Its been doing that for three years.Maybe with some hard exercise and if I
can ever figure out how to run, it'll get even higher.Proof that Chronic
rejection doesn't have to be a death sentence. So if anyone is told they
have BO or chronic rejection its ok to be worried but don't automatically
think your about to die. I am too stubborn to think I won't be ok. Now only
if my pancreas would work or at least stop hurting.I plan on going back to
school again this summer or so. I took this year off for health reasons and
for financial reasons.

This summer will be my 9th wedding anniversary.
We married young.On our tenth we plan on having a wedding ceremony. We
married at the justice of the peace b/c I was losing health insurance so we
never had a wedding. Plus it would be nice to get married without oxygen! !
! !
I found this church in St. Augustine, its a little stone church I want to
use.Then have a reception at one of the bed and breakfasts there. We'll pay
for the wedding. We'll make our own invitations on the computer. You can
make really pretty ones with ribbons and everything. We have no friends so
it'll be a small wedding and mom says grandma won't come to my wedding so ..
.....
I just want the church, dress, tux, and pictures. For a honeymoon, more than
anything, I want a tour of Eastern Europe. Buy a rail pass and go to Germany
( we are very very German)Switzerland ( we come from there too plus its
beautiful )Sweden,Belgium,and Ireland ( m3rd generation Irish ). They are
all interconnected and one pass pays for you to go to all of these places.
Mom said they'd pay for a honeymoon but I'll believe it when I see it. We
don't want flowers and expensive pieces for the church, just a dress.

Anyways...Its almost 6:30 now.


  
Sincerely,
Rebecca R. Snyder
Director
29 year old w/ Cystic Fibrosis, Chronic Pancreatitis, Diabetes, Double Lung
Transplant '04, GJ Tube
YOUNGLUNG Support Services, Inc.
1721 Anniston Rd#112
Jacksonville, Florida 32246
YOUNGLUNG GROUP
www.younglung.org
YOUNGLUNG E-GROUP
http://health.groups.yahoo.com/group/YOUNGLUNG/



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Hi
Any teens or adults here have a feeding tube.I have one but done use it much
I know I know but if I eat why use it.Plus unplugging and plugging to go the
bathroom is a pain.I go the new zyvex mini pump in a back pack..pretty cool
but I still fight it.
 
Sincerely,
Rebecca R. Snyder
Director
29 year old w/ CF, Chronic Pancreatitis, Diabetes, Double Lung Transplant
04, GJ Tube
YOUNGLUNG Suppport Services, Inc.
1721 Anniston Rd#112
Jacksonville, Florida 32246
YOUNGLUNG GROUP
www.younglung.org
YOUNGLUNG E-GROUP
http://health.groups.yahoo.com/group/YOUNGLUNG/



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My Update


Well I came home from the hospital and picked up a chest
Infection......IV's for Christmas.I just don't want to end up in the
Hospital for the holidays.So that's why Im doing IV's.They wanted me to
Go in but I wanted to try this first. These infrequent infections
Remind me of life pre-Tx. Errie...................

Oh Yah,
Im on Tobi inhaled and nebs again too.Just temporary.I dont have pseudo
anymore.



 
Sincerely,
Rebecca R. Snyder
Director
29 year old w/ CF, Chronic Pancreatitis, Diabetes, Double Lung Transplant
04, GJ Tube
YOUNGLUNG Suppport Services, Inc.
1721 Anniston Rd#112
Jacksonville, Florida 32246
YOUNGLUNG GROUP
www.younglung.org
YOUNGLUNG E-GROUP
http://health.groups.yahoo.com/group/YOUNGLUNG/


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I read your profile today, I thought I would drop you a line and hope to become
your friend! Check my personal page here:
http://girlgxblog.googlepages.com/girlrider.htm

HI GUYS MAY NAME IS BRIAN. 31YRS OLD CF SINCE BIRTH. KNOW JEREME PIERCE
SINCE CF RETREAT 1998

BRIAN TACKE

I created this cool friends network and added you to my friends network. Hit-up
now:
http://makegirlfofriend.googlepages.com/girlfriends.htm

I am now to be referred to as Dr. Jenkins haha ;) Took me about a month to get
fully accredited, but after ringing these ppl 415-267-3940 they got me setup
at an international uni and had me my BA in no time.

Just got my BS and i wasnt even required to turn up! Just called these people
1-415-267-3940, filled out a few forms and  a bit of paperwork and was
accredited
within 3 weeks at an internationally recognised Uni! How good is that!

Just got my masters in Science and didnt even have to turn up to class...
how good is that? Just phoned these fellows 415-267-3940 and they got me fully
accredited at an         overseas uni in less than a month! Very happy right
now.

I cannot sleep tonight so I was trying to figure out MySpace since I have a
page. I looked up Cystic Fibrosis and found this video.I have never seen
such a beautifully put together video.I sobbed.Even as my feed pump was
alarming like crazy.....I just turned the sound up....lol

It seems I need some friends....I have not one on MySpace.....lol

I thought good doing one up for the camp I do but this is ..... I am
speechless. Everyone should hear. However, the song mentions God so if you
do not listen or believe in God do not yell at me please,I get all upset and
feel horrible. Its just so well put together.

I would also like to have anyone join My group of blogger's or whatever, so
I am not such a lonely dork....lol

My Addy is :
http://www.myspace.com/cysticfibrosisprincess

The video is in the Blog section . . .
 
Sincerely,
Rebecca R. Snyder
Director
29 year old w/ CF, Chronic Pancreatitis, Diabetes, Double Lung Transplant
04, GJ Tube
YOUNGLUNG Suppport Services, Inc.
1721 Anniston Rd#112
Jacksonville, Florida 32246
YOUNGLUNG GROUP
www.younglung.org
YOUNGLUNG E-GROUP
http://health.groups.yahoo.com/group/YOUNGLUNG/



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Hi
My name is Becki. I want everyone to introduce themselves to everyone with
their stories.Chronic Pancreatitis,yada,yada,yada.I am 3 yrs out of TX.I
also had an interstitial lung disease that made things worse.I was full of
infection and secretions plus I had no reserve volumn or FVC or Total Lung
Copacity. My FEV1 at Transplant was 10% and on 15L.Not good.

I have a feeding tube. A GJ tube and use the new ZYVEX machine ....its the
size of your hand.I am using Perative.Its already broken down.So my pancreas
doesn't have to work so hard.

I also have chronic rejection but its not too bad.....Bronchiolitis
Obliterans. Or BO.

We have some pics in the pics section.Plus some links and info.

We also have a camp for kids and adults with CF and similar disorders like
ILD's and Bronchiectasis.


Sincerely,
Rebecca R. Snyder
Director
29 year old w/ CF, Chronic Pancreatitis, Diabetes, Double Lung Transplant
04, GJ Tube
YOUNGLUNG Suppport Services, Inc.
1721 Anniston Rd#112
Jacksonville, Florida 32246
www.younglung.org


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Subject: My introduction...I have CF and an ILD

Hi
My name is Becki. I want everyone to introduce themselves to everyone with
their stories.Chronic Pancreatitis,yada,yada,yada.I am 3 yrs out of TX.I
also had an interstitial lung disease that made things worse.I was full of
infection and secretions plus I had no reserve volumn or FVC or Total Lung
Copacity. My FEV1 at Transplant was 10% and on 15L.Not good.

I have a feeding tube. A GJ tube and use the new ZYVEX machine ....its the
size of your hand.I am using Perative.Its already broken down.So my pancreas
doesn't have to work so hard.

I also have chronic rejection but its not too bad.....Bronchiolitis
Obliterans. Or BO.

We have some pics in the pics section.Plus some links and info.

We also have a camp for kids and adults with CF and similar disorders like
ILD's and Bronchiectasis.Pre=teens, teens,and adults should join YOUNGLUNG !
! ! YOU can laugh cry vent or whatever suits your needs.
 
Sincerely,
Rebecca R. Snyder
Director
29 year old w/ CF, Chronic Pancreatitis, Diabetes, Double Lung Transplant
04, GJ Tube
YOUNGLUNG Suppport Services, Inc.
1721 Anniston Rd#112
Jacksonville, Florida 32246
YOUNGLUNG GROUP
www.younglung.org
YOUNGLUNG E-GROUP
http://health.groups.yahoo.com/group/YOUNGLUNG/


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Anyone going to Central Florida Ed Day? I am going ! ! ! It would be great
to meet ! ! ! !I hope to see ya there ! ! ! I can't wait to meet Aunt Bev !
! ! Ive been on here since I was a teenager and now I am almost 30 ! ! ! And
3 yrs post-tx.

Sincerely,
Rebecca R. Snyder
Director
29 year old w/ CF, Chronic Pancreatitis, Diabetes, Double Lung Transplant
04, GJ Tube
YOUNGLUNG Suppport Services, Inc.
1721 Anniston Rd#112
Jacksonville, Florida 32246
www.younglung.org


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