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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