Greatness

so yeah, yesterday was an awesome day!
no work or school so it was stress free.
went to a park with Dylan.
took lots of pictures!
was fun to get out of the house for once.
it was so nice out! (it was a bit too hot though)
I thought this would make a good blog, but I cant really think what else to say.
it was just an amazing day!











Also! keep up the donations to Bush's Team Breathe for this years GreatStrides walk to cure Cystic Fibrosis!

my Tshirts are in!

Hospitalization

Hey all,
as many of you know, I've been in the hospital since Tuesday.
Past few weeks I've been feeling worse and worse. finally after a bit of nagging from my friends, mom & boyfriend I decided to go to the ER. didnt plan on getting admitted. but I did. not long. 3 days. it wasnt bad (except the food was horrible).
the room was amazing. the nurses, techs & phlebotomists were good.
I did flip shit on one doctor (new guy) who was completely arrogant, and WRONG! lol.
he kept avoiding my questions and then tried to explain something about a pacemaker to me. and he was dead wrong. which made me mad. so yeah, I yelled. and stormed out of the room. I didnt see him after that lol. a different doctor came in the next day, he was great, answered all my questions. gave me the names & numbers of a bunch of new peds cardiologists. and a new pulmonologist. also gave me some new meds and put me on nebs Q4hrs for the first few days, then Q8. then once daily. then as needed.

so yeah, initially they thought it was congestive heart failure. which thankfully it was not. I do however have bronchitis, and fluid around my lungs.

which means antibiotics, nebs, & water pills! OH JOY!

anyway my BF rocks for taking me to the ER, staying with me for hours, picking me up, and babysitting my car. (on top of the fact that he just rocks in general!)

Katie's Conquest!

Katie hates to ask for help, she is usually a very quiet and independent person but she can no longer fight this battle alone. So I have decided to step in and get involved, to share her story, and give her some hope!

Katie is in chronic rejection and her transplant center is no longer going to fight with or for her, so she needs to switch centers ASAP as her condition is deteriorating rapidly. Her goal is to get switched to Duke University by next month, the problem is she doesnt have any finalcial help or means to get her there. She is also very unstable in her health to the point where she needs there to help her in case she cant help herself. So she looking for someone in the area (of Duke) who knows anything about transplant patients..

Please let me know if you can help in anyway...



Back story on this doctor:
his name is Dr.Baz.
he has a history of giving up on CFers.
my friend Kitty (Stephanie Steele) for one.
he feels his job is done once the transplant is complete.
he is not willing to try different medications.
if the first cocktail he puts you on doesnt work. he gives up.
he doesnt believe there is a difference between acute & chronic rejection.
he needs to lose his medical license! so we can stop losing CFers!

also, when she asked him if she could get a double lung instead of single lung he threatened to take her off the list entirely!

HE NEEDS TO GO!





PLEASE HELP KATIE GET ANOTHER CHANCE!!!

Cardiac Update

Just got home from having my pacemaker checked.
They say my battery has another year on it, but then again, last time they told me that, I was on the table 2wks later!
they Also saw an increase in arrhythmias, I've had 13 since the 28th of feb.
and although they dont last long (usually about 2mins), they're actually affecting me. I'm always tired lately.
my pacemaker has been switching modes more often too.
(10 times, in the past 3 days) this happens when my heart rate goes up to 155+
(which it should never do) so yeah, they had me in the chair for over an hour,
called in the doctor who was there. who proceeded to call my doctor.
and suggested a holter monitor. yet again. I also may be switching hospitals!
which is exciting. *claps* anyway. thats about it

Lungers Playdate

So yes!
the long overdue blog post about the exciting day I had on the 19th of Feb.
LUNGERS PLAYDATE!

A bunch of Lungers collected at my house, we mingled, and talked, and other exciting things. lol.

then we went to visit Cindles in the hospital! armed with balloons and gifts!

then we went to TGIF and that was awesome. we're obnoxious! LOL our waiter was fun!
Laura & I danced with an old dude. Dylan made a mess. Mebsie wobbled around lol.
and Daniella jumped on my back and surprised me!

after dinner & a few drinks we went back to my house. Patti unfortunately had to leave then.

Dylan & Laura stayed a bit longer :)

and of course mebsie stayed for a few days!!

overall, it was fun!

now for a few pix,

(theres lots on facebook)

Excitement Overload

Where to start where to start?!

I'm selling purple CF wrist bands that say "Breathe Easy Cure Cystic Fibrosis"
$3.00 each! message me on facebook for more details!



I'm also selling Scentsy! Check it out!
Its awesome stuff! Much more fiscally responsible than a yankee candle as they last much longer and the fillers are only a few dollars. they're flameless, there hundreds of warmers to chose from, and over 80 fragrances.




Work has been absolutely insane lately! I worked th past 4 nights. 3-11:30pm. last night I worked 1-11:30pm. and we were short like 3 nurses.

Friday was an unpleasant night, it started out with us calling a Rapid Response at 3:30. thus pushing us back about 2hrs. The family of this person hadnt been fully educated on what "DNR" meant, so they were following the nurse around all night. Finally when his blood pressure got around 40/30 she had to explain to them that he was going to die. and he did. right at the end of the shift. I cried. Its never easy to lose a patient. Especially when they are so loved by their family.

Saturday wasnt too bad, it had its crazy moments, but overall, a decent night.

Sunday night we had this woman come up from the ER. from the moment I saw her I knew it was going to be an interesting night. she was fussing and screaming. turns out this little old woman was 90 yrs old. and God Bless her! she put up some fight! If I have that kind of energy when I'm 90 that would be awesome. but anyway. It took myself, a male tech, a nurse & a house doctor, and 45mins later we finally had wrist restraints on her. It took about 12 attempts before we finally got her BP too! unfortunately she was very confused, kept carrying on about dogs coming down from the ceiling and such. I must say though, thankfully she was in for dehydration, because if not, we would have been covered in spit! We all walked away with bruises from being kicked and punched, and scratches from being bitten and clawed at.





And last night we (Monday) had a man detoxing, and I've seen him sober, and hes really a nice guy, but holy hell, when he is detoxing! I ended up having to call Code Grey (security) and like 6 big muscle dudes had to come hold him down so we could restrain him for his own safety, as he cant ever stand up without falling over. and he pulled out his IV about 4 times, and trust me, getting an IV in a man who just wants to flail around is no easy task. and his flailing and desire to get up lasted the entire 10yrs I was there.


ALSO!, this weekend I've organized a 'Lungers' playdate! lots of my lovely CF friends are coming out to spend the weekend! I'm totally psyched!!


And finally, dont forget to sponsor me in this years greatstrides walk for CF!!

(I'm also selling Tshirts for Bush's Team Breathe!)

Here it comes again

Yeah, in another 'I hate CF' mood.
went to a friend's funeral last night.
I did ok for the first few mins.
but it didnt last. I cried for about 1 1/2hrs straight.
and as we all know crying always makes breathing more difficult.
so of course I had a bit of an episode. started wheezing and gasping in the back of the room.
and I'm the idiot that left her inhaler in the car.
a random lady handed me a tissue, which didnt help the breathing situation, but it gave me something to squeeze. which helped.

one thing the deacon said hit me. he said "there is no good age to die, but 25 is way too young"

and its so true.

CF, you need to take a time out and think about what you've done.
because as it stands now, the median age for someone with CF is 37. this means that 50% of people with CF will die before that age.

with CF walk-a-thon season quickly approaching theres never been a better time to get the word out about CF. its time to get more people aware. more people donating. so that more research can be done to prolong the lives and eventually cure those with Cystic Fibrosis.



Picture I made in memory of Tina <3
4/6/85-1/23/11



LINKS OF INTEREST:

Instructional video about CF patients that Tina & her father were asked to participate in. She does a fabulous job, and her father really hits hard on the reality. its about 20mins. but its worth the watch!!

My GreatStrides donation page.