Thursday, March 24, 2011


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!)

Thursday, March 17, 2011

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!



Thursday, March 3, 2011

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

Tuesday, March 1, 2011

Lungers Playdate

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

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)