Be Bigger Than Yourself! (and an update)

So, it has been a long, LONG time since I did a blog.
A ton has happened, most of which I'm not really going to get into because it's old news.
Short version: got referred to another hospital for my cardiac issues, found new heart problems, started new meds, increased those meds twice, if I increase again I'll be on the max dosage and then will be looking at surgery because my problems will continue to increase over time. I am officially on disability after over a year of fighting for it. I want to move out but realistically can't afford it, not if I want to stay in NJ (which I do). I stopped my mood stablizers due to side effects. Without them I seem to have zero motivation for anything and it's starting to bum me out. I haven't been able to travel due to my dog's health. He is 14+ years old and his health seems to go downhill if I leave. My last trip was in July, I went to the Transplant Games of America in Texas with a good friend. It was a great experience but my dog didn't handle it well. So I'm stuck home until I'm forced to go to Florida in November. (or until he dies *sadness*)


Now for the fun stuff!:

I am now an official intern for the More Than Just Me Foundation! 
Why? Well because the MTJMe foundation developed something called the Saltwater Challenge. (inspired by the Ice bucket challenge) and yours truly not only participated in it but also recruited the marketing team at the global medical supply company BD to participate as well.  Okay, I can't take all the credit, my mom works at BD.  Anyway, roughly $600 was raised. My mom also applied for company gift matching, and it was approved. So all in all around $1100-1200 was raised. I was contacted by the founder of MTJMe with the opportunity to become an intern for them, and of course, I jumped right on that! We all know I bleed CF awareness. MTJMe focuses on raising awareness for multiple causes including helping the homeless and Cystic Fibrosis. I'm super proud to be a part of the awesomeness that is MTJMe!


Things to check out!:

My Saltwater Challenge video!

The BD Marketing Team doing the challenge!

Sarah needs YOUR help!

"I'm not going for easy, I'm just going for possible" 

- Janet Murnaghan. (Sarah's mother)

This beautiful, brave little girl is Sarah Murnaghan.  Diagnosed with Cystic Fibrosis at one year old, Sarah, now at only 10 years old, is dying.  She is in desperate need of a double lung transplant or she will die within weeks.  Sarah has been listed for over 18 months, as pediatric lungs are very few and far between.  The only thing standing in her way is a UNOS rule (United Network for Organ Sharing).  This rule states that while Sarah can be listed for adult lungs she may only receive them if all other adults/adolescents (over the age of 12) in the area turn them down, regardless of how sick they are.

Sarah's parents and supporters are fighting to have that rule changed.  They are not looking to take lungs from people who are sicker than Sarah, they just want to give Sarah, and other children, a fair shot at survival.  If Sarah were just 2 years older, she would, most likely, have gotten her life saving transplant by now.

Sarah's story has been taken up by many news channels, here is just one of the interviews. 
Another news story


Ways you can help: 
Sign the petition!

SHARE her story! 
Facebook, twitter, word of mouth, they all help. The more people we reach, the better the chance that we get this rule changed!

and of course,
Register to become an Organ Donor, today!


Click here to learn more about Cystic Fibrosis!

Happy 23rd Birthday Cindles

The memories we made will last forever.
Days and nights spent together.
Thick and thin we stood strong.
Through happiness and laughs, through struggles and tears.
Our friendship rose above it all.
The sound of your voice, the feel of your hugs,
your light that always shown through. 
I'd give anything to have that back, to see your face once more.
But I'll keep you always in my heart, until we meet again.

Happy 23rd Birthday my Beautiful CF Warrior. 
♥

I miss you. so so so so so so so much. 

it still hurts like it was yesterday. 

you mean the world to me  ♥

Breathe Easy angel 

My Dear Alan

My dearest Alan,


Today (5/3/12) marks 3 weeks that you're gone and I've been struggling with what to write to you.
You were/are by far one of the most amazing people I've ever been lucky enough to call a friend.
I will forever cherish that day we met (in person) May 25th, 2011. (even though Alli couldn't come =(...)
It was less than one year ago, and even though it was raining and my mom felt the need to tour an old church, we still had fun. And of course, who could forget that terrifying ride in the Ferris-wheel, it was bad enough that I'm afraid of heights, plus the rain didn't help. But it was time together and I will never forget that day.


And when I think of you
I will forever think of those skype chats we had for days at a time.
I will forever think of how loyal a friend, how devoted a husband to Alli, and how pure at heart you were.
I will think of all those times you were there for me, no matter what hour. You listened to what I had to say, never once did you judge me. I could tell you things I couldn't tell anyone else and know that it was safe.
I will forever think of the laughs we shared.
I will forever think of you when I hear a P!nk song. (especially "Perfect")

I know that my life, will never be the same.


You left a hole in my heart that will never be repaired. And while I am comforted to know you are finally at peace, it still hurts to know you're gone.


I love you more than you know and I miss you every day.


My Shiny.
My Best Friend.
My Hero.
My Alan. <3

Breathe Easy

June 24th, 1984 - April 12th, 2012

Breathing Hope for Alan -facebook page

Donate to Breathing Hope for Alan

Update on my life (cindy)

I really don't know where to start.
I was sick from Thanksgiving till New Years.
in and out of the hospital a few times.
most of you already know the details on my hospital stays so I'm not going to go into that. My last hospital stay ended early January, after being discharged I basically moved into the ICU waiting room at Columbia Presbyterian in NYC. I had to be with Cindy. I spent countless days and nights at her bedside. tearing my heart apart by the minuet. watching my best friend go through this. it was more then I can even explain.
I always imagined she'd get her lungs in time. I wasn't prepared for this. I......I will get back to this blog later.

TO BE CONTINUED...


Resuming:

I always thought she'd get her lungs. losing Cindy was never an option. never a possibility. I knew she had CF, and I knew her life would be shortened. but it was not supposed to happen now. she was supposed to get those lungs. she SHOULD have gotten those lungs. I blame the Hospital in so many ways and due to my emotions, I am going to write them all out.

: They waited FAR TOO LONG to list her, they kept giving her excuse after excuse. they waited until she was on her death bed before a doctor from St.Joe's called and told them to get their fuckin acts together.
once listed she got a few false alarm calls. One of those calls, SHOULD have been hers. The donor family consented to organ donation, but the decided they didn't want to donate the lungs. for God knows what reason. I was beyond furious. once she was in the hospital, dying, they chose to put her on ECMO, and put in a TRACH to help her breathe. Cindles began having seizures and was taking a long time to wake from sedation. so the ingenious hospital decided she was no longer fit for transplant due to minimal brain activity. Even though the girl was still squeezing my hand, and saying that she wanted the transplant.


I was not prepared for this. Seeing her that way. Being there, Holding her hand, crying with her family.
hugs. prayers. tears. whispers. love.

I spent 2hrs talking to her from 4am-6am the day we lost her. She shared some of her wishes, and planning things we would do in her honor.
holding her hand and watching her slip away. was the hardest expirence of my life.
I'll never forget her. Ever.

Breathe Easy Cinthia
8/17/89-1/12/12

Help me save my best friend!

I have a wonderful friend by the name of Alan.
Alan is 27yrs old with a wife & stepson.
Alan also has Cystic Fibrosis.
He lives in the United Kingdom and has been denied transplant there due to blood clots. Now I'm working to get him here, to the USA to have a transplant at Duke University Medical Center. Alan's lung function is currently around 20% and he often needs to use supplemental oxygen to keep him going. Every time Alan gets sick his life is put in danger. Every time he needs IV antibiotics he has to go into the hospital, putting him greater risk of infection. Please join me in this race against time & against Cystic Fibrosis. To support Alan in his mission for New Lungs!

In the event Alan is denied transplant at Duke the money that is raised will be donated to the Cystic Fibrosis Trust to help make CF stand for Cure Found!


Click Here to make a donation!

Click Here to join the group on FB

Saying goodbye & more

looks like I'm going to have to leave my job.
I'm not entirely sure how I feel about it.
I love my job, truly. I just cant really handle it anymore.
looking for a new job, something in photography, phlebotomy, or even a secretary.


I feel like something is missing from my life. I really cant figure out what it is.
I do know I'm missing my CF friends. I know that distancing myself is the best thing for me. But it still saddens me that I cant be as involved as I'd like to.


Medically have been having issues. Just not been much into discussing it.

I have to say I'm thankful for my friends who have been supporting me through this shit time in my life.

I love you all

Update

hey everyone,
yeah its been awhile,
I've been going through a lot of hard times and just not been up for anything really.
been suffering from depression really bad. did some time in a mental health program, changed some meds around. etc. I'm still seeing a psychologist & psychiatrist.
some medical issues have come up but I'm not going to go into that.

I'm just really messed up emotionally right now and I don't know where I want to be in life.

incase you havnt noticed I deactivated my facebook, the world of CF is far too overwhelming right now, and I can't handle anymore sadness/loss/sickness/grief in my life.


I love you all.

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!

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!!!

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.

Twenty-One

Well its officially my 21st birthday!

Never thought I'd make it this long. (since I wasnt supposed to live past 2)
But hey! here I am, and I'm doing great!
So thankful for everything in my life.
Would also like to take the time to remember a good friend, my first friend with Cystic Fibrosis. Kaitlyn Vece, who died 5 years ago today. on my 16th birthday.
I still think about her all the time, and I thank her for getting me involved with CF. I will love and miss her always <3 Rest In Peace Vece <3


on a not so happy note, I will be spending my 21st birthday at work, with bronchitis, and with no dog. My dog is sick, and will be going to the vet in the morning. :( feel better Skutchy. I love you.






As a premature baby, on life support.



Video for Vece

Poems.

Live. Breathe. Be
1/27/10

The chance to live.
The ability to breathe.
Free to fulfill dreams.

My wish for you,
And all I love.

To be, to grow, without a thought.

No worries or troubles in your mind.
Nothing ever need concern you.


The Angel Who is Jessica.
1/27/10

Spread your wings and fly.
Never say goodbye.
A simple kiss goodnight,
To start your peaceful flight.
Your eyes will forever shine,
As tears well in mine.
Your mission here is done,
Calm and comfort have come.

Our Angel on Earth has gone home.
Her true impact now shown.
Her halo takes its light as she forever rests.
Breathe Easy Jess.

Oh Jess

Oh Jess. I miss you so much. I haven't been able to bring myself to blog until now. You were one of the strongest fighters I ever knew. You were such an amazing inspiration. And you always will be. Your sparkling eyes and brilliant smile, even during the hardest of times will always be remembered. I'm still struggling to accept that you're gone. You were not meant to die angel. You were meant to show people with CF that willpower can over come. You were supposed to change the way people thought about life with CF. Its not fair that after all that waiting you never really got to experience your new lungs. You were wonderful Jess. All that work you did will not go unnoticed. No one knew how to stir the media into a frenzy quite like you! (with Sarah & Emily) Many people have said that your story inspired and touched people across the country, but clearly Jess, you've reached farther than that. You made such an impact on me, over here in the USA. And I'm not the only one. You truly were a celebrity in your own way Jess.

We will never stop fighting for you Jess. You may not have been able to finish what you started, but we will.

"Hold on, to what we all remembered fighting for, theres some strength left in us yet!

Hold on, to what we all remembered dying for, theres some hope left in it yet!"

-Flyleaf

Rest In Peace, and Breathe Easy.

Jessica Wales.

The girl, The warrior, The legacy

3/19/1989-1/12/2010

JOY JOY JOY!

Well first of all Merry Christmas & Happy New Year to everyone.

Now. Time for business.

So I started my job at the hospital.
Its great. Good people, good food (surprisingly), good pay & what can I say, there may be somethings I don't like. But over all...I love my new job!!

Now I want to send a big CONGRATULATIONS!!!! To Jessica Wales (click to see her updates) Who FINALLY got her shiny new lungs on Monday! I'm so very proud of her. I'd also like to mention how thankful I am to her donor and donor's family.

I've also been doing lots of work on the CF front. (as always) Fan Page, Group & of course Merchandise! Also I've registered for the 2010 walk-a-thon, so if you'd like do donate, you can do that Here!

My lung function is the highest its been in over 2 years, I'd like to thank my new job for that (aka, all the exercise I get now) and I've also gained weight! YAY. I'd like to thank my new job for that too, because I eat more since I'm on my feet and moving more.

Okay, Thats enough for now!

Miley Cyrus's CF Tattoo

Everyone knows I'm not the girl's biggest fan, but my thoughts on this are as followed:
'Gee, maybe shes not such a horrible person after all'
'The girl's done something right'

Now, What I would like to see happen is this:
Its great that she went and got a tattoo, but wouldnt it mean more to her friend/fan if she raised some money for CF, or spoke out about it.

So now, the new goal is to form a group/fan page on facebook, then contact miley and see how many members/fans it would take for her to do somthing for CF.

If she did a charity concert, that would be thousands of dollars raised.
If she attended a CF walk-a-thon, that would be thousands on thousands more people who showed up at that walk.

Miley has a chance to do something unbelievably great here. I just hope she knows that. And that she is willing to give it her all.

My CF walk team: Bush's Team Breathe
My CF awareness page: Cystic Fibrosis!, get off your ass and do something about it!

Also, The tattoo & article

In that mood again

I've been in one of my moods lately. You all know what mood I'm talking about. Heck, Most of you probably have the very same mood. Of course this mood I'm referring to is the one where you absolutely, 100%, despise with all your heart, this little thing called Cystic Fibrosis! It seems like its calling out all its tactics to try to mess with those who suffer from it! It seems to be trying its hardest to run everyone down. Its being especially cruel to Jessical Wales & Joanne Christie Dowling! And it needs to stop! Enough is enough CF! Its time for you to sit down and shut up!



Jessica Wales

Joanne Christie Dowling