6 Months

Yesterday was Mebsie's 6 Month Anniversary of her Double Lung Transplant! I'm so very proud of her! She has spent roughly 5 of the past 6 months in the hospital dealing with complication after complication, yet she still came out on top! I am so honored to call her my friend! It's been a long journey, and it's really just beginning, but I know she can beat anything!

2 days after transplant

2 days ago

California

Hi everyone.
I just wanted to do a short update. Please forgive any typos that may appear in this blog, I  don't usually blog from my phone.

Anyway, I'm currently in California! It's my last night.  :(
I flew out for my friend's wedding, which I was actually in!  I have known this friend for over 9 years, via the Internet. But this was the first time I met her in person! She's absolutely fabulous and I had a great time with her. I wish that I could stay longer, but unfortunately she needs to be admitted to the hospital, and I'm not feeling so well either.

Her wedding was on Halloween! It was lovely and she looked beautiful. Later that night I took her and Randy  (her husband) out to eat. We went in costume, of course.

That's really the whole blog, but I felt it was important enough that it had to be posted. Now have some pictures.

10 years, NEW LUNGS, Stress, and TONS of LOVE!

This post may be a little scattered because, well, my mind is. I've been meaning to post a blog for awhile now and tonight I felt extra inspired to do so. So, where to start.

10 years:
March 27th, 2015. My 26th birthday. 10 years since I lost my very first friend to Cystic Fibrosis. 10 years that I've been working to raise awareness and money. She is the reason I am, who I am. For my 10th year doing the GreatStrides walk for Cystic Fibrosis I raised roughly $1200!

NEW LUNGS:
Now for the big news! As many of you know, my best friend, "Mebsie" received her double lung transplant. On 5/28/15 (surgery went into the wee hours of the next day) It was exactly one week ago (minus 1hr) that she was wheeled into the OR. It has been a CRAZY emotional ride, and it's just the beginning. Mebsie has made tremendous progress, and I couldn't be more proud of her. She hasn't even had these lungs for a full week and she's already been sitting, standing and walking. She's already had 2 chest tubes removed. She's got color in her cheeks and power behind her voice. She is still very sleepy and in quite a bit of pain, she's still unable to eat, she's still feeling pretty miserable; but this time, it's not because of Cystic Fibrosis, but because she's healing. And soon, she'll be doing things she never could before. Soon, she'll be living the life she deserves. I'm honored to be her friend.
Mebsie will have a massive amount of bills that go along with this new life, if you wish to donate, Click Here! And don't forget to sign the guest book!

Stress:
In about 12hrs it will be one week since I "moved in" to the hospital to be with her. One week of sleeping (or not sleeping) on uncomfortable pull out chairs, one week of extremely overpriced ($10-20 per meal) and mostly unhealthy food, one week of not being able to properly elevate my swollen feet, one week of stress, anxiety and crazy nerves, one week of a single small shower shared by ALL caregivers, and one week of unrelenting back pain. Now don't get me wrong, I wouldn't change it for the world. I'd do it all over again in a heartbeat. My desire to be here for my best friend trumps all these minor inconveniences.

Tons of Love:
Due to the everything listed in the "stress" section, I did finally have a slight breakdown yesterday, and reached out to my friends (and a caregivers support group) for support. But in the hours following I was met with an unexpected outpouring of love that literally brought me to tears. I had friends send me money, to help me pay for food. I have a friend bringing me some extra clothes tomorrow. I had a perfect stranger, bring me Dunkin Donuts coffee and munchkins this morning. She had been following my updates on Mebsie in the transplant support group and was here visiting her husband, so she brought me breakfast. I had another friend pay for my dinner and have it delivered to the hospital. (it was delicious btw) I have 2 other friends assembling care packages. Another one bringing home cooked food. And yet another offering me a bed for a few nights. I have never in my life felt more loved and appreciated. I honestly couldn't (and still can't) comprehend it. So thank you all, from the bottom of my heart.

 CF walk day. (5/17/15)

2.5 days post op. (6/1/15)

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 

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

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

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