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)

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!

A Heavy Heart

As many of you know I lost an amazing friend last night.
a friend who has touched the hearts and changed the lives of literally thousands of people. The person I'm talking about is of course, the beautiful and courageous Rachael Wakefield

Rachael's fight was a long one. She has been ill since she was 13. and has been on oxygen since then. She fought hard with her lungs never letting them defeat her. on March 11th, 2010 Rachael finally received her double lung transplant, the gift she'd so desperately needed. It was a difficult recovery, but as with everything, Rachy overcame and was 'healthy' at last. Unfortunately, it didn't last. One side of Rachael's diaphragm became paralyzed due to her being on the ventilator for so long after surgery, this paired with the immunosurpressants made her very susceptible to respiratory infections, and pneumonia. In addition to this, Rachy also developed Primary Pulmonary Hypertension.


Rachy fought so very hard throughout her 23 years of life. Her smile and spirit were contagious. My prayer had been that as her time came she would float to Heaven peacefully as the angel she already was. And she did. And I am thankful that she is no longer struggling to breathe, or fighting off pain. I'm comforted knowing that she is at peace. But I will never stop missing her. She was a true gift to this world. Her bravery will not be soon forgotten. Her spirit and her legacy will live on. I was so honored to call her a friend and proud to have met her. The sky shines brighter now as the heavens have gained a most brilliant star.

Breathe Easy, Fly Free, Rest Peacefully.
Rachael L Wakefield


Live Life then Give Life.
Be an Organ Donor.


Links:
Rachael's Legacy
News Tribute to Rachy












http://www.youtube.com/watch?v=gbQfBupI2Cg

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

Brilliant Bree

Bree Cordick.
One of the most amazing people I could ever hope to call my friend.







Bree suffered from Bronchiectasis. She received the gift of life, a double lung transplant on 7/8/09.
She was recently struck with a viral neurological infection. which claimed her sight then her life. a few days ago she was taken off life support. Bree we're all praying for you. If this is goodbye then have a safe journey to heaven. Love you <3

Bree you are an insiration, a hero & an angel. Most of all you're a great friend! I'll miss our "boohooyou" chats. (lol) you were always there when I needed to talk. I'll never really get used to you not being online all the time. and I cant believe this is the way you're going out. you should have years more. you should be able to accomplish everything you desired. I know you used those lungs well and made your donor proud. but I wish you had more time. Even though we never met you were one of the realest friends I had (I dont think that is a proper sentence but you'll forgive me) I love you so much Bree Cordick. you kick ass doll face!
all my love to you and your friends and family!
♥ Ducky

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!!!