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

Spine clinic, Mebsie update & a puppy!

Hello blog readers,
I suppose it's time for a little update.

First, an update on Mebsie.
Mebsie, as you know, got her double lung transplant on May 28th, 2015. As many of you know she has not had an easy recovery. She has pretty much been in the hospital since transplant. (with the exception of MAYBE 2 weeks). Her complications range from complete kidney failure to pneumonia to seizures. I stayed with her in the hospital in Philly for 3 months. May 29th - Aug 29th. Then I finally had to come home and take care of my own appointments. It's really hard being away from her, especially when she's unwell. We text everyday and talk on the phone occasionally, I also am in frequent contact with the charge nurse and a social worker at the hospital. But it's not the same as being there. I'm going down for a visit tomorrow, but unfortunately it's only a one night visit because I have a new addition to my family...he's furry, and adorable, and goes by the name of Jaxon Wilson!

This brings me to my next topic, puppy!
Jaxon is 14 weeks old. He's a mini goldendoodle and he's desperately attached to his mommy! (me) He cries when I so much as leave the room. He's very sweet and playful. And he's also my future service dog! (for PTSD, social anxiety & syncope detection)

And finally, spine clinic.

As some of you know, I have been suffering with severe back pain for about 7-8 years. I have been taking pain medications for it but never really having the underlying issues treated, or even examined for that matter. I finally decided I couldn't take it anymore and I wanted to do something more.
First I saw a pain management doctor (after waiting 2 months for an appointment) to try to get to the bottom of what was causing it, unfortunately this doctor did nothing for me. He wrote me 2 new prescriptions and sent me on my way. He didn't even fully examine me. He just handed me the papers and told me to come back in 2 months. Also, it should be noted that one of the medications he prescribed, I cannot even take! It's a muscle relaxer that should NEVER been taken in combination with my cardiac medications as it causes drastic drops in blood pressure, heart rate and of course, fainting. Cool, huh?
And before you jump to his defense, YES, he had my medication list in front of him. I didn't get much relief from the other medication he gave me either, so I decided to rethink things. My plan? Acupuncture. I did some research and found a local clinic near my house that does an array of neck, back & joint care. I contacted them and got an appointment 3 days later. My first visit was of course acupuncture. As well as a set of Xrays and a full evaluation. (for free!) Well when the results came in I was a bit shocked. I have a host of back problems. Scoliosis, complete with uneven hips. Compressed discs, pinched nerves, and I've also had whiplash, probably multiple times. So we began a 36 session program of massage, acupuncture, chiropractic adjustments, decompression & physical therapy. All of which is covered under my insurance, up to a point. For example, insurance only pays for 24 physical therapy & chiropractic sessions and the doctor was very confident that I needed the full 36, so what did he do? He waved the fees for the remaining sessions! All $3000!!
Anyway, I'm about 16 sessions into my program and have noticed some improvements. I'm really going to keep at my home stretches. I would love to be able to knock some of the meds off my list!
Okay, well, that's all for today. I'll leave you with some pictures of my spine.

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)

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 

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

tattoo

so yeah, was thinking about getting an organ donation awareness tattoo....

any design ideas would be appreciated.

originally I was going to something like this (pic below) but I'm not sure I want it in such a visible place. (because of job interviews and such)