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

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

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

Sudden Deaths hit the hardest.

Yesterday was an incredibly hard day.
It started out normal, woke up, medicated, showered, got dressed.
Then I headed off to Wayne Day (kind of festival in my town, Wayne)
When I arrived I realized I had missed a text from a friend from work.
the text said: "Hey Kate, Just cuz I know you're good friends with her, apparently Yollie the PCT has CHF and is in the ER, they had to intubate her :("

Well I freaked, got back in my car and went home (after stopping at walgreens to get Yollie a card).

I got home, put my lunch in my bag and left. headed to work. (to see Yollie)

I arrived at about 11:30 am. I rounded the corner and saw 2 people in the hallway, one of which I could see was Yollie's brother. I stopped and spoke with them, asked if it was ok if I went in to see her. They said yes.

I went in, and literally fell over. It was just so shocking. To see someone who I had just spoken to (asking if she needed a ride to work, as I often pick her up) on a ventilator. She was 100% dependent on the vent. o2 sats still in the 70s. BP at the time was 49/27.

This is what I've gathered so far as to what happened:
She came into work that day, for day shift (7a-3p) which she never does, and thank God she did, if she hadnt, this would have all happened at home, and she lives alone, so no one would have known.
so yeah, she came in, mentioned she was feeling dizzy and short of breath, so her manager sent her to the ER. upon arrival in the ER they sent her to get a CT scan of her head (for the dizzyness) when she lie flat for the test is when everything started to snowball. once back in the ER they did blood gases and other assorted blood work.
her oxygen saturation was insanely low. they put her on the bi-pap for awhile, to no avail. then decided to intubate. :

While I was there they did a chest Xray. Both lung were completely white washed. one of the doctors said something about a 'flash pulmonary edema'.
During the time I was there she was mildly awake, making eye contact, following people with her eyes, squeezing hands, and of course biting and fighting the vent.
One of the doctors also ordered a chest tube because there was a slight pnuemothorax in the left lung. the chest tube was a preventative measure because as it was the vent was just barely sustaining her with both lungs, if one collapsed it wouldn't have been good.

anyway, I stayed with her from 11:30 until 3pm when I had to drag myself away from her and start my shift.

I was finishing up my beginning of the shift routine when I got a text from a friend who worked in the ER. simply saying "=(" I replied "its not looking good?"
2 seconds later another friend amazing friend (of both mine & yollie's), Zamy, ran into the room I was in and just said "they're doing CPR"

I looked back at the nurse I was helping at the time and she nodded. I washed my hands and left the room. Zamy & I stood in the hall for a moment, she hugged me and I cried. I didnt go back to Yollie at that point because a) I was still at work and b) they didnt want the whole hospital to know yet. then my work phone went off. I hit the 'end' button cuz I really couldnt deal with anything just yet. but then the charge nurse came around the corner and told me I had a phone call from the ER. I already knew what they were going to say.
I answered the phone already crying.
"Kate?"
"yes?"
"Yollie just passed away, if you want to come down the family said you can"

I'm honestly not sure if I even hung up the phone.
I RAN down the hall.
jumped in the elevator which thankfully didn't take long.
in the elevator I collapsed into a sobbing heap.
once downstairs I ran down the hall to the ER, crying.
the security guard tried to ask if I was okay, again, I don't know if I responded.
I ran to her room where I waited outside the curtain, I didn't want to barge in on the family.
once being invited into the room I fully lost it.

I just couldn't believe it. someone who 8hrs earlier walked into the ER joking that she just wanted to go home. was dead.
at about 5pm the supervisor came down. talked with the family. then talked with me. she decided I needed to be sent home. she called my mom, who came and got me.
Zamy came down then too, walked around with me, cried with me.

I just. I cant believe all of this. Yollie was an incredibly amazing friend. and one of the best PCTs we'll ever have. She will truly be missed by everyone.

I love you Yollie. Rest In Peace <3



left: Zamy, right: Yollie

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