This Losing Battle - poem

My heart has been yanked from my chest.
My lungs struggle to take a breath.
My vision fades, I drift away.

My mind is gone, its in a trance.
There are spoken words I cant comprehend.

The world spins fast around me.
I crumble.
Something deep inside me cracks, my soul shouting, "just let go".
I know I should, there is nothing left.

but then your voice comes through the wind.
Convincing me to try again.

I stand once more, to face the world.
And I fight this losing battle.

This fight is all I've ever known.
The war is something I call home.

but I won't give in, I won't say "quit"
not until the pieces fit.

and if they do, if that time comes,
I'll march to paradise by the sound of drums.

When my mission is complete, and my journey through,
With wings blazing, I'll watch over you.

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

Fuck You FOWA

So yeah, As many of you know I've been looking for another dog.
I want one smaller than skutch but I don't want a dog that bounces when it barks....thats a rat, not a dog.
My mom & I had somewhat decided on a Norwich Terrier, that is until my mom saw a dog up for adoption by FOWA (friends of wayne animals) in the paper. her name was Venus. She was a Spaniel/Pekingese mix. estimated about 5-6yrs old. I contacted FOWA imidately. After quite a few phone calls & emails to them I finally got a reply via email, which simply said "Venus will be at PetCo in parsippinay tomorrow from 12-2" by the time I read the email it was 11am on the day she'd be at PetCo. I jumped out of bed and told my mom who was excited to go and see Venus. I showered and we headed out the door. We got there about 12:23. walked up to the FOWA table and waited. and waited. and waited. and waited. The people running it clearly cared more about their conversation then talking to prospective families for their animals.
after about 10mins a woman comes over to us and says "can I help you?" to which my mom politely replies "we were wondering if Venus was here?" the woman says "dog or cat?" I jumped in, "she's a dog, I was told she'd be here" the woman, already moving on to something else says "I only do cats."

Frustrated we walked away, we didn't leave though as we were very anxious to meet Venus. A few mins later I saw a teenage looking girl in a FOWA shirt, I walked up to her and asked her about Venus, she, was very helpful and very friendly. I was glad to finally have someone helping us. She called the foster mother of Venus (who happens to be the VP of FOWA) I'm informed that they're on their way.

About 1:40ish my mom decided she was gonna go walk Skutchy around outside, as she is walking out the door guess who she walks into. Venus & handler. Right away we started talking. She instantly handed me Venus. I fell inlove. We all chatted for over an hour, during which time I filled out the adoption application. Everything had gone great. They needed to talk to Skutchy's vet to make sure we were good dog owners then they would set up a home visit.

The next day she called me asking if they could come by that night with Venus for the home visit, and since my mom was out of state I had to ask them to hold off until wednesday. What I'm assuming happened is that between that Monday morning and Wednesday evening when they were set to come for the visit, is that they had done the home visit with the other family and pretty much decided on them.

Anyway, wednesday came, Venus came for her visit. I loved every minuet of it. She had stolen my heart.
I was aware that they had other applications. but the last thing they had said before leaving was "we'll talk to you on saturday" (which is the annual FOWA dog walk)

Less than 24hrs later they called me, and said "we have decided to let Venus go to another home, we really want your dad to be on board with this. You and your mother seem great and you're obviously good dog owners, so once your father is on board give me a call and we'll set you up with a dog"
In my head I'm thinking "I don't want a DOG, I want VENUS!" but all I could do was say "ok" and cry.
The second I hung up I called my dad, who was VERY angry. He told me to call them back and see what I could do to change their minds. I called, but I started crying halfway through the voicemail I was leaving and hung up. I then gave the phone number to my dad who called himself, saying "How did you know I wasn't on board? you NEVER asked me if I was on board! all you asked is if I was surprised, which I was. But what does me being on board with it matter? Its my daughter's dog, not mine!" They returned his phone call. And guess what, They ALREADY gave Venus away!!! How absurd is that?! I'm almost positive they had already given her away before they called me. My dad was obviously furious. He demanded to know why they even bothered to come the night before, and if it was just to look for an excuse to give me as to why we werent getting her. The woman then changed her story and blamed Skutchy! She said that Skutch growled at venus. (did I mention that she has another dog also and said herself that it growled at Venus occationally over a bone) well when Skutch growled, ONCE, it was past 7pm, Skutch had not been fed, and Venus was drinking out of his bowl. so Yeah! he was a little confused. but did he attack her? NO! did he even get up from his spot on the couch? NO!

I'm beyond upset. I cant believe this all happened. None of it is fair.
I've also been informed of an even more absurd story involving FOWA that happened to a friend.
I'm now looking to North Shore Animal League. and I really hope no one else gets hurt by these people at FOWA.






Venus <3




Penelope, the dog we're now looking at.

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.

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

Touring the UK *unfinished*

Leaving:
left the house at about 6:30pm. flight was at 9pm.
slept on the plane for about 3hrs. arrived in London at ohhhh 8am UK time.
hopped right on the train up to Manchester.

Manchester:
once in Manchester we walked to our hotel and got settled in. (washed up, changed & called Rachy's mum to come fetch me)
and then... DRUM ROLL!!!! the moment I'd been waiting 4 yrs for! I got to meet Rachy!!!! I also got to meet Rachy's mum Lynnette and the lovely Holly







Holly only stayed for a few mins after I arrived. shortly after Holly left my mom & rachy's mum wandered off to do some chatting. leaving Rachy and I to bask in the joy of finally meeting each other!!
It was so amazing to finally meet her! I adore her to bits and pieces! after awhile our mums returned and then I joined them for dinner. once we'd been gone for about 30mins Lynnette got a text from Rach saying "I'm done eating, bring my duck back!"
so up we went, back to miss Rachael! My mom and I stayed awhile longer. We left much sooner than I'd wanted to but we needed to let Rachy get some rest as she looked completely exhausted. (as did we)


The next day mom & I got up early and went for breakfast & coffee (or hot chocolate in my case) at an adorable coffee shop! we also walked around the city, there wasnt much to do yet since nothing opened until 10am. lol.







at about noon we headed over to the train station to meet another amazing friend, Alan!
He joined us in our exploring. we toured an old church from the 1400s. then went on the ferris wheel in the rain. which was cool. but also sucked. cuz I'm terrified of heights. and the rain didnt help! lol we then went for lunch, and then caught trains to our next destinations. (Alan went home, we headed for Scotland!)

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

you're handicap?

So yeah, this is kinda an addition to the previous post about Daniella's graduation.

Anyway, upon arrival at the school we followed the flow of traffic into the parking areas. One of the security/cops saw my handicap tag and directed me to the handicap parking. Unfortunately there was another security/cop dude there who was not quite as intelligent. He decided to stand in front of my car so I couldnt go in the direction of the handicap parking lot. The first one tried to correct him by pointing out that I had a handicap tag. The second guy responded by rather rudely saying "You dont look handicapped" I simply replied by saying "I have a heart condition" and driving away, he then yelled "Oh come on!" I didnt reply, as I was driving away. but seriously asshole.

to this moron:
its not up to you to decide what handicapped looks like. grow up you over inflated ego asshat!


P.S. someone should get me this

Feelings and Future

So my best friend Daniella, graduated college today.
which is more amazing than I can ever say!
Had a lot of fun at the ceremony with our other friend and her family.
I cried. but thats not surprising. we all know how emotional I am.

though it also got me thinking about my future. Daniella and I graduated high school together. so theoretically I should be graduating soon too. but I'm not.
granted I had a few health problems that held me back a few semesters. but still, I feel slightly like a failure. I know thats silly of me, but I wish I had the ability to just stop being so....A.D.H.D and more able to focus. *sigh*

anyway Congrats to my most amazing friend DNAcat!

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)

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!

Hospitalization

Hey all,
as many of you know, I've been in the hospital since Tuesday.
Past few weeks I've been feeling worse and worse. finally after a bit of nagging from my friends, mom & boyfriend I decided to go to the ER. didnt plan on getting admitted. but I did. not long. 3 days. it wasnt bad (except the food was horrible).
the room was amazing. the nurses, techs & phlebotomists were good.
I did flip shit on one doctor (new guy) who was completely arrogant, and WRONG! lol.
he kept avoiding my questions and then tried to explain something about a pacemaker to me. and he was dead wrong. which made me mad. so yeah, I yelled. and stormed out of the room. I didnt see him after that lol. a different doctor came in the next day, he was great, answered all my questions. gave me the names & numbers of a bunch of new peds cardiologists. and a new pulmonologist. also gave me some new meds and put me on nebs Q4hrs for the first few days, then Q8. then once daily. then as needed.

so yeah, initially they thought it was congestive heart failure. which thankfully it was not. I do however have bronchitis, and fluid around my lungs.

which means antibiotics, nebs, & water pills! OH JOY!

anyway my BF rocks for taking me to the ER, staying with me for hours, picking me up, and babysitting my car. (on top of the fact that he just rocks in general!)

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!!!

Cardiac Update

Just got home from having my pacemaker checked.
They say my battery has another year on it, but then again, last time they told me that, I was on the table 2wks later!
they Also saw an increase in arrhythmias, I've had 13 since the 28th of feb.
and although they dont last long (usually about 2mins), they're actually affecting me. I'm always tired lately.
my pacemaker has been switching modes more often too.
(10 times, in the past 3 days) this happens when my heart rate goes up to 155+
(which it should never do) so yeah, they had me in the chair for over an hour,
called in the doctor who was there. who proceeded to call my doctor.
and suggested a holter monitor. yet again. I also may be switching hospitals!
which is exciting. *claps* anyway. thats about it

Lungers Playdate

So yes!
the long overdue blog post about the exciting day I had on the 19th of Feb.
LUNGERS PLAYDATE!

A bunch of Lungers collected at my house, we mingled, and talked, and other exciting things. lol.

then we went to visit Cindles in the hospital! armed with balloons and gifts!

then we went to TGIF and that was awesome. we're obnoxious! LOL our waiter was fun!
Laura & I danced with an old dude. Dylan made a mess. Mebsie wobbled around lol.
and Daniella jumped on my back and surprised me!

after dinner & a few drinks we went back to my house. Patti unfortunately had to leave then.

Dylan & Laura stayed a bit longer :)

and of course mebsie stayed for a few days!!

overall, it was fun!

now for a few pix,

(theres lots on facebook)