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May. 11th, 2008 @ 01:13 pm (no subject)
Current Mood: thankful
The CF walk is in 6 days!!

I will be taking a trip to Idaho after that. So in 7 days I'll be visiting my friend!

I went to clinic on tuesday. I am doing fabulous! My lung function is up to 76%!

My weight is 130-134 lbs..

I am so happy I am doing good at this point. So I further go to prove that you CAN survive with chronic rejection. As my doc said, she has a patient 12 and some 16 years out, with chronic rejection..

Because of what [info]cfkitty went through. I automatically thought chronic rejection was a death sentence. It's not. I wish she would have gotten better...

Even though my docs thought I wasn't going ot make it back in september.. My lung function was 32% and I was told I was chronic... I started plannig out my death once again. I started writing things down for everyone.

And in the July before that. I nearly died. So twice in the year right after my transplant, I almost died. But I am doing great now.

I have gotten so close to death too many times. I remember in the June before my transplant, my heart stopped and started, several times.. To look back on how bad I was before transplant, and to see how I am doing now, just boggles me!

I'm proud to be alive today thanks to my donor. I'm thankful. I am truley honored.

I'm nearing 1 year and seven months since transplant! Heh.. I am amazed!

Here I come two years!!!! I will do this!

Then I'll shoot for three years...

Four.. And so on.. As any as I can grab in my life loving hands.

Happy Mother's Day to all the brave mothers out there.

--------------------------------------------------------------------------------------------

Happy Mother's Day Hammy,

Without you, I know I wouldn't have made it sometimes. We may argue and create World War III sometimes. But that's ok. You were brave for taking me on when you were MY AGE, when I was born. You knew, I was going to be a challenge, yet you kept me, even when they kept asking you, if you wanted me.

Not many mom's can put up with what you do. Not many mom's let their children have the freedom to do everything they dream of or desire, yet try to make them understand morals and responsibility at the same time.

You let me live, you let me blossom. You let me express myself, through every odd stage I went though. And the little pain in your butt I am today.

I'll always be your baby, despite being 5'6'' and 130 lbs now.

I may have a mouth. I may be witty. I may be snobby sometimes..

But I always love you. Thanks for kicking me in the rear at times. Thank you for letting me stay in school, even though it put you through hell. Thank you, for letting me experience everything I possibly could. And treating me as an equal at the same time.

I am glad you grounded me, like all the other children. I'm glad you expected good grades out of me. I am blessed you made me go to school, even if I felt like crap. You knew, damn well, when I couldnt' go. Or you believed me when I said I couldn't do it anymore.

I'm sorry you had to go through so much trauma with me.

I hope I stay brave like you. Don't worry Mom, just because I'm moving out of the state, doesn't mean I won't be shoved up your behind on occasion. I will always be the biggest baby in the family. Even though I have my rough and tumble attitude, and I look like a freak, I'm your baby.

I'm sorry for getting so pitiful at times. I don't regret anything. I just wish I would have taken more time to thank you for everything.

I hope the fact I'm still alive helps..

And thanks for holding me up when I couldn't stand on my own two feet. And for letting me cry on your shoulder when the tears wouldn't stop falling.

I am proud to be your daughter.

I love you Mom...


♥ Kina Nicole



About this Entry
"Soldier" (c)ms_violent_k@muderiousicons, kina 2008, "CCF!" (c)Ms_violent_k@murderousicons, Purple for CF, Cure CF!! Donate Life!!, chewing on nebulizer, nebulizer Nicole (Kina)
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May. 2nd, 2008 @ 09:50 pm (no subject)
Current Mood: ecstatic
CHECK OUT THE EMAIL I GOT FROM THE CF FOUNDATION!!!!


"We have some exciting news. We are pleased to tell you that, over the past seven days, Congress and the President took action on four separate bills that champion the rights and health of people with cystic fibrosis.

The Cystic Fibrosis Foundation played a hand in each of the following developments:

* The Senate officially recognized May 2008 as National Cystic Fibrosis Awareness Month.

* Congress passed the Genetic Information Nondiscrimination Act (GINA) today. This law makes it illegal for employers and insurance companies to discriminate based on genetic information.

* President Bush signed into law the Newborn Screening Saves Lives Act, which provides resources and funding for new and existing newborn screening programs through 2012.

* The House of Representatives reauthorized the Small Business Innovation Research (SBIR) program. This program awards grants to small biotechnology companies that conduct important CF research."






AHHHH!!!

HAPPY CF AWARENESS MONTH YOU GUYS!!!!!
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"Soldier" (c)ms_violent_k@muderiousicons, kina 2008, "CCF!" (c)Ms_violent_k@murderousicons, Purple for CF, Cure CF!! Donate Life!!, chewing on nebulizer, nebulizer Nicole (Kina)
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May. 1st, 2008 @ 01:18 am (no subject)
Current Mood: determined
I am glad I have friends with CF...

But somedays I feel so alone, without Fanni and Kitty. I feel like, they fell, and I had to take over for them. I took on their fight, along with mine. I fight this illness. And I try to spit in it's face. Everyday I wake up, is another blow to this disease. Yes, it took down a lot of my comrades.. And it stole my lungs I was born with.

But it did not steal my spirit. It rises from the ashes. Always has. I hold a phoenix in this heart. My spirit burns bright. I have gone down, and risen back up. More stubborn.. Yes I have some odd emotion. Sometimes I think I cry more than I used to. But I look back. And I cry so much less....

Tears are my strength. I say it shows my weakness to people. But in all honesty. It is my strength showing. I cry, because I don't want to give up. I hurt. And I want to fight.

I am really deep in thought about all this, because of last year.. I fought so hard to survive. And nearly died a couple times. And I also got transplant the year before that.

I fight, constantly. Popping pills, and going through tests and procedures. I remain in combat, never hiding. Though I wish I could. I am always fighting, and always trying to help and guide my comrades.

We are CF soldiers.. We fight... It is usually programmed into us, the moment we take our first defective breaths when born. We fight. No other choice but to. We need to fight to live.

I fight. And, I try so hard, to keep going. I try so hard, to never forget the fallen. This illness is a faceless enemy. We shoot into the darkness, depending on our instincts to guide us. Trying to use the ultimate technology to spot this enemy. We have it spotted, now we must obliterate it. We use our weapons, but which weapon will finally take it down? We can weaken it, wound it, but many of us, die trying.

I'm still fighting.. Will I see it go down? Will I see this enemy finally be defeated? Will our technology overcome this monster?

Will a cure be found? Or will all the soldiers of CF fight, and fall? We fall, and carry eachother. We honor eachother. I shoot at this enemy, I blast it. I stab at it. I see it. I hear it. I've felt it's painful attacks. It's gotten it's grasp on my throat and I am holding a gun to it's existance... I choke, I cry, But I won't back down.

I may not defeat this illness.. I am most likely just on the front lines now. Fighting while full of adreneline..

I know it's most likely too late for me, if a cure was found, I have someone else's lungs now. But let us save the children. Let us protect the next generation, so they don't have to see this ugly war..

And feel the pain of it...
Feel the fear..
And have to join our ranks at such an early age.. We are born running. We are born with rifle in hand.

I wish my shots, and attacks would ifnally take it down...

I march.. I will march on...

I will carry on..

Rifle in hand... Tears running down my face, from fear, and courage.. I fight.

I'm on the front lines now.....

I am protecting the future.. I am protecting, myself..

I'm protecting the fallen..

I've literally sacrificed blood, sweat, and tears for this..

I've bled, my salty sweat drips to the ground as I march on.. My tears are forever falling.
I've lost a part of myself.. The fornt line is getting thin..

But I hope to shield the children...

I will march, in May.. With my other comrades.. I shall march! One day, I hope we can raise our fists in victory..
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"Soldier" (c)ms_violent_k@muderiousicons, kina 2008, "CCF!" (c)Ms_violent_k@murderousicons, Purple for CF, Cure CF!! Donate Life!!, chewing on nebulizer, nebulizer Nicole (Kina)
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Apr. 30th, 2008 @ 06:25 pm (no subject)
Current Mood: accomplished
I got this on myspace today.


"
what tests ahead of time did you have to have. How long did you wait once listed? What were your PFT's at time of tx? What are they now?

Any suggestions to make this go smoother?"

Thank you Renee!

Here's my somewhat long winded answer.


I had to do a lot of tests. I had to get a heart cath test to make sure my heart was ok. A reflux test, to make sure you swallow right and such. A walking test, they see how much oxygen you get into your system and such. A full set of PFTs. Urine analysis.. The works pretty much, to make sure you're stable and such. They also have someone talk to you, to make sure you can handle the transplant emotionally. And to make sure you have the support and such. They do a bone density scan. They do cats scans, xrays, have a dentist look at your teeth, look at your sinuses, and they also will check your liver. They pretty much find out how your body ticks. lol..

Some people even get their colons checked, depending on age. I didn't have to. But I know I have to in the next year, due to the anti rejection meds raising my risk for cancer.

They will also want a pelvic exam!

There is so much. I will look through my binder they gave me.
They will give you a binder that has all sorts of info.

About how to cope, how to prepare, possible meds you'll be on. A better diet.. And so much.

But that binder doesn't even give you a complete look, it just helps you brace for transplant.

The first year after transplant is so hard. You will have ups and downs, until they can get your body adjusted, and your meds tweaked just right.

Obviously you'r a fighter. It will be so hard, but once you get through it, and are able to do all sorts of things, that was nearly impossible to impossible. You'll be happy you did.

By the time I got transplant, my PFTs were 17%..

I got listed September 4th 2006, I got transplant October 17th, 2006. A month and 11 days!

They give transplants by blood type, your size, etc. They also go by how bad you are. You'll get bumped up on the list, the worse you get.

Try not to think about the wait everyday. Do things to keep you occupied. Take up a new hobby! I indulged in movies and sweet food. Seeing as most CF patients end up with diabetes after transplant. SO ENJOY ALL THE SWEETS YOU CAN!

You won't be able to eat red steak either. It has to be thoroughly cooked.

They recommend you avoid piercings and tattoos after transplant, so if you have a tattoo you want, get it!

You won't be able to do gardening. And there will be a limit on pets and such. I know it will be so overwhelming at first. But it all becomes second nature after awhile. Believe me. It is hard at first, you'll get anxious. But you'll get through it.

There is so much! It will be so new, and tough. But it gets easier.
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"Soldier" (c)ms_violent_k@muderiousicons, kina 2008, "CCF!" (c)Ms_violent_k@murderousicons, Purple for CF, Cure CF!! Donate Life!!, chewing on nebulizer, nebulizer Nicole (Kina)
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Apr. 27th, 2008 @ 01:04 am (no subject)
Current Mood: bouncy
Hey everyone,

I know I have not posted in awhile, and I do apologize for that. I have been so busy with everything. I have been preparing for the CF walk that is happening here in Erie. I did the fundraising for the CF foundation last month.. I raised more than hoped! My hair was cut very short. Well couple weeks ago, I trimmed it a little shorter! I like it short. I look so much better. It's odd how something you fear, turns out to be awesome!

I have been getting closer to a lot of my friends! I am able to keep up with everything too! I have been walking all over the place! I can wrestle, and rough house! It is awesome! And this ice weather is setting in, or slowly thawing us out! I hear there is going to be snow next week.. But I don't think it will last very long.

Right now I am trying to raise my part of the $500 dollar goal for our team for the CF walk. I have $100 so far! But I am also busy trying to plan things out! I have some ideas, and I am going to pull last minute things off. My sis is trying to raise money. I just hope my bro has the time.

My mom can pull things off last minute, so I am not worried. I have a positive attitude about this! And I cannot wait to see everyone at the walk! I am happy I get to walk this year! :D

I feel so grateful I am still up and around. I am able to do a lot. And so I am trying to do stuff for the CF foundation! It's the best I can do! I will just inform, and try to help in the way I can.

I'll go on tv, or write books. I will get CF a little more known. Or at least, make an impact in one person's life. Kitty had always said she wanted to make an impact. She has no idea.

Fighting To Breathe is starting the major revamping process!!! You will notice the home page looks completely different!!

1) Content will be improved, and more available!
2) Forums!
3) The email has been updated!
4) I am personally being taught how to do more updates, so the site will have better updates, other than via this blog.
5) The links list will be getting longer! WE WANT EVERYONE LOOPED IN! CF will be slapped!
6) Support or others.. (via forums, links to other cf communities etc..)
7) Art Section Improvement! Pics, poetry, maybe things you've written? Music you've made? SHARE IT HERE! LET IT BE KNOWN!
8) IF YOU ARE WAITING FOR TRANSPLANT LET US KNOW! Because if you need help raising money, or if you are looking for emotional support, please get in touch here. Let us know..
9) Life Stories..
10) More blogs than just mine....
11) Sooo much more......

I am excited. It has taken awhile to get here. It was hard to get things done last year, due to my health being up and down, up and down.. All the time. And then a few of my friends passing away within the year. I also got diagnosed with chronic rejection, had major surgery (in which they almost lost me), and then my medport removed, new one put in, and then kidney stones dealt with.. And other scares..

I got through a fungal infection..
CMV flare up..
pnemonia
cold after cold...
MY SINUSES REARED THEIR UGLY HEAD!!!! (ow...)
I fought rejection on and off.. it is chronic (but i can live on..)
I have not had rejection since february!

Here is the link to my fundraising page for the CF walk that is happening here in Erie, on May 17th!

Soldiers Against CF!"

Great Strides
Saturday May 17th, 2008
Erie, PA
Presque Isle State Park, Cookhouse Pavilon

Check In: 11:00 am Walk 12:00 pm

I really hope that the weather is nice that day. It was nice last year, but a bit chilly. Only time will tell!!

Well I am off! Everyone take good care, I wish good health and peace.

PSSST! P.S.. I have a new icon pic up! OH YES IT IS CURRENT!
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"Soldier" (c)ms_violent_k@muderiousicons, kina 2008, "CCF!" (c)Ms_violent_k@murderousicons, Purple for CF, Cure CF!! Donate Life!!, chewing on nebulizer, nebulizer Nicole (Kina)
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Apr. 4th, 2008 @ 05:09 pm (no subject)
Current Mood: content
http://s37.photobucket.com/albums/e96/spirit_of_kina/?action=view¤t=Video5.flv
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"Soldier" (c)ms_violent_k@muderiousicons, kina 2008, "CCF!" (c)Ms_violent_k@murderousicons, Purple for CF, Cure CF!! Donate Life!!, chewing on nebulizer, nebulizer Nicole (Kina)
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Apr. 3rd, 2008 @ 07:36 pm (no subject)
Current Mood: relieved
Her surgery was a success.. But her journey is FAR FAR from over....

I am praying for you Tricia.. I am praying for Gwen and Nate...

God, please guide her.. She has been amazing. One of THE most amazing women with CF...

Let her lead the troops now God. I pray....

Hoping, praying...

My strength reaches out to you...

Eva.. I have barely slept. My god...

Haha..

I let out a small sigh. But I won't until I know she is up and outside pushing her amazingly beautiful baby down a sidewalk, showing her the world...

This all reminds me of my friend Aly.. She has a daughter, Aly got transplant. She was even on Deal or No Deal..

OMG.. Nate, please give Tricia and Gwen loads of love from all of us. Just don't smother her!
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"Soldier" (c)ms_violent_k@muderiousicons, kina 2008, "CCF!" (c)Ms_violent_k@murderousicons, Purple for CF, Cure CF!! Donate Life!!, chewing on nebulizer, nebulizer Nicole (Kina)
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Apr. 3rd, 2008 @ 02:26 am (no subject)
Current Mood: hopeful
http://cfhusband.blogspot.com/

To Nate, Tricia, and Gwenyth!
http://s37.photobucket.com/albums/e96/spirit_of_kina/?action=view¤t=Video3.flv
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"Soldier" (c)ms_violent_k@muderiousicons, kina 2008, "CCF!" (c)Ms_violent_k@murderousicons, Purple for CF, Cure CF!! Donate Life!!, chewing on nebulizer, nebulizer Nicole (Kina)
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Apr. 2nd, 2008 @ 05:25 am (no subject)
Current Mood: determined
Soldiers Against CF!"

I thought deeply tonight, about a lot of things in my life...

And I am hell bent on making things better for other CF patients...

I will raise awareness.. I hope to make an impact.

I hope to help...

Life is tough, but I can be just a tough, if not more.
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"Soldier" (c)ms_violent_k@muderiousicons, kina 2008, "CCF!" (c)Ms_violent_k@murderousicons, Purple for CF, Cure CF!! Donate Life!!, chewing on nebulizer, nebulizer Nicole (Kina)
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Apr. 2nd, 2008 @ 05:11 am (no subject)
Current Mood: cheerful
Soldiers Against CF!
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"Soldier" (c)ms_violent_k@muderiousicons, kina 2008, "CCF!" (c)Ms_violent_k@murderousicons, Purple for CF, Cure CF!! Donate Life!!, chewing on nebulizer, nebulizer Nicole (Kina)
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Mar. 27th, 2008 @ 01:10 am (no subject)
Current Mood: thankful
http://s37.photobucket.com/albums/e96/spirit_of_kina/scars%20n%20such/?action=view¤t=101_1074.flv


No fear my friends!!

And look! I am still alive and kicking butt!!!

Photobucket
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"Soldier" (c)ms_violent_k@muderiousicons, kina 2008, "CCF!" (c)Ms_violent_k@murderousicons, Purple for CF, Cure CF!! Donate Life!!, chewing on nebulizer, nebulizer Nicole (Kina)
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Mar. 18th, 2008 @ 03:49 pm (no subject)
Current Mood: accomplished
A total of 700 was raised!!

Thank you everyone who helped!!

I am now up to more CF funny-bussiness!

http://www.cff.org/great_strides/NicoleBoyce5332

I have started a team for the Great Strides CF walk! I had a team last year! And now this year I am up to it again!!
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"Soldier" (c)ms_violent_k@muderiousicons, kina 2008, "CCF!" (c)Ms_violent_k@murderousicons, Purple for CF, Cure CF!! Donate Life!!, chewing on nebulizer, nebulizer Nicole (Kina)
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Mar. 12th, 2008 @ 09:13 pm (no subject)
Current Mood: bouncy


Seeing as I finally got my webcam to work again. I'll extend the donations for one week, after that no more extending time for donations. I really don't want to put this off anymore. So for anyone with pledges please send them in, or anyone who has wanted t donate, please do so in the next week! After that, no more donations will be taken in. I will be sending the donations into the CF foundation. So the deadline is on the 18th!

Thanks again to everyone who has helped and donated!
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"Soldier" (c)ms_violent_k@muderiousicons, kina 2008, "CCF!" (c)Ms_violent_k@murderousicons, Purple for CF, Cure CF!! Donate Life!!, chewing on nebulizer, nebulizer Nicole (Kina)
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Mar. 12th, 2008 @ 02:36 pm (no subject)
Current Mood: chipper
A few people have begged me to extend the donation deadline...

4 more days.. The 16th is the last day.

Please get your pledges and donations in. ^-^

The email for the donations with paypal is cutoffcysticfibrosis@yahoo.com
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"Soldier" (c)ms_violent_k@muderiousicons, kina 2008, "CCF!" (c)Ms_violent_k@murderousicons, Purple for CF, Cure CF!! Donate Life!!, chewing on nebulizer, nebulizer Nicole (Kina)
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Mar. 7th, 2008 @ 10:32 am (no subject)
Current Mood: cheerful
Donations for Cut Off Cystic Fibrosis are being accepted until March 12th! You can send donations via paypal! the email for the paypal is cutoffcysticfibrosis@yahoo.com


There is over $700! Come on we can get to $800!!!!

Every little dollar counts! This all goes to the Cystic Fibrosis foundation!!!!
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"Soldier" (c)ms_violent_k@muderiousicons, kina 2008, "CCF!" (c)Ms_violent_k@murderousicons, Purple for CF, Cure CF!! Donate Life!!, chewing on nebulizer, nebulizer Nicole (Kina)
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Feb. 29th, 2008 @ 02:56 pm (no subject)
Current Mood: thoughtful
I am fighting for those who are already fighting for themselves...

Soldiers..None are left behind.
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"Soldier" (c)ms_violent_k@muderiousicons, kina 2008, "CCF!" (c)Ms_violent_k@murderousicons, Purple for CF, Cure CF!! Donate Life!!, chewing on nebulizer, nebulizer Nicole (Kina)
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Feb. 28th, 2008 @ 09:07 am (no subject)
Current Mood: accomplished
I cut my hair!!!!!

Here is what it looks like!
Photobucket

The length cut off for locks of love is 17 inches!!! And additional length was 3-4 inches while styling!

Donations are being accepted until March 12th! Now that the official measurment is in! I will have video hopfully soon! The film crew has to "dumb it down" from HD to something that can be uploaded on youtube!

I will have photos of the haircut up later!

My hair looks a million times better!
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"Soldier" (c)ms_violent_k@muderiousicons, kina 2008, "CCF!" (c)Ms_violent_k@murderousicons, Purple for CF, Cure CF!! Donate Life!!, chewing on nebulizer, nebulizer Nicole (Kina)
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Feb. 19th, 2008 @ 02:41 pm (no subject)
Current Mood: awake
I had a calm time in the hospital.
My results are:

Kidney stones.
Sinusitis
Urinary Tract Infection
Chest cold
Edema

BUT! NO REJECTION!!!!!!!!!!!!

I have so much to do before Phil and the crew get here friday. I am so excited!

I am also cutting my hair this weekend most likely! I'll have more updates this evening most likely.
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"Soldier" (c)ms_violent_k@muderiousicons, kina 2008, "CCF!" (c)Ms_violent_k@murderousicons, Purple for CF, Cure CF!! Donate Life!!, chewing on nebulizer, nebulizer Nicole (Kina)
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Feb. 13th, 2008 @ 12:31 am (no subject)
Current Mood: awake
I am here at the hospital.
I have had a CT of my tummy.
They found out I have air bubbles in my liver ducts, but that is harmless.
My liver tests were off today.
I have a Urinary Tract Infection..
I had my bronch done today.
So I am waiting upon those results.
I SHOULD HOPFULLY BE GOING HOME TOMORROW!

But for now. Here are a few pics form my hospital stay!

( Pics! )
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"Soldier" (c)ms_violent_k@muderiousicons, kina 2008, "CCF!" (c)Ms_violent_k@murderousicons, Purple for CF, Cure CF!! Donate Life!!, chewing on nebulizer, nebulizer Nicole (Kina)
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Feb. 8th, 2008 @ 04:58 pm (no subject)
I am being admitted into the hospital...

Don't know when I'll be online again.
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"Soldier" (c)ms_violent_k@muderiousicons, kina 2008, "CCF!" (c)Ms_violent_k@murderousicons, Purple for CF, Cure CF!! Donate Life!!, chewing on nebulizer, nebulizer Nicole (Kina)
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