What's up Nina? Thoughts from a Cystic Fibrosis Survivor & Lung Transplant Recipient

5Apr/13Off

Inspirational Quotes

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Click here to check out my inspirational quotes and sayings blog!

I love finding inspirational quotes. A new blog I started on Tumblr was made for just that. Every time I see an inspirational quote I post it up there. Nothing on that blog is owned by me. If you like inspirational quotes please check it out!

http://lovelivejustbreathe.tumblr.com/

Nina

 

31Oct/12Off

Happy Halloween!

Be whatever you want to be its Halloween!! and Go eat candy, just because YOU CAN! :)

7Oct/12Off

Bellingham Bay Half Marathon

Trying to keep the blog up, I know its been a while. Would love to inspire a few people to be organ donors or some young Cystic Fibrosis fighters to never give up!

Running the bridge around Mile 11

The Start!

I did a half-marathon!! 13.1 miles! Kind of crazy since I was on the ventilator the same day only 2 years ago! I picked the Bellingham Bay Half Marathon because its close. For training I ran 5 miles once a week on trail and tried to run a couple other short runs on the treadmill or a longer run on pavement until I worked up to 10 miles.

A few months before I ended up needing another surgery to remove some stitches in my chest that were put in during my transplant and causing trouble. Which landed me on the couch for over a week, but I got back back to 6 miles in no time.

As nervous as I was I knew I would have fun because I had an awesome running buddy so I went into it feeling just... VERY NERVOUS pretty much! Haha.

We ran/walked pretty fast. I was nervous for the 4 hour cut-off but suspected I would come in around 3:30. To my surprise we finished at 2:48:40 UNDER a 13:00 minute mile! Can you say THANK YOU ORGAN DONOR!! I CAN! <3 :) I just can't believe I am able to do these crazy amazing things, but honestly sometimes I just want to cry. Its so unbelievable. Unbelievable.

Newspaper article covering the race

FINISHED!!

 

 

1Oct/12Off

Lungiversary #2

Yep! It was my second lungiversary, September 16th. The second anniversary of me receiving my beautiful new lungs. But also the second anniversary to my donor families loss. Keeping them in my thoughts always.

This year we did something a little special, and a little crazy! But it turned out awesome :)

There's this paint rock right off the I5 freeway near my house. People paint it all the time for anniversaries, birthdays, teams winning, and proposals. Naturally I thought, LETS PAINT IT!! So we did...

Yes! I wore a mask, but yes I also ran down the side freeway with a bunch of painting equipment and got picked up by our rescue vehicle, (THANK YOU AND PROPS TO THE RESCUE VEHICLE WHO WAS CALLED AND CAME AT A MOMENTS NOTICE) on the side of the freeway, in the dark, and had 9 people in a small car. We kept it under control :)

Awesome friends I have! Love them!

Here is the result:

1Apr/12Off

April is National Donate Life Month!

This is no April Fool's Joke.

Currently more than 110,000 men, women and children are awaiting organ transplants to save their lives. Thousands more are in need of tissue and cornea transplants to restore their mobility and sight. Register to be an organ, eye and tissue donor today and provide hope to those who wait.

[taken from donatelife.net]

Since it is April Fools day. Here's a couple of my favorite jokes from the internet. But don't forget to sign up to be an organ donor! In case of the unfortunate event of your passing, you will be able to give life to sometimes over 7 people. People who will die on the transplant list otherwise. People who are alive because they are fighters, and they have hope that their organ will come soon. What an honor to give such a selfless gift in a time of such tragedy, and live on through another (or many others) who will be truly grateful everyday and continuously thank you and your family for giving them life. These 100,000+ people will not make it without these organs, and only encouraging others to be an organ donor can make a difference. So ignore the myths and talk to your family today. Be a hero.

"Dont take your organs to heaven...heaven knows we need them here!" Really.. what are you going to do with them?


Some April Fools:

WestJet introduces child-free cabins

Google Street Roo - Exploring the Outback one Bounce at a time.

The YouTube Collection: The Magic of YouTube in Your Hands

30Mar/12Off

Doctors Day

"I would thank you from the bottom of my heart, but for you my heart has no bottom." 

Earlier today I read that today is National Doctors Day. That means A LOT to me. My doctors, throughout the years, have done everything they possibly could to help me fight my disease, Cystic Fibrosis. They have also done a lot to further CF research and nothing means more to me than finding a cure for CF someday. For all my friends with CF out there, and  all the families who have a loved one or know someone who has CF. Our doctors are working hard to make sure that happens.

I have been blessed, from practically birth, by having the greatest doctors I could have ever imagined. I mean it's obvious I did not imagine having Cystic Fibrosis, but having such amazing doctors who can make everything about a life threatening disease a little bit easier makes a huge difference in the lives of the individuals fighting the disease. Like me. That's what happens, a doctor is so encouraging, and working so hard on your behalf to make sure you live as long as possible, as long as you follow your prescribed regimen, what more could you ask for as a patient?

My doctors were always like my family, I always told them about all my adventures, I always took their advice and asked questions for improving my healthcare, and most of all I always trusted them. The day I moved to the adult center I lost all of those doctors, the ones I knew my whole life, the ones who kept me around longer than they had ever expected and what statistics show. I was going into completely new hands in the worse health I had ever known.

My awesome Doctors from Seattle Chidlrens Hospital

Now I have some new doctors. They saved my life, you know, life savin' somethin' somthin' no big deal, hahaha, but really, they trusted in me and gave me new lungs. They trusted me to care for them, and they have been there every step of the way. I have the most wonderful, amazing and inspiring surgeon and transplant team, who are probably the greatest at what they do of anyone on the face of this earth, which they are no doubt, and I know they are looking out for me. How much more could I ask for? I know that all they want is to keep me healthy and living it up! There is nothing better than knowing you can trust your doctors to take care of you the best they can, and give you the best advice no matter the situation. There are no words to express my gratitude for my doctors over the years, but I hope that they all know how much I appreciate them and how grateful I am to have them in my life.

So THANK YOU DOCTORS (especially mine, past and present) for helping the world live it up, despite the illness and disease thats among us.

I am not sure exactly how to go about thanking someone for saving your life.... but... maybe I will figure it out someday. :)

14Nov/11Off

Whoa brotha!

Needing an update on Josh? This one's a little crazy, but just read it.

My brother finally had a bit of an awesome-ness thing going on lately. He was given a tracheotomy, so he can use the vent through a hole in his neck instead of having that annoying tube in his mouth, because I can relate to that tube thing, IT'S NOT COOL. We are hoping that this will help, or do something, anything? K, Keep reading..

Oh hello, yes it gets better, with the trach in, his mouth is free, and his face, and his head, and his angry at the tube stuck in his face attitude, and since that all sounds like so much fun, you would have to imagine that with all that being gone, how he must feel. I mean I know how he feels, but, just think about it. The perfect comment today, happily said, was by the respiratory therapist who walked in and stated "He looks like a human being with that [vent] thing out!" lol. It helps 190% that he can wear his glasses and mostly that he currently isn't puffed up like the Michelin man. (Although being the stick figure he has always been it wasn't a bad look. ;)

So today he starts off by smiling when he sees you come in, as well as turns his head to figure out who it is entering his room. Then he proceeds to try and talk, but he makes no noise (since the vent is still in, so that doesn't change the talking thing till' the whole vent is gone) So he is trying to talk and we are trying to figure out what he is talking about, which is really hard mind you, and he has the same frustrated face as he did before all this happened, so it's definitely Josh, thats for sure. (at least I know now that he didn't get switched while moving between hospitals, or I'm just hoping that he remembers that I am the greatest sister on earth) Later, he thought he could write, and he took the pen and went to town… and there on the paper, after his "feeling accomplished" face was on, when he handed my mom the clip-board back, were a few scribbles, and maybe a circle, but it turns out he writes exactly like his sister did when she was on the ventilator, it must run in family. :P I for one have never written that horribly in my life :P

So I had a little fun with this update since he was having a good time today and was happy with the visitors he had. Also he was doing incredibly better since the trach was placed paired with the medications being tapered all combined almost turned him into, well him. Even though I sucked at being a lip reading translator I tried my best, but just so you all know, he actually looks just like Josh, so you should go visit him before he comes all the way back to his all normal Josh-like self and stuff. Because then he will be making fun of us all and being rude and stuff. Lol, just kidding.

My Mom and him are down there alone now plotting things I think, so I was trying to think of things that might make him happy, and right now I cant think of anything except for like Fuego (which we have yet to sneak into the hospital) homemade get well/rock on posters and things like that, anything that shows some love for his room. It's ICU so they have some restrictions, but I saw a room with balloons so who knows. :)

KEEP THOSE GOOD VIBES COMING

If you want to comment your phone number I will let you know more about visiting and such. (it will not show on my blog, theres also the email button on the top right side)

I may have almost lost hope, but its still hangin in there. Those prayers, thoughts, etc, they are getting it done!

11Nov/11Off

11:11 on 11/11/11

Did you make your wish?

...Or is it the beginning of the Mayan apocalypse? Either way! It's 11:11 on November 11th 2011 and I'M STILL ALIVE. (With my new lungs if you have forgotten) Obviously you are much alive as well, so WoooHoo! It's only gonna happen once more for a billion years!! (I might have made that up who knows..) Which will be tonight at 11:11 PM. So Happy Veterans day because it is that day, all the soldiers have been making sure we have a free country to live in and stuff, and don't forget to make a wish, because you just never know!

And here is my contribution to the obsession:

Directly from Nina's Desktop

31Oct/11Off

Happy Halloween!

Hope that everyone has a safe and fun Halloween!
I made up for all the candy I can't eat now in the weeks before my surgery :)

30Oct/11Off

#127 On Your Marks!

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27Oct/11Off

100 Million

I have been meaning to post this awesome story, provided by Donate Life America. On October 11th, 2011 they announced the 100 Millionth Organ, Eye and Tissue Donor Registered in the U.S.

That is so incredible because "The United States can now boast that 100 million Americans — roughly 42 percent of the adult population –are registered as organ, eye and tissue donors in state donor registries." At least I got it up before October was over! These 100 Million people all signed up to donate their organs in the random chance the sudden end of their life could save many other human beings in need. Thank you to the 100 million, because I already was given my second chance from someone just like you. Caring, sharing, and loving. Against all odds.

For the rest of the facts, and the whole story on this amazing achievement click here!

Waiting List Statistics as of October 2011:

  • 112,178 Patients Waiting
  • 61,767 Multicultural Patients
  • 1,746 Pediatric Patients
  • 28,665 Organ Transplants Performed in 2010
  • 14,510 Organ Donors in 2010
25Oct/11Off

OH MY GOSH!

28 Breaths a Minute | Your Life…
The Reader's Digest version

Click here to VOTE NOW!

http://jamiebug.com/

So I am horrible friend! I totally, and completely, forgot to tell you guys how cool Jamie is lately. (well like always) I will try and keep it short BUT, she sent a story into the Reader's Digest contest "Share Your Story" and it literally almost instantly became an editors pick. Not only that, its been hangin' on the SECOND PAGE OF THE MOST POPULAR STORIES! That's out of A TON of them! The prize for the contest is having your story published in the Reader's Digest, how cool is that!? There are even cash prizes for the top entries, but who cares, it's the readers digest! Besides that, she also got published in a newspaper article about this contest and her submission. YAY! GO JAMIE! So go vote now! And everyday after that until November 15th, its EASY! :) Below are the links so you too can check out more of her, and this contests awesome-ness!

  • News article!! - The article written about her Reader's Digest contest submission!
  • Readers Digest Facebook App - Where you can Vote for her story  everyday. Find the story below If you would like to read it! Don't  forget to vote! :)
  • http://youtu.be/J8dbN8_TkAk - Jamie's YouTube Video Associated with her amazing lung transplant and story.

"28 Breaths a Minute"

I was born in 1979 with the lung disease Cystic Fibrosis(CF). I was not expected to live past the age of eight. In 2007 CF had destroyed my lungs and I was dying. I was on 6+ liters of Oxygen and my lungs were functioning at 11%. I was denied by almost every transplant center for a double lung transplant because I cultured Cepacia. I didn't give up. We flew 2000 miles to Pittsburgh PA. where I was evaluated by the only center willing. After 5 days of testing my lungs could not continue breathing. My husband chose to put me on a ventilator while the doctors/surgeons decided whether to put me on the transplant list. I was put on the transplant list on 12/07/07. Just three days later on I received the gift of life from my donor. I will celebrate my 4 year transplant anniversary December 2011. I believe the hardest things in life are worth fighting for.

http://youtu.be/J8dbN8_TkAk - Jamie's YouTube Video Associated with her amazing lung transplant and story.

 

20Oct/11Off

By the Way

My brother is doing so much better its a freaking miracle. The doctors here were almost sure he wouldn't be able to come out of this. (we were all 101% more hopeful and than the doctors at the first horrible hospital we were in were it was more than exhausting to be shut down all day, especially for our family and friends awaiting to hear good results)

Although still on the ventilator. Josh has now been awake and able to move his legs a bit, squeeze with his hands and wiggle his toes once or twice. He was moved a few days ago from Bellingham to Seattle, to Harborview medical center. Since he has been there he has made some major progress. After confirming brain function and that there are no issues in that department they are working to transfer again, this time him to the University of Washington medical center so that he can be near the Cystic Fibrosis and lung doctors. He will be in good hands!

Prayers work! Keep em' comin'! I want to send out a HUGE THANK YOU to all of our family, friends, and everyone else who thought of us. Thank you all for the thoughs, prayers, food, coming out to the hospital to sit with us and be there for support and everyone for just supporting Josh and my family it has been unbelievable! I did not forget those texts that have been flowing into my phone sharing hope and support either, THANK YOU ALL AS WELL!

Thanks again and I will update soon!

 

<3

20Oct/11Off

October

Just because October happens to be the month I was born, it's actually my favorite month for another reason… I. LOVE. CARVING. PUMPKINS. Some year's I might have been too sick, or this or that, but I always tried to find a way to carve a pumpkin for Halloween, because I almost ALWAYS could.

Anyway, without much more rambling, here are the 2 I carved this year :) After many failed attempts at trying to carve a lame fake pumpkin. Which was apparently be carve-able - not my idea. :P But I attempted and after 15 minutes I was covered in styrofoam. After that I kept going until a piece between two pieces I removed caved in, FAIL. PS. I Allllmost had the fake pumpkin looking like I wanted it too… I am blaming it on styrofoam and the design I chose.

And finally, to clarify a few things, #1 is a paw but I know you knew that, thats a spider not a scorpion, and the little pumpkin in the bottom right window is a baby pumpkin and his first tooth. Just sayin'.

18Oct/11Off

We must do that which we think we cannot.

We gain strength, and courage, and
confidence by each experience in which
we really stop to look fear in the face…
we must do that which we think we cannot.

Eleanor Roosevelt

© Tiffany Harvey

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