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. I for one have never written that horribly in my life
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!
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.
My friend Addie, who also has Cystic Fibrosis and had a transplant, has been working with her local Donate Life chapter, to promote organ donation. Which is obviously super important to A LOT of people. DUH, I mean just look at us! We are alive because our organ donors gave us their lungs when we were in need, they gave us their lungs for us to breathe, and now we have a entire second chance to live our lives! So Addie is giving back!
She is doing a fundraiser for the Donate Life NorthWests' Lifesavers Breakfast. I will add a blurb from her page but for the rest, more info, AND TO SUPPORT HER, please click the Link Below.
From Addie's fundraising page - "….Each year DONATE LIFE holds a breakfast called "LIFESAVER'S BREAKFAST" it is one of the most inspiring & moving fundraisers i have ever attended. I was fortunate enough to attend one year before transplant, then also last year just barely after my transplant!! The emotions & amazing stories i heard, i will never forget. It's educational to teach you about Organ/Tissue/Eye donation & how important it is... How many lives YOU or someone you love could possibly save. Or, what if you need a life saving surgery one day.. who knows who will help save YOUR life…."
Now go to her site to read the rest! She says it better than me. PS: Watch the video below (or on Addie's page) because it will be the beginning of the changing of your life, as well as, part of the reason Addie is doing what she is doing. Thanks for reading! She has lived through CF, she has seen and lived through what it can do, she has lost close friends. Help her out, for a BEYOND great cause, because she is giving back thankfully since she was given her lifesaving gift. Now show some support!! Click here for Addie's fundraising page at FirstGiving
Yay!!! The Trek Tri-Island photos are finally here!! The professional photogs did an amazing job of capturing the event! I tried to pick out the ones that go with my team, and a few others I liked, but you can CLICH HERE to see the rest of the group and some amazing photography and scenery as well!
Thanks to The Joy Guild. For taking and letting us have personal use of the photos AND being out there supporting the ride!
Wow, so was I ever busy. Doing this, that and a bike trek as well. That's why I haven't even had time to post anything about my backpacking adventure! I was able, and fortunate enough to go backpacking in the North Cascades with some awesome people. We started near Mazama, WA (near Winthrop) and only a couple weeks ago (see I'm not that late). Hiking with a pack at almost 7,000 feet and walking to an outlook of 7,488 feet the next day, which is completely incredible since I COULD BREATHE. Yup I can breathe completely fine at 7,000 feet and some change, CRAZY! I actually would not have guessed that since I couldn't even breathe at sea level before my transplant.
The trail we took was part of the Pacific Crest Trail that from where we were starting, you could actually hike all the way to Canada. (And as much as I wanted to hike to Canada, it was 35 miles away…haha) So I packed up as little stuff as I could, including my medications, some snacks, tent, sleeping bag, warm clothes, sunscreen, bug spray, etc. and we were off! A bit late of a start but we made it to the trailhead eventually. Luckily the weather was perfect, we were hiking at almost ideal times (unintentionally) where is wasn't too hot and we pitched the tents before it was completely freezing. It does get cold pretty fast up there, or so it seems since it was just 80 or 90 when you left the car.
The extra cool part, besides the part where I slept on a baby tree and a boulder at an incline, was that our tents were set up at the top of a mountain where we could see both sides, now that was crazy. But I have just recently started realizing I might have a developing fear of heights, as we traversed across the sides of mountains on a trail that looked like it changed daily from falling rocks, I wasn't sure when I might loose my footing and I became incrisingly wobbly near edges and narrow paths.
Overall the trip was pretty awesome and more than that, definitely not something I thought I would get to experience this summer thats for sure, or actually even be able to do ever. So heres a link to the hiking gallery on my SmugMug, only photos of this trip! Something I could probably do more often!
Ironman Canada Penticton, BC - August 28th 2011
Well she DID IT!!My Momma ran through that finish line. Ironman Canada, now on her CONQUERED list So therefore my Momma is an IRONMAN!!! (Which we knew already but now its a little different)
3:45 a.m. wake up and to the transition and start line it was. Swimming ready in their suits and caps stood the Ironmen and women at the start of mosts greatest race that could possibly take them up to 17 hours to complete. Helicopters buzzed from above while the swimmers took off from the start line which was made of a bunch of miniature ironman canada flags hanging above the lake.
All this happening and getting ready to swim AND EVEN MY MOM WAS EXCITED TO SWIM, OVER 2 MILES! Which is usually never case since she HATES swimming. But IRONMAN WAS HERE!
I was privileged to be at almost 10 different places to see my mom swim, bike and run. Every time she looked awesome and almost as she had just done her sunday morning bike ride, or sunday morning run with her friends. Later in the day it wasn't morning anymore and the sun began to go down and amazingly SHE STILL LOOKED THE SAME, AMAZING! (freak) lol. Although we all know that I am just jealous that she is an Ironman and I'm not But I'm super glad I got to be able to be there to support her!
It happened again just like in the half Ironman, she was super happy the entire time, more happy than ever. I had made some rolled up papers writing things to encourage her along the way with a few photos and things, I also had my brother and grandma sign them, most things to make her laugh but others made her cry (unintentionally) so it was pretty funny to see her ride past once on the bike with that rolled up poster in her water bottle holder because she didn't want it to be thrown away. (I knew they were to be throw away so I tried purposely not to make them too awesome)
My Mom pedaled up one of the largest of the passes, a bunch of hills in a line some said over 5 miles in length. They pedaled on up with ease making it look easy and getting those hills out of the way before they switched gears onto the run.
It wasn't until later I found out she was running with the second poster one, in her hand just like a baton! Hahahaha. WHO DOES THAT?! (I guess my momma just loves me) but seriously, its an IRONMAN, you don't stop to carry posters for who knows how long. But she's just cool like that I guess! When she ran into Gina's family spectating she handed it off so she could continue on her last 3rd of her journey to be an Ironman.
I was able to see her one last time running past where there was less than 5 miles left, running strong, her and her good friend Gina were kicking some butt and getting that race done! It was just about dark by then but they made it before they were given glowsticks, and I was also able to watch them RUN THROUGH THE FINISH RIBBON from right against the fence
THATS MY MOMMMMMMAAAAAA!!!!!!!!!! Uh huh!
For those of you who would like to know all the split times and things like that. I have posted what I know below.Check THIS OUT! And I just must brag that she passed 629 people on the run…
|TOTAL SWIM||2.4 mi. (1:36:58)||2:33/100m||2527||99|
|BIKE SPLIT 1: 42.5 mi||42.5 mi (2:31:15)||16.86 mi/h|
|BIKE SPLIT 2: 112 mi||69.5 mi (4:58:39)||13.96 mi/h|
|TOTAL BIKE||112 mi (7:29:54)||14.94 mi/h||2441||88|
|RUN SPLIT 1: 13.1 mi||13.1 mi (2:21:00)||10:45/mi|
|RUN SPLIT 2: 26.2 mi||13.1 mi (2:20:03)||10:41/mi|
|TOTAL RUN||26.2 mi (4:41:03)||10:43/mi||1812||62|
Now that you see SHE DID IT! You can go look at the rest of the photos I took of her the ironman and her friends as well!! They are at my Smugmug site. http://ninaphoto.smugmug.com/ but you can click here to go directly to the Ironman Canada album.
GO LORA GO! CHEER CHEER CHEER!!!
Heres to hoping that everyone will cheer for my Momma today as she participates in her very first Ironman!!! Ironman Canada which is held in Penticton, BC. It will be consisting of a 2.4-mile (3.86 km) swim, a 112-mile (180.25 km) bike and a marathon (26.2 miles, 42.195 km) run, raced in that order and without a break. WHICH IS OVER 140 MILES TO TRAVEL BY PERSON(+bike for some)! She has been training for a looooong time and it's finally here so send an encouraging thought her way (or my way and I will pass it on ) so she can finish this potentially 17 hour race as strong as I know she will!! (PS: please hope it will not take her 17 hours, I will need sleep by that time lol) I will post again when I return of the news of my soon to be iron-mother! Thanks for the cheers!
"Only those who risk going too far can possibly find out how far one can go." T.S. Eliot
YAY!!! I finally got one of Jamie's bracelets!!!
They are super cool parachord bracelets in almost any color combo, I chose the Donate Life colors! Think up some cool color combo that means something to you or even a sports team and check her site then buy it!!
Last but not least!!! Photos of ME, modeling my new bracelet, which is reversible, AND DONATE LIFE COLORS!!! Can't get any better than that! Thanks Jamie!!
I recently finished the book "The Power of Two" by Isabel Stenzel Byrnes and Anabel Stenzel. It's a book about a couple of more than amazing twins who both have Cystic Fibrosis and have had miraculous lung transplants that saved their lives. The story is unlike any other I have read or heard about in regard to a double battle of CF and lung transplantation. Other than the fact they are twins, they are not of the usual caucasian background where CF is most common, they lived in a time when they were able to physically meet many other CF people which is rarely allowed today, getting a perspective many of us with CF will never even know of. They tell about their entire life, raw and beautifully sharing stories about their family, personal life, hospital stays, as well as the loss they had to face watching so many friends with Cystic Fibrosis live and pass throughout their years.
For me the book was not only very powerful and informational, mostly about the effect of this disease on people and families as a whole, but more importantly the amount of the story I could personally relate to which made it much more interesting to read and extremely personal. Throughout the book I could be sad, excited, happy, and more than grateful all at the same time of the news and information shared. The twins share many deep thoughts and feelings about life with the disease as well as insight. They share how you can turn a not so perfect situation into a totally awesome story of survival. Many time I read things that made me realize that many, many people needed to read this book, it would give others an understanding of this disease that most have no idea exists. Also the entire read, I knew that my family and friends would love the book, after sharing my life with me during many of the same times Isa and Ana experienced.
I recommend you grab a copy of this if you have ever known anyone with CF or would like to know more about Cystic Fibrosis, the blessing of organ donation, and how Lung Transplants are eventually needed to save the lives of those with end stage CF. You will NOT be disappointed! I know my review-ish paragraphs above on this book do it absolutely NO JUSTICE, so see for yourself! Read this book!
The Power of Two
A Twin Triumph over Cystic Fibrosis
Isabel Stenzel Byrnes and Anabel Stenzel
So I have been very excited to be working towards going on this bike ride that just so happens to be on my lungiversary, exactly 1 year since my life was changed, saved, prolonged, whatever you want to call it, I WAS GIVEN THE GIFT OF LIFE, because of doctors, nurses, my support crew, and of course my one and only donor who was selfless enough to share their organs, so that others could live in the event of a tragedy, as well as their family for acknowledging those wishes. That is who made it happen, and because of them, I have had one of the best years of my life. Not only because I am ALIVE, but because I am healthy and I am living it!
Please consider donating to my team as we need $750 each to participate in this. Oddly enough all the money goes to the American Lung Association. It was pretty random that I looked for an event to participate in on my year mark of having my new lungs, finding a bike ride to wear my new team transplant jersey, AND having the money go to the AMERICAN LUNG ASSOCIATION. So there you have it! I need $750 times 3 HELP ME OUT!! This is going to ROCK!
I DID IT!!! Completed one of my longtime goals of participating in the Tour de Whatcom. The Tour de Whatcom is a bike ride that travels around Whatcom County in either a distance of 25, 50, or 105 miles. My parents and their friends had done it year after year while I awaited the day I could participate also.
This year, as most of you know, I received the gift of a new set of breathers, almost completely bacteria and infection free new lungs. Because of this I have been riding my new road bike as much as I am able. I am still not good at it, nor strong, nor stable, nor confident in any sense especially clip-in pedals! BUT this year I WAS signing up for the tour de Whatcom no matter what. I was singing up for THE 50!!!
Well I wasn't really what you call "ready" for it, but my Dad and I signed up for the ride less than 2 weeks before and I had no idea what to do to prepare for a 50 mile ride in 2 weeks. Needless to say I rode one 30 mile ride by myself in town with A LOT, I mean a lot of stops, for food, visiting friends and such, and then my Dad installed my clip-on pedals a few days later, about 5 days before the ride. Best idea for preparation??? You decide! Lol.
I tried to practice the clip-ins on 2 occasions, but I didn't care because I knew they would help me out, and I was expecting to fall so all was well. I did a short ride 2 days before with the clip-ins and felt alright so it was a go!
First we rode through town, Fairhaven and Bellingham, and then into farmland in Ferndale (which is where I live) and then out onto the waterfront in Birchbay where the turnaround was. There was a hill somewhat in the exact middle between the turnaround that was like DEATH for a biker like me (unless you are a beast as I saw many of them ride up and away like nothing it was horrid) I was having a rough time but unlike I had planned I did not have to walk the hill! (only a mere few second stop at a mid way driveway to let my legs cool down, which in the same place a giant black cow just stared at me like an alien while chewing his grass like cows do. Lungs? Not an issue, EVER! How rad is that?! And seriously how could you NOT be an organ donor???
Then, my only near death experience, happened to be on that same hill coming BACK, because I am incredibly terrified riding that bike down steep hills. After that, and about 15 miles to go, and the strong winds draining on me which felt almost like pedaling into a wall, while also being swayed side to side, I started to get pretty tired feeling and just sore overall, but we were so close and I was pumped I picked up the pace at the wee end until we FINISHED! And at that point i finished not only one but two goals that I had forever wanted to accomplish, (1) ride in the tour de whatcom and (2) ride 50 miles. Done and DONE! All thanks to my donor and their selfless family acknowledging their wishes to share life with others in the face of themselves parting with this world.
NINAS TOUR DE WHATCOM RECAP: Besides my water bottle somehow falling off my bike in the middle of the road, almost dieing coming down what was pretty much a hill on the side of a mountain, loosing 1 of my gloves, and a strong wind for most the ride back, I HAD A BLAST! Most of all I FINISHED IT and I didn't even take a nap all day afterwards!!!
Much love to my donor & their family - Save a life! Be an organ & tissue donor!
So I got to spend the weekend in Tacoma, LOVE my aunt and cousins, got the stay with them, always miss them a lot. Went to my friend Austin's graduation party (they are all growing up so fast *tear*) and then had yet another check-up with my transplant doctor. Before going to the doctor my mom, aunt and I went on a walk that I had done some time before my transplant, where I had barely made it back to her car because I could barely breathe. The walk is a loop around 3 miles or so with a very large hill at the end, the rest isn't that flat either. We even have a photo of us in the dark because it took me so long it was dark out! (and we weren't even done yet)
Well I made it this time with ease and also ran up the big hills for fun (and to see if I could) anyway the new lungs conquered that walk! So the next morning I go to my checkup, my mom and I had our bikes because I was hoping to get to ride in Seattle. My Blood work (besides a sort of high white count), X-ray and CT Scan looked good. My lung function test was a bit down, 57%, but I guess not enough for them to worry, and definitely not enough to keep me down. Sounds like I won't have another checkup for 2 months which is a NEW RECORD!!! There is a test they want to do coming up where they will put a tube down my nose, throat and to my stomach to watch my acid pH to make sure my stomach acid is not hurting the new lungs, that will go for 24 hours but I will be able to do it as an outpatient.
Finally we got out of that hospital and on to our destination, Red Hook Brewery, where we would eat after our ride, because the brewery is placed right along the Burke Gilman Trail as I wrote about once before. Best trail ever, minus the busy crowdedness, but you get over it, and I'm pretty sure that it goes for like 1,000 miles . I knew my last ride was 20 miles so I knew I just wanted to do more. Besides the fact that I hadn't eaten barely ANYTHING, mostly because of my fasting for blood levels and waiting for Red Hook food, I did fairly well. We rode and rode, all the way to the grocery store that I had walked to so many time while in Children's Hospital for clean-outs.
Turns out all in all we went over 30 miles, which is my new record. So not only new record for a check-up scheduled, a new record for my bike distance. Most of all I was excited by the fact I was able to wear my all new bike jersey to show some support for the American Transplant Foundation and Team Transplant and of course because the back says "Celebrate Life" AND I was given the gift of new lungs, THE ONLY REASON I CAN RIDE MY BIKE RIGHT NOW, AND THE ONLY REASON I AM ALIVE.
Going to walk for Great Strides for the first time this weekend! I was invited by some awesome friends so we will have a good time for sure! Be sure to click the link below to donate money to our team and to a GREAT CAUSE! As it will help with treatment and hopefully ultimately a cure for Cystic Fibrosis so that many other children, teens, young adults, and now adults (thanks to donation money and research) won't have to go through what my brother and I, as well as many friends I've met, have gone through in their lifetime with Cystic Fibrosis!
GREAT STRIDES is the Cystic Fibrosis Foundation's largest and most successful national fundraising event. This year, I'm walking in the GREAT STRIDES walk at the 2011 Seattle - Seattle Center, Mural Amphitheatre walk on 05/22/2011. Please help me meet my fundraising goal of $500.00 by sponsoring me. Your generous gift will be used efficiently and effectively, as nearly 90 cents of every dollar of revenue raised is available for investment in vital CF programs to support research, care and education.
So I got some really good news back from the hospital towards the end of last week, which was that my bronchoscopy results and labs came back PERFECT! My rejection is gone for now and my CMV was better as well!
That said, I got to go to my best friends graduation, which would be my first real trip since my transplant! So my mom and I set off on in the car for a little over a 6 hour drive which happened to be pretty much monsoon raining the entire time. We crossed over a mountain pass and stopped for food, and then kept on for a while longer.
Soon after that I switched with my mom because it was so dark and rainy it was getting hard to see out of the car. We pulled over for gas and were considering getting a hotel and resuming the drive in the morning, the same morning that graduation was to take place at 8 am. So we drove a little further and finally did stop for a place around 11:00 pm.
We had a couple hours left so we woke up at 4:00 am hoping to make it in time. We ended up getting there and finding parking with perfect timing! We didn't get to see my friend (Carlin) as we were not a minute early and she was already seated with the other graduates but luckily her family had enough seats and they saw us walking around looking for someplace to sit so we were able to sit by them!
We watched the ceremony and I took some photos and afterwords we went to see Carlin once she got out of the stadium and this was her graduation cap!