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.
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.
Yesterday, I was blessed with one of the BEST doctors appointments in all of Nina-history. First off I get my blood drawn, then to my pulmonary function test, which was 15% higher than just 9 days ago, making my new lung function record 75%! Yeah... 75%, the highest its ever been in as long as I can remember. So I was pretty stoked to say the least. Next off to my x-ray from there, and then, doctor!
The other good things that came out of this doctor's visit, I learned the partial collapse or injury that had previously been at the bottom of my lobe is now gone. I have a higher red blood cell count so there's more oxygen transport. My oxygen level chills right at 100%, never seen that number before, and like I was telling my dad, the number wanted to go higher the machine just wouldn't let it! Another thing is I will no longer have to check my blood sugar, which is just more than awesome, no finger poking 4 times a day, YAY. Lastly I am off of the sternum precautions which also means, I CAN DRIVE AGAIN!!! And lastly the second part, more prednisone tapering to start next week. All in all... WOO HOO!!
In other news, I saw the doctor for the tummy surgery and my tummy tube has been REMOVED!!! I am almost like a completely normal human being now. The only weird things left is my port-a-cath (which I will be keeping), and my feeding tube, which my doctor said I would be able to remove in a month or so. Then I will be FREE and TUBELESS!!! At the moment I am actually using my feeding tube to cheat and gain back a bit of my weight before it gets removed. But not much and definitely not for long.
That's it for now, and yes it was a totally awesome day! Thanks for reading, and thanks for the support!
SO! I actually DID get to carve real pumpkins, thanks to my dad, even though a bit late, better late than never right? Plus all the leftover pumpkins need to be used somehow. Since we didn't have and pumpkin carving things we went old school and here's what we came up with. Nothing spectacular but YAY PUMPKINS! And I promise spectacular pumpkins next year
Nina-race Story Time!
Here are some photos of a few of the races that I did in the past! (Wishing I could continue with the running) I have actually done 3 5k's from about 40-60% Fev1 (Lung capacity) One of which I wore oxygen for part of. (This is when I say "ANYONE CAN DO IT!!") I even once got together a group to run a 5k with me! Everyone should try it since it makes you feel so accomplished! I have included the group photo of everyone who finished the run! We had a great time and I thank everyone who participated and everyone who has ever ran a race with me! I encourage everyone to look at the link below, its the running plan that's helped me, and a lot of people get off the couch and start a running routine, its easy too!! Hopefully I will be off the couch, or the computer chair, running with you all soon!!
Couch to 5k Running Plan