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
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!
Help me out here! My brother and family need every good thought and prayer from everyone who reads this. There is still a good chance he will wake up.
& things). January 5th he will be 21 years old! He has been in that "rough patch" of CF for some time now and has started needed oxygen to help him breathe. As well as getting closer to trying to get on the lung transplant list.
He recently went into the hospital for a clean-out (normal I.V. antibiotic treatment) and it took a turn for the worse. He aspirated and went into cardiac arrest leaving him on life support until something happens otherwise.
Although there was hope given to the crowd of family and friends gathered in the ICU last night, his situation is still on the rough side. Besides waiting for more testing, and results, we are asking for any prayers, good thoughts, and love you can send his way, and also our way, his family, and friends while we wait for news.
Thanks and lots of love.
To my bro: hang in there we are all pulling for ya, theres a world of people out there who love you more than you know. <3
For those of you who didn't get the chance to meet my brother personally I grabbed a few quick pics I could find so you'll know who the prayers are for
As most of you know I, and my teammates, must raise $750 each to go on my 1 year lung transplant anniversary bike ride. It's a 3 day ride in the San Juan Islands conquering a different Island each day. Oddly enough all of the proceeds and donations go straight to the American Lung Association to batter lung disease and fight for cleaner air for all. The team will be sporting American Transplant foundation jerseys to show some support for my donor and their family as well as support organ transplantation and donation. I REALLY WANT TO DO THIS! If we do not come up with the $750 each it will either have to be paid by us or we will not be able to ride. (I really do not have that kind of money You can click here to see my fundraising page)
Thanks to an awesome reporter there was an article in the Ferndale Record Jounral written about the ride and my Cystic Fibrosis/Lung Transplant life. I must raise enough money to do this ride!! Thank you for reading and considering donations, every $1 will help!
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
I was asked to join by some friends of mine to do the Great Strides walk for Cystic Fibrosis, Washington chapter. The walk was in Seattle so I drove down there to show some support! I also thought it was cool since I'd never participated In the walk before.
While waiting for the festivities to begin I saw the team from the CF clinic that took care of me, kept me alive for 21 years of my life, and whom I hadn't seen since I turned 21. I've missed them a ton and was super excited to be able to say hi! Pictured below is me with my doctors!
As far as the walk went I was surprised how unorganized it was. Just the walk portion, the check-in and finish line seemed very lively and orderly. It was just the route and stop lights (which I know they had no control over) that spread everyone out so much that I felt that it created a less "teamly" atmosphere as opposed to all the walkers being closer and showing how large the group was. The other thing I must rant about is the people smoking during the walk who were also participating in the walk FOR A LUNG DISEASE!!!… Can't win all the battles I guess…
But! Drumrolllllll to the awesome information and reason behind this walk!!! MONEY FOR REASEARCH TO CURE ALL THOSE HAVING TO ENDURE THIS HORRIBLE DISEASE!! Thank you to those who participated or donated money to the Great Strides in Seattle or in your area, it DOES and WILL make difference!!
Shortly after the walk I received this in an email.
Thank you to all of you who came out and supported the Great Strides Seattle event last weekend. Over 900 walkers joined us an amazingly sunny day at the Seattle Center!
Thanks to you, we are projecting that this event will raise over $340,000 net to support research to control and cure cystic fibrosis!
Here are some photos of my group at the walk.
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.
Just wanted to make a shout out to my peeps out on the internet that I've found through various social networking sources, most are either fellow Cystic Fibrosis buddies or post/waiting for Lung Transplants. If you get a chance, check some (or all) of them out, they are all pretty awesome!!
I just learned that a transplant friend who I met in the hospital just as I got out of my surgery passed away. She came in my ICU room while I was still on the ventilator to share wisdom and hope with my mom and I during that time. She was so friendly, full of life and hopeful with her new lungs that she gave us the hope we needed to get out of the hospital with my mine. She was kind enough to stay and chat on a couple occasions answering questions and sharing wisdom. She even brought in a few other post-transplants to visit me. I am sending tons of prayers for her family and friends as I cannot even comprehend their loss.
"Life is not measured by the number of breaths you take but by the moments that take your breath away."
I am very grateful to have met Lisa as she will be someone I remember for the rest of my life, even though I barely knew her, she made an impact on my life. I am glad she was able to have the second chance at list with her new lungs as I have been given, because I know she won the fight against Cystic Fibrosis. Rock on Lisa, you were more than an awesome person and I know you will never ever be forgotten.
“And in the end, it’s not the years in your life that count. It’s the life in your years.” – Abraham Lincoln
I had to stay in Seattle only a few weeks after that ordeal. Since I was almost 2 months post transplant and I only live 2 hours from the hospital the doctor said I could return home! YIPEEE!! We were so excited, and so was our families little chihuahua Fuego, since he was my buddy all this time while I sat at home sick on the couch.
As soon as I got home I was up and running, literally. I started walking on the treadmill everyday right when I came home, rode my spin bike other days, and after a month or so I started a running plan. Soon after that I started hiking, biking, lifting weights, and of course just being a normal person. I could now shop, as in walk around with people who shop like their life depends on it, keep up with them and not get tired!! I was able to complete a 4 mile race as well as a 2 mile one, I was also able to ride my bike 26 miles and then a 13 ride that was mostly hills. I have also had the privilege of getting a puppy, as I had wanted to so badly before. I have been taking my puppy, Axel, to dog training, and working on his soon to be running buddy skills. All in all, I have never felt better, and I am stronger than I have ever been in my life.
So far I have had to be on an oral antibiotics as a maintenance a few times. I have had IV once due to some bacteria in the new lungs, but it seems to have cleared it up. I have had a few issues that led me to need quite a few bronchoscopys but better safe than sorry I say! The amount of medications I am now taking is a lot but I have gotten used to it and it is nothing compared to the rigorous treatments faced by the normal Cystic Fibrosis patient as I had done all my life. More recently rejection was found through a bronchoscopy where they had taken biopsies. I am being treated for that now and will soon be re-checked, praying that it all went away!
Now whenever I do something, such as run or ride my bike, I just think… this is so amazing. But then I started thinking. EVERYTHING is so amazing, because I wouldn't even be here right now if it wasn't for my amazing doctors and surgeons, nurses and family and friends, and of course my donor and their family. If you think running a race is amazing, I cant forget that walking to the bathroom by myself without oxygen is amazing, considering what I could do before, this is way beyond amazing, they don't even make a word for it.
WAKING UP IS AMAZING.
Thanks for taking the time to read my story! If you missed any of the previous part of the story they can be found in these links:
A few days later I had another doctor appointment and by this time I couldn't make it to the appointment (stomach acting up very badly) so we went straight to the E.R. Once we got in the emergency room they found out that my heart rate was over 220. They double checked it and sure enough… all the nurses and doctors in the E.R. came and game me an IV, then and IV medication to help calm and slow my heart. We had previously gone in for the stomach aches and vomiting but they seemed to be more worried about this (as it probably would have been cardiac arrest if I had been older).
To say the least they chose to keep me, I was admitted and then seen in the morning for my stomach problems. I think they decided the high heart rate was due to pain in my stomach. When they saw the CT scan of my abdomen they wanted to take me into surgery right away, only 3 weeks after my transplant. So my mom and I look at each other all sad, and then I go off back into pre-op. I did not have to wait long as I already had IV's and stuff and they wanted to get in there as soon as possible because my intestines were so backed up they could have burst. So they did the surgery, placed an epidural and I was back in ICU.
This time I woke up off the vent, HALLELUJAH, but feeling HORRIBLE. The pain and discomforts was like 1,000 times worse than the lung transplant. I feel for anyone with abdomen problems as it is ROUGH! I was not allowed to go home until I had a few regual bowel movements which took days, so I ended up being in the hospital for another week. Due to the placement of the epidural I had no feeling in my legs at all. Meaning I could not walk or more AT ALL. Not only could I not walk that week but when I got the feeling back in my legs I could not walk very well due to the abdominal pain I had.
Since it was really important that I walk and stay active for my new lungs I had a hard time for while. And for my mom and I, it was back to stay in seattle. Only this time a wonderful family allowed us to live in the apartment underneath their home! So I was out of the hospital once again, I could breathe, but I was staying on the couch a lot once again, it felt just like before, except worse, I felt horrible for not using these lungs. I knew I probably just needed time to heal but I still felt guiltily. Right out of the hospital the first time I was walking miles and hills. Now I was barely getting around the house, and boy had I lost leg muscle!
Read part 7 of the story tomorrow!!
If you missed the previous stories, you can find them using these links!
My Transplant Story: Part 1 – Listing.
I was then released from ICU, only a day after the vent was removed, and sent to the regular floor, where I was free of a lot of cords and IV's and I got to take my first shower!!! Which was awesome, you'd never know how much you miss water and showering when you have not gotten the chance for over 3 weeks. I also never want to see a baby wipe again! The other amazing thing (that I had not been able to do for over 6 months) was that I was able to shower by myself with ease!! Completely amazing.
After a day or so on the floor I was completely off all my IV's, eating good, walking, and people had been visiting. Besides how good I was doing I had very bad cabin fever and wanted to be home, the only bad thing about that was, I had to stay in Seattle for a while. For 3-6 months or whenever the doctors said I could return home.
I was only in the hospital a month (3 weeks ICU, 1 week regular floor) which after pretty much just getting out of the ICU we thought was pretty soon, but I was doing awesome and it was safer to be out of the hospital anyways. Going back to the thing I said about being sliced open and having one of your main organs swapped out, you would think that a month in the hospital isn't long at all! So my mom and I got a condo-like hotel in Seattle for the week, since it was my birthday that week, and a couple groups of our friends came down to celebrate it with us. Talk about the BEST BIRTHDAY PRESENT EVER. The gift of life!!! Really, tell me what can top that! My most amazing birthday celebration ever celebrating not only my birthday but my second chance at life which my donor and their family had given me so generously.
The only thing bad about my birthday is I had been getting sick over the past few days. Stomach issues, nausea, and vomiting. My mom and I were super sad since I had walked over a mile from the hotel just a day after we had checked in. As my tummy gpt worse I wasn't getting around as well and wasn't keeping food down. It was sort of off and on and we saw the doctor the next day and they gave me some anti-nausea stuff and said to try that as we thought I was just having trouble with all the new medications.
Read part 6 of the story tomorrow!!
If you missed the previous stories, you can find them using these links!
My Transplant Story: Part 1 – Listing.
It was super awesome that a bunch of my friends and family came to visit but each time was a bummer because I couldn't talk and I was pretty cranky most the time. I was pretty proud that a couple of friends flew a long ways to see me in the hospital. While others drove a long way, each person who came to visit meant a lot to me, even the ones I have no recollection of seeing (but they were there for my momma too!).
(We made a fake race bib because my mom had just ran a race and had the bib in her bag and we decided that going through the surgery was like running a race!)
While I was on the ventilator I used my computer a little bit, painted a horse sculpture thing, and annoyed my mom a lot. I tried really hard to distract myself but it was pretty difficult. It's weird how bad I wanted to be off the vent yet most of the times I was able to try to reduce support from the machine I would panic and have to let the machine breathe for me for the rest of the day. I realized that a lot of me getting off of the ventilator was my lungs and not me, as the whole time I sat there I thought it was my fault and that I was doing something wrong, even though they assured me I wasn't, I just wanted anything to speed up the process.
After a few rough times trying to reduce the breathing support I began to worry about my new lungs and how it would be to breath with them. A few times I did really well, and after I started asking to stay on the amount of support I left off on overnight, I started progressing more rapidly. As opposed to going onto full breathing support overnight so my body could rest while I slept, I stayed on the reduced support that I had practiced on that day. After a few days of less and less breathing support at night I had gotten to the point where I would soon be able to be off the ventilator. Which I was both extremely nervous and excited for at the same time.
I had finally made it to the limited support they wanted me to be at and me breathing more on my own with the ventilator in. After that it was just waiting, day after day, for them to say the vent could be taken out. I knew they had to be careful, because its dangerous if it had to be put back in where the lungs were sown in. BUT I WANTED IT OUT!!! Then one day, the respiratory therapist came in, and yanked that tube out, and I don't think I have ever been happier in my entire life! My mom said my face looked just like it did when I jumped out of the plane skydiving, a HUGE smile.
So after I got that out, the next goal was FOOD! But since I had the vent in for so long I had to wait a few days to make sure I didn't get food into my new lungs. When the lady came to check my swallowing they decided NOT to let me eat until like the next day in small amounts. I was mad but waited and then was very excited for eating since I had not eaten for over 3 weeks and did not get much real nutrition because my feeding tubes had been acting up the whole time I was on the ventilator.
Read part 5 of the story tomorrow!!
If you missed the previous stories, you can find them using these links!
My Transplant Story: Part 1 – Listing.