Sunday, November 17, 2013

Stanford trip 11.13


Heeeyyyy!

  Last week I had an appointment with Stanford in which case I had to leave the hospital in order to go. Something that I quickly learned I shouldn't have done. The appointment itself went really well, which is a first! And I met a new CF friend while I was there her name is Caleigh! :) The day I left the hospital (Monday) I felt great, I was ready to tackle Stanford and to see my best friend!!! And of course I went home on IVs. But the day we flew down there (Tuesday) was a completely different story. I was nauseous, cranky, had a bad headache and just overall feeling like crap. And this lasted both days I was down in california, each day worse than the next. Have you ever had to fly while being sick? Pretty much the worst thing in the world. I typically really enjoy flying but this was such a horrible experience. I sat and cried in the airport, on the plane, pretty much anywhere and everywhere I was. Since I was so incredibly nauseous I couldn't even tolerate my antibiotics and decided not to even bother doing them while I was gone, which was only over night. I hadn't gotten any sleep the previous two nights so that wasn't helping my cause any. It was just a miserable, miserable time. Even the doctors down at Stanford asked me why I was there seeing them since I was still clearly pretty sick. My answer; well my Kaiser doctors told I had to come. Come to find out, I didn't have to go... Thank you Kaiser doctors. 

  Sitting in the airport waiting for our flight home I had my mom call my doctors at Kaiser to ask them to just readmit me since I was still feeling so shitty. And they said I had a few options; 1. Be seen the next day at clinic. 2. Go to the ER when I land. Or 3. just stop IV altogether. In the past, after I'm on IVs for a certain period of time my body starts to kind of reject them and they actually start making me even more sick. So I decided that I would just go into clinic the next day to see my doctor. After all, I had already start to feel better since not doing my IVs for a day and a half. When I went in to see my doctor I did, we decided that what we would do would be based on what my PFTs (pulmonary function test) were. And surprisingly they were 21%!!!!! Which is the highest they've been since August!! So I came off IVs but we decided that a bag of fluids to maybe help filter out the antibiotics would be helpful before they took out my IV, so we did. And I honestly think it did help somewhat. And she wanted a urine sample to see if I had any ketones in it. Which appears when you haven't been eating for a few days and your body starts to eat the reserve your body stores and your muscles. It came back negative! But on the not so good side my weight is down quite a bit, I'm at 97 pounds :( now that I'm feeling better and not so nauseous I'm eating better and doing my night feeds! Hopefully I'll be able to put that weight back on!!!! 

Just our typical "reunited with my best friend" picture <3

Two very important girls in my life!

My lovely seeeester!!!!


  The last couple days I have felt 100x better than I had been! Which is SOOOO nice to be able to function like an actually human being! I'm sure there's more to tell but that's all I have for now. I'll update again in a little bit :) Thanks for reading, please like, share, and follow my blog :)

Good thoughts and prayers are always welcomed and appreciated!!!! <3
- Amanda :)

Monday, November 4, 2013

It's been way to long since I last posted!



 Heeeeyyyy everyone, 

 I know that I owe you all a big update and explanation for my lack of postings and I'm happy to say that I'm working on it! But for now just something short and sweet. 

  I just got readmitted to the hospital after being out for THREE very long weeks..yes that was sarcastic! I'm just sick again and not doing so well. But lately my pattern for coming in has been every two weeks for two weeks. This time however, I will only be here for about a week and then finishing at home because I have a trip to Stanford coming up on November 13th, that I leave for on the 12th. But since I'm not staying in california for a visit with my bestie like I normally do, I will be on IV when I go down. And as an added bonus my lovely little sister Ashley will be coming with my mom and I for this trip!! 

  Last time I was in here they found a hole in my heart. I'm told that it's fairly common in people with pulmonary issues and that I could have had it a year ago but they weren't aware until now seeing as how they didn't do the right test until now. There's nothing they can do about it right now, especially since it's not an issue right now. It's just something that they're gonna watch and it's something Stanford likes to know about. When I get my new lungs, I guess a lot of the time the new lungs will squish it closed. Or if the surgeon thinks it's a problem they will but a stitch or two in it to close it up. In my honest opinion, I think it's from a broken heart, so allow me to say thanks to my ex who broke my heart...literally. 

 Right now my pft's at best are 18% and I'm on 3 litters of oxygen 24/7. I can barely do anything, right now something as simple as talking is hard for me to do because I get so winded. I will try to post throughout my hospital stay about whats going on and everything. As well as working on my big update! Two dry runs (yes, two, I'll explain in my big update) and 7 months on the list and I'm still waiting for new lungs. 

  I hope and pray that my call comes soon. I am so ready for it. I'm ready to be done with this part of my life and to just move on. My goal is to be able to celebrate my 21st birthday (in march) with new lungs. 
Prayers and good thoughts are always welcome and VERY appreciated! Thank you for reading. 

P.S I have also created a Go-Fund-Me account. Please share and/or donate! Anything and everything is appreciated!  
http://www.gofundme.com/4bztkw

-Amanda :)


Thursday, June 6, 2013

My california adventure! (Part 2 - Best Friend Bonding)


   Here's part two of my california adventure! I am happy to say that this is the good part of my trip down to california. Once we got to melissas house, we were all extremely tired but our day wasn't quite over. We had been invited over to melissas parents house to have dinner with them! It had been far to long since I got to see them!! So I was pretty excited to have dinner over there, and for them to finally meet my mom! The following day was the day my mom was going home. Since her flight wasn't until 7 pm we had all day to do something. You would think the california sunshine would be motivation enough to get up and go out and do something but it wasn't... we pretty much slept..all day. We were exhausted both emotionally and physically from the day before. After sleeping for most of the day we went and got some lunch at this delicious local sandwich shop, gave mom a little mini tour of the town and college, and then headed to the airport. Never in my life have I ever seen such bad traffic/drivers in my entire life. Californian drivers are insane!!!! Anything goes, even if you break a law or twenty! Once we dropped off my mom at the airport, that's when the fun really started (sorry mom, love you)! It had been 8 loooonnng months since Melissa and I had some good quality best friend bonding time. We have always said that if at any time her and I were single together that there was a possibility that the world might end with all the trouble we would cause..yeah..well we're currently both single and the world is still standing.. we've definitely lost our edge. We were more of trouble makers before when we both had boyfriends. Granted my lungs have dropped a significant amount since then and she now works full time, that might have something to do with it. But anyways, our rein of terror started out with going home and going to sleep. Hanging out at the house is what we did most days but we also had some exciting adventures a couple days I was down there. One day we decided that my trip wouldn't be complete if we didn't do what we have come to know as our tradition whenever I come see her. Getting new tattoos!!!!!! Every time I go down to california to visit her, it just so happens that I end up getting a new tattoo and/or piercing. Last time I was there, I got both. My first trip down there I got a matching "just breathe" tattoo with melissa which is on our left sides, my second trip I got "unfold your wings" on my right shoulder, and this last trip I got "Dum spiro, spero" on the outside of my left foot! And melissa got two roses on her right shoulder!

My tattoos <3

   Another adventure we went on while I was there was to a beach! This was my first time at a california beach so it was really exciting!!! Typically a trip to the beach in oregon means wearing four plus layers and still freezing your butt off, wind constantly blowing, runny noses, ear aches and sometimes rain. Not the way the beach should be experienced! I also love being in the car so the long car ride to the beach was also nice. Once we got to the beach I was extremely happy! It was hot, not windy, good drinks and I was with my best friend, what more could I ask for?!! Laying on the beach for hours under the warm sun felt amazing!!!! The sunburn that resulted in me laying under the warm sun for hours, did not feel so great.. This was the first time I had ever been sun burnt, I normally tan not burn, so it was a little weird for me. But all in all it was a wonderful day with my best friend :) 

 Me and Melissa on our way to the beach!

Selfie on the way to the beach!!!!

Me, Kellie (melissas roommate) and Melissa <3

Stinson Beach <3
   
   I also wanted to go to a california mall while I was there. So we went to a local mall..it was about half the size of the one I go to at home. But hey, at least I got to go to a california mall! We were on a hunt for a new belly button ring and we looked in just about every store that sold belly button rings and were not successful on our mission unfortunately. After the mall we went over to melissas parents house for one last family dinner and so I could meet her grandma! I love her family, and I love that they think of me as part of their family! Thank you guys, I love you <3

Last family dinner before I left!

   On my last day in california melissa made appointments for the both of us to have massages and facials at her work (Massage Envy) before heading to the airport! I was excited to meet all her coworkers. Every time she would introduce me to someone they would say, without fail might I add, "Oh I've heard so much about you!" lol. Clearly melissa loves me a lot more than I realize! Both the massage and facial were absolutely incredible and something I will be repeating when I go back!!! Just what I needed before heading back to rainy ol' oregon.  Thank you melissa for planning the wonderful spa day for us :)

  Leaving is always the hardest part. I hate leaving her because I feel like a piece of me is missing once I leave and we're apart. Going back to reality is always hard to. Back to doctors appointments, responsibility, and just real life that I would rather not deal with. Lol. But I had to come back at some point in time. The trip was very much so needed!! And I cannot wait to see melissa in a few months! 

Thank you for reading! And as always prayers and good thoughts are welcome and very much so appreciated <3 If you want updates go "like" this facebook page  https://www.facebook.com/pages/Prayers-for-Amanda-Sue/540950289248971?fref=ts

- Amanda :)

Monday, June 3, 2013

My california adventure! (Part 1 - Stanford)


Hey hey hey!!

  I'm sorry that this post is so delayed! It's been a hard one for me to write because of how everything went when I was at Stanford. And because I'm opening up about something that's really sensitive to me. So please I ask, if you don't have anything nice to say, don't say anything at all. This post is just part one of my adventure to california. I will be posting about my actual trip there as well!

   As most of you know I had my first follow up appointment with Stanford on wednesday May 15th at 10:30 a.m. and since my appointment was so early in the morning my mom and I flew into california on tuesday! This is a trip I had been looking forward to for months and months. Strictly because of the fact that I got to see one of my best friends! On tuesday, my mom and I got to california at about 4 p.m. (I think) or so. Waiting to pick us up at the airport was Melissa!!!!! I was so freaking excited to see her since this trip down to california was under good circumstances. Once we found our hotel and put all of our luggage into the room, we went and got some dinner at Olive Garden (I know, I know, how surprising!). Seeing as how three of us had to get ready in the morning the next day we were up bright and early. We got to the hospital around 10:00 since we were told to arrive at least 15 minutes early. But for some reason or another weren't actually seen until 11:30 or so. It was extremely frustrating!!! While we were waiting to be seen though, I had the chance to meet two girls that both had CF! I love making new CF friends. All CFer's have this instant bond to one another! After waiting an hour past my appointment time we were finally put into an exam room just to wait some more. Because we all know that going to the doctors means playing the hurry up and wait game..most annoying thing in the world if you ask me. lol. I saw a transplant doctor, nurse (Lisa, who I love!), nurse practitioner (NP), and a social worker. This appointment was a tough one for me because I got yelled at multiple times about something that's a really sensitive to me. I take pain medication. Most CFer's or non CFer's that have "end" stage lung disease are in a lot of pain because it hurts to breathe. It's something that has become more and more common. But it's hard to open up about this because I feel really ashamed about the fact that I have to take pain medication on a regular basis and it's because of the bad stereotype that comes along with it. Anyways, literally every single time I see a doctor I get a lecture about how much pain medication I'm taking and the fact that I have to take them. So when the first person walked into my exam room I knew I was eventually gonna hear it from them.

    First up was the NP, she started out asking me how I was, what my breathing treatment routine is, and of course what medicines I take which of course lead to pain medicine lecture number 1 of the day... She was originally kinda rude about the topic but my mom said something to her before she could say anything to bad, which made her change her approach about the whole thing. And the conversation ended fine! The second person I saw was Lisa. She's the one person I look forward to seeing at Stanford. We just kind of caught up about everything that's happened since the last time I saw her, hospital stays, life, rehab, a little bit of everything! It was a nice visit! My mom, melissa and I had been curious as to exactly how many people are on the double-lung transplant list at Stanford. We were assuming that the number of people had to be in the thousands somewhere. Boy were we wrong. There is only 22 people on the list. Crazy right?!?! And of those 22 people, I am among the bottom of the list, therefore on the "healthier" side of patients. Never in my life have I been considered healthy anything. The third person of the day was the doctor. He was pretty pleasant to talk to, but of course the topic of pain meds came up. And instead of yelling at me and making me feel bad about taking them and doing absolutely nothing to help me. He actually sat down and gave me a starting point on how to cut back. He was the first and so far the only person that has done this. It was nice finally getting some help with this issue. I was also informed that there are alternative medications I could be taking that aren't narcotics/habit forming medications, that will help my pain in the same way. My question to that was, why the hell was I not put on those first then?!?!?!?! Thank you Kaiser for creating this problem for me that in all reality could have been avoided. I'm sure you all have heard the phrase "they save the best for last" sometimes this can be true, but this day was definitely NOT one of those times. The last person I saw was the social worker. When my mom and I went down to Stanford the first time, my first impression her (social worker) wasn't necessarily the best one. There was just something about her that I wasn't impressed with. And I feel like if she is suppose to be the support person for my mom and I when I go down for transplant, she should be someone I feel comfortable with/sharing things with. So going down this time, I was willing to give her a second chance. Well this second chance was officially blown. I'm not going to go into details about what was exactly said because I honestly can't remember what exactly was. She was extremely rude about the topic of my pain meds and by the end of the conversation I no longer wanted to be on the transplant list, that's how horrible my appointment was.

    After I was finished being yelled at/reprimanded by everyone I finally got to leave, but not before I had to go get some labs done of course.  Honestly, what I really wanted at this point in time was a drink. lol. The second I walked out of that hospital though, my vacation began and I didn't have a care in the world. We had about a two hour drive to melissa's house. Since, I love being in the car to me, there's nothing better than being with my mom and best friend, having a little mini road trip. On our way home we made a pit stop at Pier 39 to show my mom around the pier and all the seals!! (picture below)!! We also, had lunch at The Hard Rock. I've always wanted to eat there but I wasn't impressed with the service or the food. So it was kind of a disappointment. We got back in the car and continued on our journey home. On the way home, we had to cross the Golden Gate Bridge. Which is something my mom really wanted to see since she never has before. I love it, I think it's so pretty. But my mom on the other hand was sad that the Golden Gate Bridge wasn't actually golden.... lol. Silly mom! After an hour and a half of stop and go crazy california traffic we finally got to melissas cute little town house!

They all smelled horribly!!!!


This is a facebook page I have set up to make it easy for people to follow what's going on. Please "like" it if you want updates! 
https://www.facebook.com/pages/Prayers-for-Amanda-Sue/540950289248971?fref=ts


- Amanda :)

Tuesday, May 7, 2013

It's been awhile!


Hey!

    I know I haven't blogged in awhile so I thought I would write a little update about whats been going on! As most of you know from my previous blog posts I had my first fundraiser earlier this week (on monday). It was cut-a-thon/raffle at my aunts hair salon (Strut Salon). And I'm happy to say it was a big success!!!!! Koin 6 news even came to cover the excitement! If you wanna see the news casting click here - https://www.facebook.com/photo.php?v=623916517637027   For the raffle we had received donations from a bunch of big businesses and some from small local ones as well. On top of all the hair cutting that was going on, one of the hair stylist also was doing face paintings! We also had two wonderful guys from Mack's Finer Foods, who sold "The Pappy Dog" aka the most delicious hot dogs ever!!!! And that's a lot coming from me because I'm not typically a big hot dog fan. Along with the hot dogs, there was a lady that set up a little table and was selling chocolate covered strawberries, cookies, and stuff to make mimosas! All of which were delicious! I can't begin to thank EVERYONE who had any type of involvement with this event. From donating, putting it all together, helping out, cutting hair, serving food, or just stopping by to say hi to show your support. THANK YOU!!!! It means more to me than anyone will ever know, I'm truly blessed to have so many wonderful people in my life that love, care and support me! And I am proud to say we raised $2,000!!!!!

The table full of the raffle prizes!
Hot Dogs!!!!
Mimosas, Chocolate Covered Strawberries and Cookies!

 Face paintings that were done :) so much fun!

Katrina, she curled my hair that day!! 

All of the wonderful hair stylist and barbers that participated that day :)
THANK YOU ALL!!!!!

    The day after my fundraiser I was put in the hospital (tuesday april 30th). I probably should have went in about a week earlier but I wanted to hold out because I didn't wanna miss my fundraiser. So I held out until the day after! When I got admitted my PFTs were at 21% and I was down a few pounds, my normal sickness issues. The first day in the hospital was a pain the ass, as it always is. I didn't get my port accessed until 1 a.m. due to lack of communication on the staffs part. It was very frustrating! But other than that one little thing, my hospital stay was a rather pleasant one! On my third day in the hospital I redid my PFTs because Stanford needed them before I go down for my appointment on May 15th. And they had came back up to 27%!!!! Which is great!!! After being in the hospital a week, I was released today on home IVs that I will be on until Monday. I'm happy to be out of the hospital and able to enjoy this amazingly sunny weather we have been having here! I love the sun!!!! In the meantime my mom and I are preparing for our upcoming trip to Stanford. We're going down for a followup appointment. Every three months or so I have to have one. So we leave on May 14, my appointment is May 15th, my mom leaves on the 16th, but I get to stay and play until the 21st!!!! I am SOOOO excited that I get to stay and spend some one-on-one quality best friend time with Melissa!!!!! I miss her so much!! It's been far to long since we've seen each other on good circumstances. So it should be a great trip :)

Becca wanted to paint my toes! I'm one spoiled patient <3

   One last thing, seeing as how it is May, which means CF awareness month. Please share the link to my blog, wear purple, or donate to the Cystic Fibrosis Foundation or to me and my family for my transplant. Anything and everything helps!! We are in the process of planning more fundraisers and when we have definite plans, I will post the details for anyone who would like to join!


How CF happens!

How to donate to me and my family!
 1. You can go to and US Bank and make a deposit into my Real Heroes Become Angels bank account.
 2. Donate through paypal! Copy and post the link below :)
https://www.paypal.com/cgi-bin/webscr?cmd=_donations&business=LNZBSNX7MA95S&lc=US&item_name=Real%20Heroes%20Become%20Angels&currency_code=USD&bn=PP%2dDonationsBF%3abtn_donate_LG%2egif%3aNonHosted

Thank you all for your love, care, and support! Prayers and good thoughts are always welcome and very much appreciated. <3

- Amanda :)

Thursday, April 11, 2013

Fundraisers, bank information, and paypal!


As you all know I am currently on the transplant list. And there is a lot of family expenses that come along with that. So we are having some fundraisers to help raise money for me and my family!

Fundraising Events
Monday, April 29th 2013 - What: Cut-A-Thon and Raffle
                                           When: Starts at 10 A.M.
                                           Where: Strut Salon 1909 NE MLK Jr. Blvd. 
                                                       Portland, Oregon 97212

Details: This is going to be a Cut-A-Thon and a raffle. Local business will be donating things to be raffled off. You will receive a raffle ticket with a minimum donation on $20 dollars with each haircut. For every $20 dollars you donate you will get one ticket. All proceeds will be going to my family and I. We are currently accepting donations to either raffle off. Or if you would prefer to donate directly to me, that's welcome to! Thank you!




Fundraisers
I am still selling bracelets! If you are interested in purchasing some bracelets you can send me an email (listed below), leave a comment on here, or contact me through my facebook (there's a link on the right side of my blog)!

Cost: $3 dollars each
                                                          

Email: realheroesbecomeangels@yahoo.com


Bank Accounts and Paypal
I have a donation bank account set up for people to make donations if they would like to. You can go into ANY US Bank and make a deposit into the 'Real Heroes Become Angels' account.

OR

You can go through my Paypal account! (Copy and past the link and it will take you to a donation page) Sorry, I couldn't figure it out!

https://www.paypal.com/cgi-bin/webscr?cmd=_donations&business=LNZBSNX7MA95S&lc=US&item_name=Real%20Heroes%20Become%20Angels&currency_code=USD&bn=PP%2dDonationsBF%3abtn_donate_LG%2egif%3aNonHosted

              
-Amanda :)

Just an update and some good news!


Hey everyone!

   I just wanted to post an update about whats been going on ever since my 'dry run' adventure. I have been seeing a social worker, who I am very close with every week since I've been back. It's definitely helped me with all the anxiety that I have about what happened and about everything that's going to happen. Having my CF friends helps a lot to! As I've mentioned before I have became pretty good friends with my friend mikalya, who got her transplant on March 18th. And I'm happy to report that she is currently at HOME, recovering from her life saving double lung transplant. Being able to follow/talk to her since she got her transplant has been really nice for me and has put my mind at ease with some things I had been stressing out about. Please continue to pray for her though! On april 5th, I was put in the hospital because I had gotten CF sick and needed a little pick me up. So I was in the hospital for 9 days and then got released to finish my antibiotics at home. And today I came off of IVs!!! Yayayayayay!!!!! When I was admitted my pfts were down to 20% and my weight was at 102 pounds. Today I am 107 pounds and my pfts were 26%!!!!!! My pfts haven't been that good since September!! I got some bad news today though to. Every year there's a big CF forum that is for CFers and CF families  doctors and whoever else is involved in the CF world. It's a big event that updates everyone on all the progress that has been made. Well I was planning on going but I got a call today saying that I can't go because I grow one of my stands of pseudomonas is resistant to all forms of antibiotics  And since CF patients are contagious to each other, I'm not allowed to go. I was really upset when I got the call from my doctor. For now, I am doing pretty good and I hope that it continues to stay this way.

Me IV free!!!!! :)

Which one do you prefer?


Prayers and good thoughts are always welcome and appreciated <3

- Amanda :)

Tuesday, March 26, 2013

Being the odd one out



   I got my test results back from my sleep study a few days ago. When I sleep my oxygen levels drop a few times but not for a long enough amount of time to qualify me for oxygen at night...of course.. why would anything come easy for me? But the study did show that there's a possibility that when I sleep I'm doing something to block my airways occasionally. So next time I go to the doctors I have to talk to them about it to see if they want to do anything. As for now, I plan on using oxygen when I sleep because I personally think it helps me. 

   On a completely different subject, I went to my friends house the other night for a girls night. I was really excited to be invited over for a girls night, especially because I hadn't gotten to have a girls night in a long time. When I got there I was really excited to see my friends. I absolutely LOVE spending time with my friends and seeing my friends. But lately I've realized that being around my friends is really hard for me emotionally. And I always feel left out, even though I'm not. I've never really been a "party girl" by any means but I do drink on occasion. And having a girls night would've been one of those occasions. Obviously, since I've started getting really sick and since I started this whole transplant process I have stopped drinking altogether. Just because I don't want anything to jeopardize me getting my new lungs. I would hate to get my call and to have to say "Sorry Stanford I'm drunk right now so I can't take these lungs, maybe next time". How good would that look? So when I got to my friends house and saw the three bottles of alcohol on the counter I automatically felt/knew I was gonna be the odd one out..as if showing up with oxygen on didn't make me feel that way already. Don't get me wrong, I'm not ashamed of my disease or anything like that. I'm just not use to having to wear oxygen quite yet. Sitting there listening to them talk about college life, work, the classes they have to take that's gonna 'kill' them, who's dating who, and whatever else. I just think, I would give ANYTHING to have those petty things be my biggest problems in life right now. I would give anything to be able to act my age for once in my life. But instead I have to worry about if I took my medication today, did I do my breathing treatments before I left the house, and am I gonna get my call in time. And if I do get my call, what if something goes wrong afterwards. I understand that to some people those things I consider petty are/can be life changing events to others. I just wish people would be more thankful for that they have. And more cautious of what they say or do when others are around. 

My friends!
Jen, Me, Juli, Bree, Alexa, and Jenna :)
(left to right)

   Prayers and good thoughts are always welcome and appreciated. Also, please continue to pray for my cyster Mikayla, she has hit a few bumps in her road to recovery with her new lungs. I am also still selling my 'Just Breathe' 'Amanda' bracelets. They are $3 each and all of the money goes to help with the expenses that my family and I have throughout my transplant process. Thank you <3

-Amanda :) 

Wednesday, March 20, 2013

Learning to walk again


Hey everyone,

    After battling the doctors for a good three or four months now, today was the day I finally won and was written the prescription for at home oxygen! I had an appointment today to get a machine for my at home sleep study that I have to do tonight, to see if my oxygen saturation drop when I sleep. I have a sneaking suspicion that they do, but we'll see. It has only taken them months and months to run this freaking test. But while I was at my appointment, I mentioned to the lady that when I do something active such as taking a shower, getting ready for the day or going shopping, I become really short of breath really easily, therefore making it hard for me to do stuff. So she decided to walk me up and down the hall and a set of stairs to see if my O2 dropped. And after walking about 500 feet not even making it to the stairs, it dropped to what I like to call my magic number of 88%. Anything under 89% qualifies you for oxygen. I was so happy/relieved when she said "You just got yourself oxygen!" It's a very bitter sweet thing. Bitter because it's a realization that I'm officially sick enough to where I need oxygen. But sweet because I'm gonna be able to function better and I'll be able walk the mall again. Something I haven't been able to do in about six months or so. I'm so excited!!!!! The little things in life that people take for granted. 


Top picture: The thing I have to sleep with on my finger.
Bottom picture: The machine it's connected to.

All the oxygen tanks I was given today..So many of them!!!

Left picture: My main oxygen machine, I use at home.
Right picture: Me after they set up my machine. It feels amazing to breathe a little better! <3

    I'll get my results back from my over night study most likely on friday. When I do,  I will be posting again. Since I am officially on oxygen now, I may be moving up on the transplant list. I'm not 100% sure yet if this will have any affect on my score (where I'm placed on the list). It's all gonna depend on my results. All I know for sure is that it's gonna make traveling a little bit harder. Also, I am still selling my "Just Breathe" "Amanda" bracelets to help raise money for my transplant. All the money goes to expenses my family and I are going to have. Especially plane tickets to get my family down to california ASAP after I get my call. If you are interested in buying one or however many you want, please feel free to comment on this post or send my a message on my facebook (the link to my facebook is on the right hand side of my blog). 

The bracelets I'm selling!!!! $3 dollars each :)

Prayers and good thoughts are always welcome and appreciated ! Also, please pray for not only me, but for my cyster Mikayla, who just received her transplant on Monday <3

-Amanda :)

Thursday, March 14, 2013

My "dry run" was not fun but I had a good birthday!


Sorry this is gonna be such a long post. But it was a LOOONNGGG 24 hours, so just bare with me!!!
    
   On friday march 8th at 7:47 pm, I got the call that there was a possible set of lungs for me down at Stanford. You can imagine my surprise when I got this call after being on the list for only 8 DAYS!!! Instead of the 6-12 months it was suppose to take for me to receive a set of lungs. Needless to say I was not prepared whatsoever to for this phone call. With tears in my eyes and still on the phone with the doctor, I ran out into the living room where my mom was to tell her who I was on the phone with but all I could manage to get out was the word "pack". It took her a second to catch on to what I was saying, at first she thought someone had died and I guess in a way someone had passed away, but not in the way that she thought. Once she finally understood what I was telling her, she ran straight to the bathroom (she has really really bad nerves!). The doctor asked me how fast I could get to the airport and I told him that I could be there in a half hour and he said good and to head to the airport as soon as we could and that there was a plane (air ambulance) waiting for us but to not get on it until we heard back from him because he was still waiting for the final scan of the lungs to come back. After I got off the phone with him, naturally I started making my phone calls to everyone important to me that needed to know. Of course my first call was to Melissa to tell her that she needed to pack and to head to the hospital. While I was texting and calling my friends and waiting for the doctor to call me back, my mom was making the calls to our transplant coordinator to have them set up our flight and for them to contact Stanford to make sure it was actually a go (which we already knew everything was set up because the doctors had told us it was). Since it was after hours we couldn't speak with our regular coordinator and had to speak with the lady that was on call.. she was completely incompetent at her job and tried to put us on a commercial flight rather than an air ambulance.. ultimately the doctor ended up having to call her (which is something that should NOT have to happen). Right after we got off the phone with people my mom, sister, and I start throwing stuff in our small carry on suitcase, which can't be over 20 pounds I believe. Because it had only been 8 days we hadn't had a chance to pack anything at all!! I was still in shock from the phone call I had just got I was frozen, completely frozen sitting on my bed. Once my dad got to my house, with my whole family in the car (mom, dad, brother, two sisters, dads girlfriend, and her little girl) we were off to the airport. We got there in record time I'm sure of it, we weren't sure where we needed to go exactly and we had an address (which ended up being the wrong address). So we drove around the airport and of course the first place we had originally went to ended up being the place we needed to be at. And had we known that it would've saved us a good 15 minutes of driving around. When we walked into the building a nurse greeted us and had me sit down in a chair while we waited for the doctor to call back. Meanwhile, I had been texting two of my friends who were on their way to see me before I got on the plane. While we were waiting my mom got a call from the transplant coordinator telling us that my mom wasn't gonna be able to come on the plane with me because they had just fueled up the plane, therefore we would be over the weight limit. This would not have been okay, I would not have gotten on the plane without my mom. There's no way in hell. But the nurse had reassured us that my mom would be coming with us because once we got in the air and started to burn fuel, it would be fine! After waiting for 10 minutes for the doctor call back, my mom ended up calling him to see if the scan had came back yet or not because we were on a bit of a time crunch because our pilot was gonna be grounded and if we didn't take off soon, we would've had to have stopped in Bend to switch pilots. Finally, the doctor gave us the "okay" to get on the plane and head down there and that he wanted us down there by midnight (it was probably around 8:45 at this time). Literally as we were walking out to the plane, my two friends come running through the door after me. Hugging and having to say goodbye to my friends and family was one of the hardest things I have ever had to do. Saying goodbye to my brother and sisters was tough, but saying goodbye to my dad was the hardest. Because for me when I see my dad cry, I really know something is wrong. And when he hugged me I know he didn't wanna let go.

    The flight there was the longest/coldest flight of my life. I got strapped to a gurney, which was nice because I could at least try to get some sleep before we landed. Didn't work out to well. The whole flight, I had a blood pressure cuff on my arm and an O2 monitor on my finger, which was kind of annoying. It was a good thing they didn't check my temperature because if  they had I'm sure they would've freaked out because I was so freaking cold due to the fact that the plane temp never got over 52 degrees for the whole two hour flight. It was extremely cold!!!!!! Once we got up to our max altitude my O2 dropped down to 85% (anything below 89% requires oxygen) and because it dropped I got put on oxygen for the remainder of the flight. Our pilot had never been to the airport we were landing at before so he landed the plane at the back on the airport, not knowing where the ambulance would be coming in at and thinking it would come to us. Nope...we were wrong, we had to go to them because when we landed it was 11:30 or so, and the gates at the airport were locked making it so they couldn't come to us. So we had to walk to them, had I walked the entire way, it probably would've been about a half a mile walk. Something I obviously couldn't do. I walked what distance I could and then waited for the paramedics to come to me with the stretcher. We got transported to the hospital with lights and sirens, it was pretty cool! But my mom had a really hard time not throwing up because she gets really bad car sickness and a 20 minute drive, took us about 5 minutes... that should give you a pretty good idea about how the ride was. Lol. I never thought that the back of an ambulance would be a place anyone would get hit on, but I most definitely did!

The air ambulance that took us to california

 Me trying to "sleep" on the flight down there.

    When we got to the hospital, they instantly started prepping me for surgery. And when I say instantly, I mean, instantly!!! My nurse followed me into my room and told me to start taking off all my clothes and to wipe myself down with sanitizing  pre-surgery wipes. Which I hate using and I what I hate even more is having to wear a hospital gown.. But I figured there was a pretty just caused for me to wear one, so I didn't argue! After I had got changed into my gown, a nurse came in and started taking labs. She probably took a least 24 vials of blood from me. After the first nurse finished what she was doing an EKG tech came in to run an EKG (they just put little stickers all of my body and took it up to a machine, super quick and painless). Once the EKG tech was finished an x-ray tech came in to take a chest x-ray. Mind you I saw all three of these people in a five minute period. Everything was super rushed. After everyone was finished with their test the first nurse comes back in to start a peripheral IV in my arm, since my port wasn't good enough and was probably gonna be taken out since it was in the way of surgery. Putting the IV in the first time, she got it right now. But when she went to pull out the actual needle and leave the plastic one in, the plastic one came out as well because she didn't hold it down...naturally she blamed it on me, and I was in no mood to argue. But unfortunately because she missed the first time it took her an extra half hour to find another vein. Thank god she eventually did. After all that craziness was over (around 1:30 AM) the surgeon came in to introduce himself to my mom, melissa, and I. Most surgeons have horrible bedside manner because they think they're God. But not him, he was amazing! He made me feel completely comfortable even when he was telling us about all the risks and what to expect after surgery. And it was in this moment he confirmed one of my biggest fears I've had my entire life. Which is that I was going to wake up with a breathing tube in and that there was a possible chance I could remember it. I'm not sure why but that has always been one of my big fears. Waking up and being dependent upon a machine that breathes for me. I realize that it is only in as long as I need it in, until I wake up enough to breathe on my own. And that could take either a few days or it could be taken out that same day! Yes, this is something that one day I will have to face, but right now, it scares the hell out of me knowing I'm gonna have to face it. He also informed us that we were still waiting on the donor lungs to arrive and that there is a 10% chance that when he actually held the lungs in his hands that something could be wrong with them. But it was really rare that, that would happen. 

Last minute kisses from my mom and mel before I left!

People let me tell you about my best friend <3


    Around 2 AM I get wheeled back into the OR. At first I was wheeled into the hallway of the OR so I could talk to the anesthesiologist before I went back. He asked me when the last time I ate was and I told him that had ate at around 7:30 PM but it was just a little snack and that my stomach tends to empty VERY slowly. Something I learned the hard way when I was younger. But he thought it would be fine and wasn't worried about it at all! Finally they wheeled me back into the OR and moved me over onto the operating table, started placing a bunch of wires and blankets on top of me (blankets because it was so freaking cold!!!). After they got me all settled on the table, they finally gave me a light sedative, THANK GOD!!! I don't really remember much after they gave it to me but I do remember occasionally waking up to look at the clock to see what time it was. And I guess during my waiting time I had sent my nurses out to check on my mom and to tell her that I loved her. The next thing I remember is the doctor waking me up to tell me that the lungs were a no go because he feared later on they would develop cancer, even though the pathologist had ran test on them and they came back cancer free. After that they brought back in my bed and I moved over and got back into that bed and they took me back to my room. I got back to my room around 5 AM. And yes, that means I laid on the operating table for three hours for them to tell me the lungs were no good... I slept from about 5 AM-11 AM, which was some really shitty sleep but it was sleep at least! 
    
    When I woke up later that morning my mom filled me in on what had happened with the lungs. And apparently when they would take out an organ from the donor body, it would cause the body to bleed uncontrollably. So when they needed to take an organ out they would have to stop the heart first. Well when you stop the heart, the lungs would take a hit. The second problem with the lungs is that when the surgeon was holding them in this hands he felt these "nodules" around the outside of the lungs and feared it could be cancer. So he called in the pathologist to come run all his test on them. Of course being the fact that it was 3:30 in the morning and that he was at home asleep, it took a little bit for him to get to the hospital. The test came back clear of cancer but because I am so stable at where I am, he decided to not put them in me because I was better off without them! I'm very thankful he made that decision because I don't want lungs that are just going to cause me more trouble. We asked if anyone had gotten those particular lungs and we were told that unfortunately no, no one had received the lungs because I was the only one that had been prepped for surgery. The other question we asked was how did I end up the one being called when I was so far down on the list? Well there was four other people ahead of me on the list that should have gotten the lungs before I would've but for some reason or another it didn't work out for them this time. 
  
   I got discharged from the hospital at around 12:15  or so that day. After I was discharged my mom and I sat outside and got to enjoy the sun for a little bit while we waited for melissa to come back to pick us up and take us to the airport, seeing as how she had left when I went back into surgery. Getting on the flight to come home, was the best thing in the world! I couldn't have been more happy to land in Portland! 

View on the flight home

    Since I've been home I was received two calls from the Palo Alto area code and every single time, I think I have a mini heart attack! It's not fun to experience at all. I have been second guessing myself since this whole thing happened. I need time to mentally prepare myself for this. And 8 days just isn't a long enough time. I am now going to see a social worker once a week to help try to manage my anxiety! My mom and I now have a bag packed and ready to go! I'm hoping that I don't get called again anytime soon but when I do get called again it's not gonna be another "dry run"! I can't imagine going through all this without my support system that I have! Just saying thank you doesn't seem like enough. But it's all I have right now, so thank you to EVERYONE who loved, supported, prayed, and cared about me while this crazy 24 hours occurred. Especially to my family but mainly my mom. Mom if you wouldn't have been by my side through this entire process there is no way I would've even considered stepping onto that airplane. You're where I find my strength, my fight, my bravery, everything that keeps me going! I love you more than words can even describe. I owe you everything and nothing I ever do will be thanks enough. I love you mom, you're my best friend. I also want to thank everyone else who stood beside me. Even people I have never met before, thank you. I want to send a special thank you to the flight crew I had. I couldn't have hand picked a better flight crew to transport me down to Stanford. Thank you all soooo much for everything you guys did! :)

On a happier note!!! My birthday was on tuesday!!!

    My 20th birthday was on tuesday!!! At midnight three of my friends, Alli, Bree, and Juli, came to my house with flowers, candy, cake, while singing happy birthday to me. It was a good way to start my birthday! And since they were at my house tell 2 in the morning I slept in tell 11 that day! It was so nice :) once I woke up, and got ready for the day I went and got my free birthday dutch!!!!! And later that day I had a huge birthday dinner at Olive Garden that consisted of 20+ people! It was an amazing birthday and I got a lot of cool things :)

Top picture: All of us girls. Juli, Alli, Me, and Bree!
Bottom pictures: Candy and flowers they got me :)

 Top picture: Bracelet Travis got me.
Bottom left: A framed picture of him and I
Middle picture: A picture he drew for me!
Last picture: Him and I at my birthday dinner :)

A ring my mommy got me for my birthday <3

Thank you all for your love and support! Prayers and good thoughts are very much so welcome and appreciated. I love you all <3

- Amanda :) 

Saturday, March 9, 2013

No longer 35!!

Hello to all!! This is Karrie, Amanda's mom. Around 8pm tonight Dr. Lee from Stanford Hospital called Amanda to let her know that they had new lungs for her. So after freaking out for a few minutes we got packed and made the phones needed to get us to California. The air ambulance was really cold like 53 degrees, however the crew was super nice.
It is now 3:04am and we are still waiting. Amanda is the surgery area and I am in the waiting area. We still don't know if the lungs are going to work as the doctors haven't seen them yet. All the test indicate it a go but until they see them we wait.. Thank you all for your love and support.

Monday, March 4, 2013

I'm number 35!


Hey everyone!

    I got some amazing news the other day and as of Thursday, February 28th at 11:52 a.m I am OFFICIALLY on the magical list to getting new lungs! To go along with the exciting news of being listed, they also told me where exactly I am on the list. I am number 35, out of how many I'm not sure. But I was told that I'm roughly around the middle. I most likely still have a 6-12 month wait but that could change at any point in time. And depending on when I get my call my sister might get to come with my mom and I! If I get my call after she graduates in June, she will be coming with us as my second caregiver. Since my mom and I have been told it will take two people to care for me after transplant. And there isn't anyone else in the world I would rather have there by my side taking care of me, because I know no matter what is going on, no matter what the situation is, or how hard it might be for her to see me in the condition I'll be in afterwards, I know 100% she won't let me down. With all that being said, I will be starting to do some fund raising so when the time comes my family will be able to fly down to be with me. And of course to cover some other expenses that will occur. So I will be creating a facebook page that will be updated with fundraising events, times, places, and updates about what's going on. I will also have links on here and on the facebook page as to where people can go to donate. Also, I may be switching my blog over to a organization called COTA (Children's Organ Transplant Association). It's a nonprofit organization that helps raise money for me and deals with all the taxes and what not. To learn more about COTA go to, http://www.cota.org/ If I end up using COTA from what I understand, they don't allow you to have any other blog source, other than the one on their website. Stupid I know but oh well. I will post about it when we make a final decision.

    After fighting it for a little over a month, I finally caved and broke down and allowed my doctors to put me in the hospital on Tuesday (the 26th). When I got here my pfts were 20% and I weighed 98 pounds. I don't even remember the last time I weighed 98 pounds. I was so miserable when I first got admitted. I couldn't breathe, I didn't wanna eat, and I had this horrific headache that I had, had for about two months. Nothing would get rid of it or make it better in any way. And it was always at it's worst when I woke up. When I talked to my doctors about it they told me to do the following. 1. Take ibuprofen  2. Take tylenol  3. Massage. And when I told them I had done all those things and asked them what they were gonna do to help me.. They told me to meditate. ARE YOU SERIOUS?!?!!! Screw off doctors, thanks for absolutely NOTHING. So I asked if I could wear oxygen for a night to see if maybe that would help. I had a sneaking suspicion that it would! And guess what..it did! Because it helped, I asked to do an overnight O2 monitoring, where they hook me up to a machine and put this thing on the end of my finger that reads how much O2 I have in my blood. My O2 levels have always been good, always over 94% (normal range is 89%-100%). With my PFTs being as low as they are, it's amazing that my O2 isn't low. The first study I did, my results came back normal. The second one I did, they came back a little low but for some reason, the recording of my numbers wasn't good enough to qualify me for oxygen at bed time. And Kaiser is making me jump through yet another unnecessary hoop, why they make everything so difficult for me, I'm not sure. And I have to do an outpatient study. Now don't get my wrong, I am very thankful that I don't need oxygen all the time and that my numbers are good. But it would be really nice to not wake up with a headache every day. Hopefully the people that schedule the at home study, call me ASAP! If I don't get a call by wednesday, I will be calling them.   Luckily this hospital stay was a short one and I got to go home on Sunday, the 3rd (on home IVs of course though). Most definitely better than being in the hospital! I'm happy to report that while I was in the hospital I also put on three pounds (which is a big deal for someone who has CF and can't put on weight to save their life)!!  
Hospital stay boredom!

    While I was in the hospital I was lucky enough to have some very lovely visitors! I got to see two of my favorite cysters :) and I got to see my cute little nephew Liam, who I totally adore!! :)

Liam!! The right picture is my favorite because I feel like he's saying
"come at me bro" :) hahahaha he's so dang cute!


Alma and I! We were port accessed/IV cyster twins :)

AAA Cysters! They came to me for our weekly date!
Addie, Me, and Alma <3

I also got some very beautiful flowers while I was there! 

Top left is from: Sue, Boo, and Johnny
Bottom left is from: Travis
Top right is from: Sam, Jessica and Liam
Bottom right is from: Addie and Aaron
Thanks guys <3

    Quite frequently you will hear me talking about getting my port accessed. I know that many of you have no idea what that means or what it entails even, so I thought I would post a video of me getting my port accessed. The size of the needle that is being used is 3/4 of an inch long. Where it is being placed, has been numbed with numbing cream, so I'm not just having it shoved in my chest without it being numbed. You would have to be crazy to do that. But sometimes the numbing doesn't always work as well as it should. After the needle is placed inside of my port, you will see the nurse flush some saline into it and pull back for blood return. Seeing blood return is the most amazing feeling ever because that means it's in the right spot and we don't have to try a second time! If you have any questions about the video or anything, please feel free to comment and I will respond!! Here it is: WARNING: If you have an issue with needles, DON'T WATCH!!!! 



    On a different note, in 8 days I will be 20 (march 12th)!!!! So excited to no longer be a teenager anymore and that I get to celebrate another year of life! I'm so thankful I've made it this far in life when I shouldn't have made it past six, so to be alive 14 years later is absolutely amazing! I'm not exactly sure what I wanna do just yet, but I will post and let everyone know how it goes! I should hopefully come off of IV on monday the 11th, so just in time for my birthday! 

Prayers and good thoughts are needed now more than ever, since I can get my call at any point in time now! Please pray that, that call comes ASAP and that everything will go wonderfully! 

- Amanda :)

Friday, February 22, 2013

Left behind: I just need to vent


    As I right this blog tears fall from my face because right now my CF is getting the best of me. Sometimes I just a moment to break down and cry and let everything out, and that moment is now. And I know that all of my fellow CFers will be able to relate to this post. Even though I try to put up this front that I'm not scared, tired, frustrated, angry, lonely, or weak, I can't always be strong all the time. It's not something we like to admit but it's true. I hate CF sometimes. I hate the fact that it controls my life even though I try not to let it. I hate that because of it I'm missing out on so many things I should be doing. Constantly being sick really puts a damper on getting to act my age. Right now I should be attending college, partying, living on my own. And my biggest problem should be what I'm gonna do for my 20th birthday next month. But instead I'm thinking about things like, when my next hospital stay is gonna be, how many breathing treatments I did today, whether I ordered my medications or not, or what appointments I have this week. And most recently, whether or not I'm gonna for sure be offered a spot on the transplant list or not. Even if I am offered a spot, I worry about whether I'm actually gonna get my lungs in time. I'm thankful and blessed to have people that stand by my side. But sometimes it's just not enough. Because people that say "I'm always here if you need me." aren't always there when you need them. They have their own lives, and are lucky enough that when CF becomes to much for them to handle or something better or more fun comes along, they can get up and leave. Unfortunately though, I don't have that luxury. No one with CF does. I'm stuck, trapped in a body with lungs of a 90 year old woman, that don't allow me to be the 20 year old that I want so desperately to be. I would give anything to have the life that I'm watching all of my friends live right now. 

I just needed to vent. Thanks for reading. Prayers are very much so needed right now. 
- Amanda

Saturday, February 16, 2013

Stanford!!!!!


Hey everyone!

    Before I talk about my trip I want to clear a few things up. 1st- No, I did NOT move to california. When I receive my transplant I will have to live down there for at least three months. But until then, I'm not moving anywhere. 2nd- I have no idea when I'm gonna be getting my transplant, it's NOT something you schedule, so unless you can tell the future, you're guess is as good as mine. 3rd- Getting a transplant does NOT cure me of CF. CF is a genetic disease that you can't get rid of. Getting a lung transplant is kind of like pushing a reset button. I'll have good lungs for awhile but my CF will make it's way back into them.

  But anyways, here's the post you all have been waiting for!

    California day 1 (Monday the 11th): My mom and I flew out of Portland at 4:30 pm. And we got to San Jose at 6:15 ish. All of the arrangements for this trip was made by a transplant coordinator. And we were told that we had transportation from the airport to the hotel and from the hotel to the hospital. Well when we arrived at the San Jose airport my mom called the hotel to ask when the next shuttle to the hotel was. And apparently the shuttle only picks people up from the airport if they are within five miles of the hotel...and we were 15 miles away from the hotel...leaving us stranded. We were stuck at the airport for a good three hours after our flight had landed. After driving an hour and a half my best friend Melissa came to our rescue and picked us up!  Checked into our hotel and asked about what time the shuttle could take us to the hospital in the morning for my appointment and we had to be there at 9:30am. Well the only shuttle that we could get on was leaving the hotel at 9:30, so we had to take it. We had also arranged for a shuttle back from the hospital at 5 pm.  
Top left: Me on the way to our first appointment at Stanford!
Bottom left: My Stanford ID card!
Top right: Southwest logo.
Bottom right: My momma and I on the plane!

    Stanford day 1 (Tuesday the 12th, one month until my birthday): My first day at Stanford was a hectic one! We checked in and I got my "Stanford I.D." then we were off to my first appointment. First appointment of the day; was a meeting with a social worker. All we did was sit and talk about what's going on in my life. It was basically just seeing if I'm in the right frame of mind for a transplant. Second appointment of the day; was with the transplant nurse coordinator. We sat down and we had to watch a power point about the risk, complications, and what to expect (before and after). It was very informative. In between this appointment and my third appointment, I went and got an xray done that they needed in order for them to measure what size lungs I need. My third and final appointment; was PFTs. Just the typical PFT appointment. I had to blow into this machine a bunch of different ways. My PFTs were 21% which is kind of where I've been hangin around. I also had to do a six minute walk. Basically I just walk up and a down a hallway for six minute. They also want to do something called and AGB (artery blood gas) which requires them to stick a long needle into the artery in my wrist. It's complete torture!!!!! I let the RT (guy doing my pfts) attempt to get it because I didn't wanna seem "uncompliant" but he of course missed and hit all my nerves in the process. And didn't end up getting it. But turns out I didn't actually need one since I had just had one done back in December. After my appointments my mom and I went back to our hotel and ordered some room service! Word of advice: DON'T order room service because it's expensive and you don't even get that much food!!!
$25 dollars later....

    Stanford day 2 (Wednesday the 13th): Our second day at Stanford was the most anticipated one. It was suppose to hopefully be the one that we found out whether or not I get put on the list or not. And even though we wouldn't have a definite answer for another week, we were told we would have a pretty good idea about what would happen. So we got to the hospital and we first met with the nurse transplant coordinator, who we had met the day before. Then we met with a nurse practitioner, who was a little odd and was very much so appalled by the fact I only did my vest for 10 minutes at a time, when I guess it's suppose to be done for at least 20 minutes at a time... No one filled me in on that. The last person we met with was the most important, the head of transplant doctor! He was absolutely amazing!!! And gave me two pieces of news that I've been dying to hear. First; even after transplant I can have/carry my own children. For those of you who know me, know that being a mom is one of the only things I want to be in life. And second; he gave me a choice to wait two months to be listed and just kind of see where I am then. Or get listed now and be put low on the list, but if something changes with me health wise, I'm already on it. He said that his preference was to list me now because I have declined so quickly but it was up to me. And that my wait will be at least 6-12 months. Well, I of course said list me now!!! So as of right now I am unofficially the newest member of the transplant list!!!!!!!!!!! The team meets every monday and since this monday is damn holiday, we have to wait tell the following monday to hear back. But it's 98% official that I will be listed :)
Picture on the left: Getting labs done for transplant. 
Top picture: The entrance to the magical place I will get new lungs!
Bottom picture: Getting my ABG done :(

    California day 4 (Thursday the 14th, final day/valentines day): This day was a LONG one. Since the shuttle from our hotel didn't go to the airport, my friend melissa stayed with my mom and I on wednesday night so she could take us to the airport this day. Unfortunately, melissa had to work at 1pm this day and considering it takes her at least an hour and a half to get back home. She had to drop off my mom and I at the airport at 11..our flight was at 4:15 pm.. But my mom and I were just happy she was able to take us! It was very much so appreciated  So, thank you melissa :) Our flight home was good, short, smooth, and easy!! And I must say, it is SOOOOO good to be home!!
My valentine <3

    So there it is, the post you have all been waiting for! I am on the transplant list!! It's so crazy to think about that!! But with that being said, I am going to be doing some fundraising for all of the expenses my family will have, every little bit helps. I am still selling my bracelets. $3 each!!! Let me know if you're interested in purchasing some!! Thank you all for your love and support! <3

    One more thing, I want to take a second to thank my mom for everything she has and is doing for me. If I didn't have my mom by my side through all of this, it wouldn't be possible. I will never be able to thank her enough for what she's doing for me. I love you mom, you're my hero. Thank you for being the most amazing person in my life and not to mention my best friend <3 

Prayers and good thoughts are very much so appreciated <3

- Amanda :)