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 :)

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 :)

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 :)

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?

Register here: http://www.organdonor.gov/becomingdonor/stateregistries.html

Prayers and good thoughts are always welcome and appreciated <3

- Amanda :)

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 :) 

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 :)