tag:blogger.com,1999:blog-13558122706744462422024-03-05T19:51:42.579-08:00Real Heroes Become AngelsMy adventure through life, love, and new lungs!Real Heroes Become Angelshttp://www.blogger.com/profile/16548913655959783065noreply@blogger.comBlogger70125tag:blogger.com,1999:blog-1355812270674446242.post-24938287617360588552014-01-15T11:36:00.002-08:002014-01-15T11:36:57.144-08:00Sorry this update has come so late. Amanda received her new lungs January 12. She is still in ICY but doing well. We have been posting all the updates on her Facebook page called, Prayers For Amanda Sue.Real Heroes Become Angelshttp://www.blogger.com/profile/16548913655959783065noreply@blogger.com0tag:blogger.com,1999:blog-1355812270674446242.post-31492396084872260192013-11-17T16:10:00.003-08:002013-11-17T16:10:28.818-08:00Stanford trip 11.13<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">Heeeyyyy!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"> 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. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"> 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 <b>21%!!!!!</b> 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!!!! </span><br />
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<b><span style="font-family: Trebuchet MS, sans-serif;">Just our typical "reunited with my best friend" picture <3</span></b></div>
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<b><span style="font-family: Trebuchet MS, sans-serif;">Two very important girls in my life!</span></b></div>
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<b><span style="font-family: Trebuchet MS, sans-serif;">My lovely seeeester!!!!</span></b></div>
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<span style="font-family: Trebuchet MS, sans-serif;"> 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 :)</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Good thoughts and prayers are always welcomed and appreciated!!!! <3</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">- Amanda :)</span>Real Heroes Become Angelshttp://www.blogger.com/profile/16548913655959783065noreply@blogger.com2tag:blogger.com,1999:blog-1355812270674446242.post-25640938847052817002013-11-04T19:59:00.003-08:002013-11-04T20:03:06.737-08:00It's been way to long since I last posted!<br />
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<span style="font-family: Trebuchet MS, sans-serif;"> Heeeeyyyy everyone, </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"> 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. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"> 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!! </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"> 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<b> honest </b>opinion, I think it's from a broken heart, so allow me to say thanks to my ex who broke my heart...literally. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"> 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. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"> 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. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Prayers and good thoughts are always welcome and VERY appreciated! Thank you for reading. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">P.S I have also created a Go-Fund-Me account. Please share and/or donate! Anything and everything is appreciated! </span><br />
<a href="http://www.gofundme.com/4bztkw">http://www.gofundme.com/4bztkw</a><br />
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<span style="font-family: Trebuchet MS, sans-serif;">-Amanda :)</span><br />
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<br />Real Heroes Become Angelshttp://www.blogger.com/profile/16548913655959783065noreply@blogger.com1tag:blogger.com,1999:blog-1355812270674446242.post-19700579915928208362013-06-06T22:53:00.003-07:002013-06-06T22:53:25.759-07:00My california adventure! (Part 2 - Best Friend Bonding)<div class="separator" style="clear: both; text-align: center;">
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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!<br />
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<b>My tattoos <3</b></div>
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<b> </b>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 :) </div>
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<b>Me and Melissa on our way to the beach!</b></div>
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<b>Selfie on the way to the beach!!!!</b></div>
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<b>Me, Kellie (melissas roommate) and Melissa <3</b></div>
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<b>Stinson Beach <3</b></div>
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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<br />
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<b>Last family dinner before I left!</b></div>
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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 :)</div>
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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! </div>
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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 <a href="https://www.facebook.com/pages/Prayers-for-Amanda-Sue/540950289248971?fref=ts">https://www.facebook.com/pages/Prayers-for-Amanda-Sue/540950289248971?fref=ts</a></div>
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- Amanda :)Real Heroes Become Angelshttp://www.blogger.com/profile/16548913655959783065noreply@blogger.com1tag:blogger.com,1999:blog-1355812270674446242.post-62952788936216622592013-06-03T18:53:00.001-07:002013-06-03T18:53:12.860-07:00My california adventure! (Part 1 - Stanford)<br />
Hey hey hey!!<br />
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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!<br />
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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.<br />
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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 <b>22</b> 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.<br />
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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!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjebw4sZ4QT2Y_8vhLEFqjDP8FJK-gpdx39yC5AmXHj_mNsRfrDGxL1MuBoOtd8M2jHsoytagebedVOX22J8fKO0RgbMSx5gq9ARisK_b_HVORbfq6rB3uErmy5ufMVVRZVfhaYLmPUAA09/s1600/photo+(66).JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjebw4sZ4QT2Y_8vhLEFqjDP8FJK-gpdx39yC5AmXHj_mNsRfrDGxL1MuBoOtd8M2jHsoytagebedVOX22J8fKO0RgbMSx5gq9ARisK_b_HVORbfq6rB3uErmy5ufMVVRZVfhaYLmPUAA09/s1600/photo+(66).JPG" height="320" width="240" /></a></div>
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<b>They all smelled horribly!!!!</b></div>
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<b>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! </b><br />
<a href="https://www.facebook.com/pages/Prayers-for-Amanda-Sue/540950289248971?fref=ts">https://www.facebook.com/pages/Prayers-for-Amanda-Sue/540950289248971?fref=ts</a><br />
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- Amanda :)Real Heroes Become Angelshttp://www.blogger.com/profile/16548913655959783065noreply@blogger.com0tag:blogger.com,1999:blog-1355812270674446242.post-16292558089887859142013-05-07T18:23:00.001-07:002013-05-07T18:38:02.948-07:00It's been awhile!<br />
Hey!<br />
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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 - <a href="https://www.facebook.com/photo.php?v=623916517637027">https://www.facebook.com/photo.php?v=623916517637027</a> 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. <b><span style="font-size: large;">THANK YOU!!!! </span></b>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<b> raised $2,000!!!!!</b><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU8Ehc1UvC9IBPF8Zffd5ydCJ3FjT1SxquLld3Uf8XdgZUJObYw2HqwKmzTLvWloI088xP2PZuM3wDOPM20xtxKuLEZQ5rUZPAtRDuEYA8nQDyimpSOEWDBwdRo08WibiPjty2ZNos5_iY/s1600/photo.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU8Ehc1UvC9IBPF8Zffd5ydCJ3FjT1SxquLld3Uf8XdgZUJObYw2HqwKmzTLvWloI088xP2PZuM3wDOPM20xtxKuLEZQ5rUZPAtRDuEYA8nQDyimpSOEWDBwdRo08WibiPjty2ZNos5_iY/s1600/photo.JPG" width="320" /></a></div>
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<b>The table full of the raffle prizes!</b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9KRSXtL67Z7kteJn-DzygBgeY4HsnquwBHZ4vv-Bs4DUa5zYV7-hKWrVSFHA41JYxxrzQVY0mhYFxPk8-6fjEf5ikWHnc04oZAesdDMSLih-9AJYew3SS2pe1RWj0XHhYaDmPPGBCph4B/s1600/923502_10200910179097277_56480249_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9KRSXtL67Z7kteJn-DzygBgeY4HsnquwBHZ4vv-Bs4DUa5zYV7-hKWrVSFHA41JYxxrzQVY0mhYFxPk8-6fjEf5ikWHnc04oZAesdDMSLih-9AJYew3SS2pe1RWj0XHhYaDmPPGBCph4B/s1600/923502_10200910179097277_56480249_n.jpg" width="240" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLf6BtUTOro89WCG2tlfgi0tm1z0L-k47l_iX4ND99t-1_K6wNHds41vnicGOB4g8g4f1_EHEmQ1IXex9VJ2O6BLpV6nO9k9AqAq6w6_DwgOqwNOZZPcFJYfNLh_usNXaXT5h7x8BAWi0h/s1600/912370_10201157894088608_165858121_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLf6BtUTOro89WCG2tlfgi0tm1z0L-k47l_iX4ND99t-1_K6wNHds41vnicGOB4g8g4f1_EHEmQ1IXex9VJ2O6BLpV6nO9k9AqAq6w6_DwgOqwNOZZPcFJYfNLh_usNXaXT5h7x8BAWi0h/s1600/912370_10201157894088608_165858121_n.jpg" width="320" /></a></div>
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<b>Hot Dogs!!!!</b></div>
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<b>Mimosas, Chocolate Covered Strawberries and Cookies!</b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4-n0cCNjeJmCS-poslrt-eT2j-IqoZAZRst6jUMM3ARZvHNoCD-T8WMeeY9s2qfRezDMJgY-jhzuDoWZdFEX75AiXM2KsX46dRQD3JMzHVI1-u5Kkuzu-BbOmnpq9qZ4fZ0DewvO9wOUd/s1600/941562_10151572486129626_1026084224_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4-n0cCNjeJmCS-poslrt-eT2j-IqoZAZRst6jUMM3ARZvHNoCD-T8WMeeY9s2qfRezDMJgY-jhzuDoWZdFEX75AiXM2KsX46dRQD3JMzHVI1-u5Kkuzu-BbOmnpq9qZ4fZ0DewvO9wOUd/s1600/941562_10151572486129626_1026084224_n.jpg" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiy6Dgq4YUppdX3kymmS20AVw8DnBAGFj6FTfksF7oWXSLQm0_BEaaAahbJEShVzsIbp8e_-uhecozao0BaBKy8Hipu-swP0Pif4n1fBwFU10uefHvHgl67ktJRcApArKzk94qxDODMn_Ox/s1600/photo+%25281%2529.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiy6Dgq4YUppdX3kymmS20AVw8DnBAGFj6FTfksF7oWXSLQm0_BEaaAahbJEShVzsIbp8e_-uhecozao0BaBKy8Hipu-swP0Pif4n1fBwFU10uefHvHgl67ktJRcApArKzk94qxDODMn_Ox/s1600/photo+%25281%2529.JPG" width="240" /></a></div>
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<b>Face paintings that were done :) so much fun!</b></div>
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<b>Katrina, she curled my hair that day!! </b></div>
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<b>All of the wonderful hair stylist and barbers that participated that day :)</b></div>
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<b>THANK YOU ALL!!!!!</b></div>
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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<b> SOOOO</b> 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 :)<br />
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<b>Becca wanted to paint my toes! I'm one spoiled patient <3</b></div>
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One last thing, seeing as how it is May, which means<b> CF awareness</b> 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!<br />
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<b>How CF happens!</b></div>
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<b><span style="font-size: large;">How to donate to me and my family!</span></b><br />
1. You can go to and US Bank and make a deposit into my Real Heroes Become Angels bank account.<br />
2. Donate through paypal! Copy and post the link below :)<br />
<span style="background-color: white; font-family: 'Trebuchet MS', sans-serif; font-size: 13px; line-height: 18px;">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</span><br />
<span style="background-color: white; font-family: 'Trebuchet MS', sans-serif; font-size: 13px; line-height: 18px;"><br /></span>
<span style="background-color: white;"><span style="font-family: Trebuchet MS, sans-serif; font-size: x-small;"><span style="line-height: 18px;">Thank you all for your love, care, and support! Prayers and good thoughts are always welcome and very much appreciated. <3</span></span></span><br />
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<span style="background-color: white; font-family: 'Trebuchet MS', sans-serif; font-size: 13px; line-height: 18px;">- Amanda :)</span>Real Heroes Become Angelshttp://www.blogger.com/profile/16548913655959783065noreply@blogger.com0tag:blogger.com,1999:blog-1355812270674446242.post-83965618087519956212013-04-11T17:54:00.003-07:002013-04-18T18:15:25.531-07:00Fundraisers, bank information, and paypal!<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">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!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><u>Fundraising Events</u></span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><b>Monday, April 29th 2013</b> - What: Cut-A-Thon and Raffle</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"> When: Starts at 10 A.M.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"> Where: Strut Salon 1909 NE MLK Jr. Blvd. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;"> Portland, Oregon 97212</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b>Details:</b> 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. <b>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!</b></span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><u>Fundraisers</u></span><br />
<span style="font-family: Trebuchet MS, sans-serif;">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)!</span><br />
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<b><span style="font-family: Trebuchet MS, sans-serif;">Cost: $3 dollars each</span></b><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b>Email: </b>realheroesbecomeangels@yahoo.com</span><br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;"><u>Bank Accounts and Paypal</u></span><br />
<span style="font-family: Trebuchet MS, sans-serif;">I have a donation bank account set up for people to make donations if they would like to. You can go into <u>ANY</u> <b>US Bank </b>and make a deposit into the 'Real Heroes Become Angels' account.</span><br />
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<b><span style="font-family: Trebuchet MS, sans-serif;">OR</span></b><br />
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<span style="font-family: Trebuchet MS, sans-serif;">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!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">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</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">-Amanda :)</span>Real Heroes Become Angelshttp://www.blogger.com/profile/16548913655959783065noreply@blogger.com0tag:blogger.com,1999:blog-1355812270674446242.post-79561272058374186272013-04-11T17:53:00.001-07:002013-04-11T17:54:50.312-07:00Just an update and some good news!<br />
<span style="font-family: Trebuchet MS, sans-serif;">Hey everyone!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"> 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.</span><br />
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<b><span style="font-family: Trebuchet MS, sans-serif;">Me IV free!!!!! :)</span></b></div>
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<b><span style="font-family: Trebuchet MS, sans-serif;">Which one do you prefer?</span></b></div>
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<b><span style="font-family: Trebuchet MS, sans-serif;">Register here:</span> </b><a href="http://www.organdonor.gov/becomingdonor/stateregistries.html">http://www.organdonor.gov/becomingdonor/stateregistries.html</a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Prayers and good thoughts are always welcome and appreciated <3</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">- Amanda :)</span>Real Heroes Become Angelshttp://www.blogger.com/profile/16548913655959783065noreply@blogger.com3tag:blogger.com,1999:blog-1355812270674446242.post-16327213598279896482013-03-26T15:12:00.001-07:002013-03-26T15:12:35.192-07:00Being the odd one out<br />
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<span style="font-family: Trebuchet MS, sans-serif;"> 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. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"> 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. </span></div>
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<b><span style="font-family: Trebuchet MS, sans-serif;">My friends!</span></b></div>
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<b><span style="font-family: Trebuchet MS, sans-serif;">Jen, Me, Juli, Bree, Alexa, and Jenna :)</span></b></div>
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<span style="font-family: Trebuchet MS, sans-serif;"> 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</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">-Amanda :) </span></div>
Real Heroes Become Angelshttp://www.blogger.com/profile/16548913655959783065noreply@blogger.com1tag:blogger.com,1999:blog-1355812270674446242.post-79744501828602480762013-03-20T23:09:00.003-07:002013-03-20T23:24:04.289-07:00Learning to walk again<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">Hey everyone,</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"> 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. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b>Top picture: The thing I have to sleep with on my finger.</b></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><b>Bottom picture: The machine it's connected to.</b></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><b>All the oxygen tanks I was given today..So many of them!!!</b></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><b>Left picture: My main oxygen machine, I use at home.</b></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><b>Right picture: Me after they set up my machine. It feels amazing to breathe a little better! <3</b></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"> 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). </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><b>The bracelets I'm selling!!!! $3 dollars each :)</b></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">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</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">-Amanda :)</span></div>
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Real Heroes Become Angelshttp://www.blogger.com/profile/16548913655959783065noreply@blogger.com1tag:blogger.com,1999:blog-1355812270674446242.post-90292044945801941982013-03-14T23:17:00.001-07:002013-03-14T23:17:05.772-07:00My "dry run" was not fun but I had a good birthday!<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;"><b>Sorry this is gonna be such a long post. But it was a LOOONNGGG 24 hours, so just bare with me!!!</b></span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;"> 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 <b>8 DAYS!!!</b> 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.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"> 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!</span><br />
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<b><span style="font-family: Trebuchet MS, sans-serif;">The air ambulance that took us to california</span></b></div>
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<span style="font-family: Trebuchet MS, sans-serif;"> <b>Me trying to "sleep" on the flight down there.</b></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"> 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. </span></div>
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<b><span style="font-family: Trebuchet MS, sans-serif;">Last minute kisses from my mom and mel before I left!</span></b></div>
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<b><span style="font-family: Trebuchet MS, sans-serif;">People let me tell you about my best friend <3</span></b></div>
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<span style="font-family: Trebuchet MS, sans-serif;"> 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! </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"> 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. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"> 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! </span><br />
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<b><span style="font-family: Trebuchet MS, sans-serif;">View on the flight home</span></b></div>
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<span style="font-family: Trebuchet MS, sans-serif;"> 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! :)</span></div>
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<b><span style="font-family: Trebuchet MS, sans-serif;">On a happier note!!! My birthday was on tuesday!!!</span></b></div>
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<span style="font-family: Trebuchet MS, sans-serif;"> 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 :)</span></div>
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<b><span style="font-family: Trebuchet MS, sans-serif;">Top picture: All of us girls. Juli, Alli, Me, and Bree!</span></b></div>
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<b><span style="font-family: Trebuchet MS, sans-serif;">Bottom pictures: Candy and flowers they got me :)</span></b></div>
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<span style="font-family: Trebuchet MS, sans-serif;"> <b>Top picture: Bracelet Travis got me.</b></span></div>
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<b><span style="font-family: Trebuchet MS, sans-serif;">Bottom left: A framed picture of him and I</span></b></div>
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<b><span style="font-family: Trebuchet MS, sans-serif;">Middle picture: A picture he drew for me!</span></b></div>
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<b><span style="font-family: Trebuchet MS, sans-serif;">Last picture: Him and I at my birthday dinner :)</span></b></div>
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<b><span style="font-family: Trebuchet MS, sans-serif;">A ring my mommy got me for my birthday <3</span></b></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Thank you all for your love and support! Prayers and good thoughts are very much so welcome and appreciated. I love you all <3</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">- Amanda :) </span></div>
Real Heroes Become Angelshttp://www.blogger.com/profile/16548913655959783065noreply@blogger.com4tag:blogger.com,1999:blog-1355812270674446242.post-76986489834119077282013-03-09T03:10:00.001-08:002013-03-09T03:10:41.932-08:00No 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. <br />
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. <br />
Real Heroes Become Angelshttp://www.blogger.com/profile/16548913655959783065noreply@blogger.com1tag:blogger.com,1999:blog-1355812270674446242.post-79569636471228343862013-03-04T21:36:00.001-08:002013-03-04T21:36:04.962-08:00I'm number 35!<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">Hey everyone!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"> I got some amazing news the other day and as of Thursday, February 28th at 11:52 a.m <b>I am OFFICIALLY on the magical list to getting new lungs! </b>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.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"> 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)!! </span><br />
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<b><span style="font-family: Trebuchet MS, sans-serif;">Hospital stay boredom!</span></b></div>
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<span style="font-family: Trebuchet MS, sans-serif;"> 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!! :)</span></div>
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<b><span style="font-family: Trebuchet MS, sans-serif;">Liam!! The right picture is my favorite because I feel like he's saying</span></b></div>
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<b><span style="font-family: Trebuchet MS, sans-serif;">"come at me bro" :) hahahaha he's so dang cute!</span></b></div>
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<b><span style="font-family: Trebuchet MS, sans-serif;">Alma and I! We were port accessed/IV cyster twins :)</span></b></div>
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<b><span style="font-family: Trebuchet MS, sans-serif;">AAA Cysters! They came to me for our weekly date!</span></b></div>
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<b><span style="font-family: Trebuchet MS, sans-serif;">Addie, Me, and Alma <3</span></b></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I also got some very beautiful flowers while I was there! </span></div>
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<b><span style="font-family: Trebuchet MS, sans-serif;">Top left is from: Sue, Boo, and Johnny</span></b></div>
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<b><span style="font-family: Trebuchet MS, sans-serif;">Bottom left is from: Travis</span></b></div>
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<b><span style="font-family: Trebuchet MS, sans-serif;">Top right is from: Sam, Jessica and Liam</span></b></div>
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<b><span style="font-family: Trebuchet MS, sans-serif;">Bottom right is from: Addie and Aaron</span></b></div>
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<b><span style="font-family: Trebuchet MS, sans-serif;">Thanks guys <3</span></b></div>
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<span style="font-family: Trebuchet MS, sans-serif;"> 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: <b><span style="color: red;">WARNING:</span></b> If you have an issue with needles, <b>DON'T WATCH!!!! </b></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"> 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! </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">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! </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">- Amanda :)</span>Real Heroes Become Angelshttp://www.blogger.com/profile/16548913655959783065noreply@blogger.com1tag:blogger.com,1999:blog-1355812270674446242.post-63201923632233820952013-02-22T22:11:00.002-08:002013-02-22T22:11:24.089-08:00Left behind: I just need to vent<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;"> 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. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I just needed to vent. Thanks for reading. Prayers are very much so needed right now. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">- Amanda</span>Real Heroes Become Angelshttp://www.blogger.com/profile/16548913655959783065noreply@blogger.com9tag:blogger.com,1999:blog-1355812270674446242.post-36524055182782377682013-02-16T15:10:00.004-08:002013-02-16T15:10:54.644-08:00Stanford!!!!!<br />
Hey everyone!<br />
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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.<br />
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But anyways, here's the post you all have been waiting for!<br />
<b><br /></b><b> California day 1 (Monday the 11th): </b>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.<b> </b><br />
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<b>Top left: Me on the way to our first appointment at Stanford!</b></div>
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<b>Bottom left: My Stanford ID card!</b></div>
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<b>Top right: Southwest logo.</b></div>
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<b>Bottom right: My momma and I on the plane!</b></div>
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<b> Stanford day 1 (Tuesday the 12th, one month until my birthday): </b>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!!!<br />
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<b>$25 dollars later....</b></div>
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<b> Stanford day 2 (Wednesday the 13th): </b>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<b> I am</b> unofficially the <b>newest member of the transplant list!!!!!!!!!!!</b> 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 :)</div>
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<b>Picture on the left: Getting labs done for transplant. </b></div>
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<b>Top picture: The entrance to the magical place I will get new lungs!</b></div>
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<b>Bottom picture: Getting my ABG done :(</b></div>
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<b> California day 4 (Thursday the 14th, final day/valentines day): </b>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!!</div>
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<b><span style="color: red;">My valentine <3</span></b></div>
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So there it is, the post you have all been waiting for! <span style="font-size: large; font-weight: bold;">I am on the transplant list!! </span>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</div>
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<b> 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 </b></div>
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Prayers and good thoughts are very much so appreciated <3</div>
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- Amanda :)</div>
Real Heroes Become Angelshttp://www.blogger.com/profile/16548913655959783065noreply@blogger.com2tag:blogger.com,1999:blog-1355812270674446242.post-58589166221419102632013-02-04T16:21:00.001-08:002013-02-04T16:21:34.543-08:00Update: Port Problems<br />
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Just an update about what happened with my port. Saturday; my mom and I got up and went and had an X-ray done of my chest to see if my port had moved out of place again. Thankfully it hadn't, which meant to procedure to fix it!!!! We waited around for about a half hour to get a call from my doctor telling us where we had to go next. He called and said since the nurse treatment room where we were was closed on the weekends, we had to go all the way out to my doctors office. Which is about a half an hour away from where we were at the time. And once we got there the plan was to put TPA (tissue plasminogen activator, it breaks down blood clots) in and leave it there for a few hours. Well the question I had was; how did they plan on getting the TPA in my port if it wasn't flushing/working? Once, we got to our second stop of the day. We got taken back into a room right away, which was really nice considering sitting in a room full of sick people isn't good for me. Yes, I do wear a mask when I'm in a situation like that. But lets be honest, non of us like to wear those dang mask. Anyways, one of my favorite nurses was working which is always nice! The first thing he attempted to do was flush it and the last two days it hadn't been able to the flush which is why we were in this whole mess. So what happens when he goes to flush it?<b> IT WORKED!!!!!!!</b> Of course! But it was still a little tough to flush so I decided to have him put the TPA in just to be safe! When all was said and done, it was still kind of tough but I was just happy it was working again :) Kind of frustrating though at the same time, only because we spent so much freaking time trying to "fix" it. Five hours in the ER and then four hours doing stuff on saturday. But that's just life for ya! It works and that's all that matters :)<br />
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Also, we have officially started the countdown tell mom and I go to california to meet with the transplant team down there!!! In exactly ONE week we'll be down there!!!! We'll be there February 11th-14th. And my appointments are on the 12th and 13th. It's gonna be an exhausting couple of days that I'm both dreading and ready for. I will be posting as much as I can, but I imagine I'm gonna be pretty tired so it might just happen when I get home. I'm excited for many different reasons. First; I'm excited about the fact that all of my hard work and all of the hoops I've jumped through are finally going to be recognized. Second; I'm hopeful that I am gonna get listed!!! (Fingers crossed!!!) And last but not least; <b>I GET TO SEE MY BEST FRIEND!!!!!! </b><br />
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<b>I can't wait to see my best friend!!!!</b></div>
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Prayers and good thoughts are always welcome and appreciated <3</div>
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-Amanda :) </div>
Real Heroes Become Angelshttp://www.blogger.com/profile/16548913655959783065noreply@blogger.com1tag:blogger.com,1999:blog-1355812270674446242.post-78806274651338006202013-02-01T23:16:00.002-08:002013-02-01T23:16:21.163-08:00Port problems<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">Hey!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"> I've been sick for about a week and a half now. And after a week of fighting it, I finally caved and went in to the doctors. I got put on home IV on wednesday (the 30th). I went in, got my port accessed and everything was fine. It accessed really easily and flushed really well. Well today when I went to hook up to my antibiotic it wouldn't flush or give blood return. So I did all the little tricks I know, sitting in a different position laying down, putting my arm above my head, coughing, and nothing was working. So my mom called home infusion and they told us to go to the nurse treatment room. We got to the nurse treatment room around 4:30 ish, and we were informed that there was an hour and a half wait. But fortunately we got right in and didn't wait anymore than 10 minutes. The nurse tried all the same tricks I had done at home and nothing worked. So she decided to deaccess and reaccess me. Didn't do anything. The nurse called home infusion to see what the "next step" was. And I was then sent to sit in the ER waiting room...<b> Not a good place for a CF patient!! </b>Person and person my mom and I sat and watch everyone get pulled back into a room to get helped, even people that walked in after us.. My mom finally decided to page my doctor. My doctor then called around to figure out what was gonna happen with my port. My options were, wait to see someone (we were told we MIGHT get seen before 3am), get admitted (not something you want to attempt at 8 oclock at night) or stop IV antibiotics altogether. Well I'm sick, therefore I need to be on antibiotics. So we hang up with my doctor and wait some more. My doctor calls back about an hour later and says "Go ahead and leave. We're gonna have you to go urgent care in the morning to get an xray." Oh thanks doc, I've only been dealing with this/sitting in the ER for FIVE hours now.. When go to tell the lady at the front desk that we are leaving and we're just gonna deal with this tomorrow. And she goes "Oh okay, you guys were next." ARE YOU FREAKING KIDDING ME?!?!?!??!?!</span><br />
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<b><span style="font-family: Trebuchet MS, sans-serif;">Before, during, and after, getting my port accessed! Not fun!</span></b></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I was just so done with everything that I just wanted to leave. So after a LOOONNG day at the hospital, we left in the exact same position as when we first got there. Still have no idea what's wrong with my port. My guess is that I have once again coughed it out of place again. But we'll see what the xray says tomorrow.</span><br />
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<b><span style="font-family: Trebuchet MS, sans-serif;">My day started out really good, I woke up and went and got my nails done with on of my Cysters, Alma :)</span></b></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I'll post again tomorrow, when I know whats going on. Thoughts and prayers are very much so needed and appreciated <3 please, please, please!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">P.S. We finally opened up a bank account so people who want to make donations for my transplant can! Go to any US bank branch, the account is under my blog name Real Heroes Become Angels!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">-Amanda :)</span>Real Heroes Become Angelshttp://www.blogger.com/profile/16548913655959783065noreply@blogger.com0tag:blogger.com,1999:blog-1355812270674446242.post-40831658292405045992013-01-18T13:13:00.001-08:002013-01-18T13:13:29.085-08:00Exciting News!!!<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">Hey everyone!!!!!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">This is gonna be a short and sweet post! I just wanted to share with everyone that as of yesterday,<b> I got the invite from Stanford to come down and meet with the doctors!!</b> This is one of the many calls we have been waiting for, for a long time now. My appointments are February 12th and 13th. My mom and I fly down to california on February 11th and come back on the 14th. And I'm crossing my fingers that my best friend Melissa (who lives down in california) will be able to get time off work to be with me through all the craziness that's going to be happening down there! So what this exciting news means is that I'm going down to meet with all the transplant specialist and I'm most likely gonna be put through all the same testing I've already gone through. But at the end of the trip I will either be coming back with a pager, or I will be coming back with a "since you seem to be stable, we're not gonna list you". We are obviously hoping to come back with a pager!!!! If I do get my pager, it's just a waiting game from there! </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">So please, keep your fingers crossed that everything goes as smoothly as possible! This is what I've been working so hard for the last three months and I owe it all to my mom! If I wouldn't have had her with me the entire time, I wouldn't have been able to make it this far!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I will post a long update about whats been going on the last three or so weeks later. I'm taking some "me" time right now. I needed to get away and relax one last time before I get tethered to a pager! </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Prayers and good thoughts are always welcome and VERY much appreciated <3</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">- Amanda :)</span><br />
<br />Real Heroes Become Angelshttp://www.blogger.com/profile/16548913655959783065noreply@blogger.com2tag:blogger.com,1999:blog-1355812270674446242.post-50391155528936210942012-12-28T19:25:00.001-08:002012-12-28T19:25:30.894-08:00Good news, Holidays and Relaxation!!<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Hey everyone,</span><br />
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<span style="font-family: Verdana, sans-serif;"><b>Sorry this post is sooo delayed</b>. My schedule has been crazy the last week and a half. Especially with the holidays. I've been going, going, going and I'm so happy that all the craziness is finally slowing down! All I have left to do on my list I thought was never ending is my bone density test, scheduled on the 4th, and I have to complete my 24 hour urine catch... Which is proving to be a really big pain in the ass. Every time I pee I have to pee in this "hat" (picture below) then poor it into this jug (picture below) that I have to keep in my fridge, kind of gross but whatever.. lol. I'm really not feeling good today whatsoever. My left lung is absolutely killing me. It hurts to breathe. I'm trying to push out my hospital stay until after new years but I have a feeling that's not going to happen. Fingers crossed!!! I was told the other day (by mistake) that I'm a CF patient that complains a lot. I'm sorry if what I write and have to say comes off as me complaining because that's not how it is at all. When you spend as much time in the hospital as I have, you have to stick up for yourself if something isn't going the way it should be. So if you view my sticking up for myself as me being a "patient that complains a lot" then so be it. But I'm still alive because of it. </span><br />
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<b><span style="font-family: Verdana, sans-serif;">Left side: The "hat" I have to pee in.</span></b></div>
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<b><span style="font-family: Verdana, sans-serif;">Right side: The jug I have to keep my pee in.</span></b></div>
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<span style="font-family: Verdana, sans-serif;"><b>Monday the 17th:</b> Monday was a pretty uneventful day. Since I haven't been feeling well lately, I'm trying to take full advantage of doing nothing when I have free time. The only thing that happened on Monday was my mom and I had a conference with Stacy (transplant coordinator). She was just checking in to make sure everything was going okay. And to tell us that all my test I've been going through all look really good and are coming back perfectly! </span><br />
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<span style="font-family: Verdana, sans-serif;"><b>Tuesday the 18th:</b> Tuesday was the day I had been dreading ever since I started this transplant process. It was the day I have my G.I appointment. I get to the doctor and the first thing I ask for was an Ativan to help calm my nerves. It was kind of hard to get because the guy doing it was a butthole but I ultimately ended up getting one, which was really nice! He explained to me what he was gonna do, which terrified me even more. He was at first gonna stick this long tube that had ridges on it, up my nose and down into my stomach for 20 minutes. And then he was remove that one and put in a smaller one that was gonna be left there for 24 hours and I was gonna come back in the next day to have it removed. So he but this gel type stuff up my nose, and then tried putting the tube in. He didn't even get part way in before I started bawling, because it hurt like no other and I was scared. He tried doing it on both sides. Since that didn't work, he sprayed stuff up my nose to numb it. Then tried again. Same thing happened. He then looked up my nose and saw that my nose was almost to small for the tube. And he was gonna end up having to talk to my doctor to see what else they could do because he couldn't do it. So with tears running down my face, my mom, travis and I went home. I was SO happy to be out of there. </span><br />
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<span style="font-family: Verdana, sans-serif;"><b>Wednesday the 19th:</b> Wednesday was spent trying recoup from Tuesday!</span><br />
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<span style="font-family: Verdana, sans-serif;"><b>Thursday the 20th:</b> Thursday was a really busy day for me. In the morning I got a call from Stacy, saying that she saw the notes from the G.I people and that Stanford said that I don't need to have it done since the swallowing test I did before I left the hospital last time, came back perfect... I was pretty ecstatic to hear this!! But then again, kind of mad since I had already attempted to go through all that torture. Around 11:30 I had an appointment to see a liver specialist. Because the last few times I've been on IV my liver toxin levels have been coming back high. And my doctors thought I might need a new liver. The liver doctor said that he's not concerned whatsoever about my liver levels, and that I get to keep my liver!!! My next appointment was a lung rehab one. Nothing to exciting to report there. Then at 3:30 I had a 90 minute PFT (pulmonary function test). I had to do regular PFTs, blowing into a machine, five times. And the good news there was my PFTs are now 26% instead of the 20% they have been for a few months now! Which is AMAZING!!!!!! I was so excited!!! The next thing I had to do was sit in this box (picture below) and blow into this machine (same pft machine) a bunch of different ways, measuring the capacity of my lungs and what not. Then I had to do a 6 minute walk test, I had to walk up and down this hallway (picture below) as many times as I could in a 6 minute period. I had to walk just at my normal pace. I was happy that, that was my last appointment for the day. Because I was pretty tired once I was done with all of them. Later that night, I went to my friend Kaylins house to do gift exchange with her and Bree. We all ended up getting each other scarfs.. we all definitely think alike. Oh bree also got Kaylin and I a tire air pressure gauge. They also surprised me with an idea that they have come up with to help me raise money for my transplant process. (Keeping it a secret until it actually happens).</span><br />
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<b><span style="font-family: Verdana, sans-serif;">Me doing PFTs and the six minute walk</span></b></div>
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<span style="font-family: Verdana, sans-serif;"><b>Friday the 21st:</b> I had a hearing test on friday. I already have some hearing loss for being on antibiotics my whole life, especially when I was six. I had a bacteria that no CF patient had ever had. The doctors had no idea what was wrong with me. And finally figured it out, the bacteria is now referred to as MAC. It's super common now and can be successfully treated with certain antibiotics for a long period of time. But because I had that, the antibiotics affected my hearing. And I lost my high frequency hearing, I can't hear a thermometer beep. The results of my hearing test was good, everything is the same! </span><br />
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<span style="font-family: Verdana, sans-serif;"><b>Saturday the 22nd:</b> Was my little brothers 14th birthday!! I can't believe he's 14 already! It's so crazy to me. We didn't really do anything for his birthday because he didn't want to do anything. A week or so ago my mom ordered the rubber awareness bracelets you can get. And they finally came on saturday! We had ordered 200 of them, and I am currently down to only having 8 left!!! But don't worry, if you're interested in buying on we will have more sometime this week! They are<b> $3 dollars each!</b> All proceeds are going to be going to my family and I, for any and all expenses we will have during my transplant. Please, please, please, buy a bracelet and help me out,!!!! You can email me if you're interested, comment on this post, or send me a message on facebook! RealHeroesBecomeAngels@yahoo.com</span><br />
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<b><span style="font-family: Verdana, sans-serif;">These are the bracelets (front and back) that I'm selling to help raise money!</span></b></div>
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<span style="font-family: Verdana, sans-serif;"><b>Sunday the 23rd: </b>My friend Lauren and I went and got some peppermint hot chocolate from Starbucks, then went to Peacock Lane. It's a street in portland that decorates each house on the block in a bunch of Christmas lights. It's really cool. After sitting in a long never ending line of cars for over a half an hour, we finally got to see all the pretty lights! </span><br />
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<span style="font-family: Verdana, sans-serif;"><b>Monday the 24th:</b> Monday was Christmas Eve, and also the day my best friend (Melissa) flew in from california!!! I was very much so excited to see her!! I hadn't seen here since the beginning of september, I think it was. My family and I all went out to my aunt and uncles house for a christmas eve dinner!! It was nice :)</span><br />
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<span style="font-family: Verdana, sans-serif;"><b>Tuesday the 25th: </b><span style="color: red; font-weight: bold;"><span style="font-size: large;">Merry Christmas!!!!!!!</span> </span>I hope everyone had a wonderful christmas, I know I did! Most families wake up bright and early on christmas morning to do presents because they're all sooo excited...but not mine...my family didn't wake up tell 10:30 am. After we had our christmas my mom, sister, and I went over to my other aunts house for a little dinner. It was good! After that, I took my mom and sister home and went over to Melissa's moms house to do christmas with them. And then my mom, me, and melissa took christmas dinner up to my friend Mat, who has CF, who was in the hospital! It was a good christmas and it was even better because I got to see everyone I loved that day. Especially Mel <3</span><br />
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<b><span style="font-family: Verdana, sans-serif;">Me on Christmas day, wearing the scarf my grandma made me!!! <3</span></b></div>
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<b><span style="font-family: Verdana, sans-serif;">Melissa and I on Christmas day at her house!! <3</span></b></div>
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<span style="font-family: Verdana, sans-serif;"><b>Wednesday the 26th:</b> Wednesday was a day spent recovering from all the craziness of christmas!</span><br />
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<span style="font-family: Verdana, sans-serif;"><b>Thursday the 27th:</b> I had my rehab, it went really good! Nothing to exciting, just same routine. After rehab I went up to the hospital to pick up to the unsold bracelets and the money that mat had from selling some of the bracelets. Then I went and caught up with one of my other CF friends, Emily! And since thursday was melissa's last night here, her, lauren and I decided to have a girls night. We went to Shari's because I wanted some pie. There was an elderly couple at the table next to ours. And the wife was kind of teasing us that the husband was gonna steal our pies. Our waitress brings over our bill and then walks away with the elderly couple, and then walks about to our table and tells us that the elderly couple had bought our pies for us :) It's nice to know that there are still good people like that in this crazy world we live in. The next stop we made was to Dutch (Dutch Bros). Where we ended up getting free drinks! So since we were on a good luck streak we decided to buy some scratch its (lottery tickets). Spent $20 dollars on scratch its and won $13 dollars back...not exactly a win...</span><br />
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<span style="font-family: Verdana, sans-serif;"><b>Friday the 28th (today):</b> Was a sad day because I had to say good bye to melissa. I hate saying bye to her, it's always hard. But I should hopefully see her within the next month or so! It was nice getting to spend the week with her. Other than that, I haven't done anything today. I'm really not feeling that well. I'm slowly giving in to being sick. And finally completing my 24 hour urine catch today and will be turning it in tomorrow!!!! Then we just wait to hear back from Stanford.</span><br />
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<span style="font-family: Verdana, sans-serif;">I hope everyone had a wonderful Christmas and I hope everyone has a safe and fun New Years!! Yes, I realize this was the longest blog post in the world and I'm sorry. I won't let it happen again! :) <b>Don't forget to buy a bracelet! </b>So far I've raised roughly around $450 dollars. I can't even begin to say how grateful I am to have such a wonderful support system standing behind me. Thank you all so much. I love you all more than anything in the world. Thank you <3</span><br />
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<span style="font-family: Verdana, sans-serif;">Prayers and good thought are always welcomed and very much appreciated <3 </span><br />
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<span style="font-family: Verdana, sans-serif;">-Amanda :)</span>Real Heroes Become Angelshttp://www.blogger.com/profile/16548913655959783065noreply@blogger.com1tag:blogger.com,1999:blog-1355812270674446242.post-15237257322219943922012-12-17T20:37:00.003-08:002012-12-17T20:45:56.442-08:00Roller coaster week <span style="font-family: Verdana, sans-serif;">Hey everyone!</span><br />
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<span style="font-family: Verdana, sans-serif;"> This past week has been a crazy one to say the least. Lets start off with Sunday the 9th! My bothers football team won their second game which meant that they got to travel to Reno for their next set of games, which took place the weekend of the 15th and 16th. My brother, sister, dad, and one other family from gladstone, drove to Reno on Thursday night and will be returning Monday (tomorrow). Unfortunately my brothers team did not win the game that they needed to in order to continue to the finals in San Antonio, Texas. I couldn't be more proud of him though!! He did absolutely amazing!!! He played his little heart out being on this All Star team. And just being asked to play of this team was such an incredible opportunity for him and I hope that one day his future will benefit from this. Because after all, he his my retirement fund ;) lol.<b> Monday:</b> Was the day I had been looking forward to for the last two weeks! The day I came off of IV!!! I was so excited to be done with IV's, they get really old, really fast. I had a doctors appointment that day to see if I was ready to come off or not. I did PFT's and they were 20%, which is what they have been for awhile now, so it's good that they haven't dropped but bad because they haven't come up at all. My weight was also down as well, 103. I don't know what is going on with my weight lately. I've been going up and down and down and down some more. And I have no idea why. I'm doing everything I'm suppose to be doing and it makes it that much more frustrating to me. My doctors yell at me every time I lose a pound and I'm really getting sick of it. I know a lot of CFers read my blog, so if you guys have any tips/tricks to help gain weight, please share with me by leaving a comment below! Since I'm in the process of getting on the transplant list there's a ton of labs and test I have to get done. So before I got "de-accessed" (having my IV taken out of my chest, picture below) I had about 97% of my labs done, to save my arm a needle stick or two! They ended up taking 23 vials of blood from me (picture below). By the time they were done I was very light headed! After my appointment, my mom and I headed to Red Robin where 26 of our family members were waiting to celebrate my sister Ashley's 18th birthday!!!! It's crazy to me that my little sister is legally an adult. She can legally sign for that matching tattoo I want to get with her lol :) Unfortunately now that I've been off of IVs for a week now, I am sick yet again.... I swear my body is becoming dependent upon antibiotics. I always feel 100% better when I'm on them for the last few days and then a few days after I come off. But now, I'm right back to where I had originally started :( I'm so sick of being sick.. I have a feeling I will be back on antibiotics and in the hospital by new years eve. :(</span><br />
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<b><span style="font-family: Verdana, sans-serif;">Left; all 23 vials of blood they took from me.</span></b></div>
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<b><span style="font-family: Verdana, sans-serif;">Right; my port, IV free <3</span></b><br />
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<b><span style="font-family: Verdana, sans-serif;">A view from the end of the table of all my family at my sisters birthday! </span></b><br />
<b><span style="font-family: Verdana, sans-serif;">This isn't even everyone that was there! lol Poor waitresses..</span></b></div>
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<span style="font-family: Verdana, sans-serif;"> <b>Tuesday:</b> This is one of the days I've been dreading most with this whole process. It was procedure day. I had to have my right heart catheterization done. The nurse I had, I wanted to punch in the face. He treated me like I was five, talked to me like I was five, and asked the stupidest questions ever. And to top it all off I had to wear one of those oh so fashionable hospital gowns, which I HATE with a passion. The plan was for them to mildly sedate me so that I wasn't asleep but I was relaxed! Then they were gonna make a small incision into the artery in my neck, then they were gonna thread a tube down my vein to my heart, in my heart, and then in to the top of my lungs and what they were doing was measuring the pressures in those places. But because nothing ever goes as planned with me, they had to go in through my groin instead of my neck. Due to the fact that the doctor doing it thought it might interfere with where my port is. When they attempted to put in the little tube, they kept running into my vein when they needed to get to my artery. So they had to make not one but two incisions. And because they had to go in through my groin I had to stay at the hospital an extra three hours before I was aloud to move my leg. It's basically six days after I had that procedure done and I still can't walk because my leg is still severely bruised (Picture below). I was happy that I had my mom, my dad, my best friend Lauren, and Travis by my side holding my hand the entire time! I don't know how I would've done it without them!! On a side note, when I came out of the procedure I was shocked to hear about the shooting at Clackamas Town Center. But was revealed and thankful to hear that all of the family and friends I did have at the mall that day, did not get harmed. My heart goes out to the familys that did lose their loved ones on that tragic day. I am truly sorry. </span></div>
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<b><span style="font-family: Verdana, sans-serif;">Top left picture; my battle wound on wednesday morning. </span></b></div>
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<b><span style="font-family: Verdana, sans-serif;">Middle picture; me before my procedure.</span></b></div>
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<b><span style="font-family: Verdana, sans-serif;">Bottom picture; my battle wound again on friday.</span></b></div>
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<b><span style="font-family: Verdana, sans-serif;">Big picture on the right; my best friend Lauren who came with me on procedure day.</span></b></div>
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<b><span style="font-family: Verdana, sans-serif;">Top left: wednesday morning. Top right: thursday morning.</span></b></div>
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<b><span style="font-family: Verdana, sans-serif;">Bottom left: friday morning. Bottom right: sunday morning.</span></b></div>
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<span style="font-family: Verdana, sans-serif;"> <b>Wednesday:</b> I was suppose to have an appointment with my counselor but I wasn't really feeling like talking all that much and I couldn't walk because my leg hurt so badly. So I had my mom call and cancel it for me. I don't know if I want to go back to counselling or not because when I'm there I just have nothing to say to her. I'm the kind of person where I have to really like you in order for me to open up to you. And going to a councilor isn't helping me any, if anything when I'm there it's just frustrating me more. I might look in to finding someone different. Maybe one that specializes in chronic illnesses. I also found out on wednesday that one of my cysters (girl with CF) Breanna, who was 11 years old, gained her wings on monday. I was completely heartbroken when I found out, I had just started talking to her not to long ago and I hadn't got the chance to meet her or even get to know her for that matter. Whenever the CF community looses one of its members it's heartbreaking to all of us, whether we knew them or not. We all share a special bond with one another that no one else has. My heart goes out to Breannas family and friends. I'm sorry for your loss.</span></div>
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<span style="font-family: Verdana, sans-serif;"> <b> Thursday:</b> I feel like thursday went on forever! It was such a long/sad day. I went to a funeral with two of my friends. One of the girls we went to high school with lost her 17 month old son Caydn, very unexpectedly. And even though I wasn't ever very close to her, I still wanted to go and offer her my support. It was extremely heartbreaking. I can't even imagine what their families must be going through right now. I'm sorry for your loss Bri. RIP baby Caydn <3 Please help the family raise money to pay for this sweet babys memorial service. Anything helps! </span></div>
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<b><span style="font-family: Verdana, sans-serif;">Sweet baby Caydn</span></b></div>
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<span style="font-family: Verdana, sans-serif;"><b>Donate here -></b> http://www.gofundme.com/1ng6sg </span></div>
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<span style="font-family: Verdana, sans-serif;"> <b> Friday:</b> Was a sad and tragic day for our country. The shooting at Sandy Rook Elementary school is something that will never be forgotten. I will never understand how someone could take someone elses life, let alone lives of innocent children and teachers. It sickens me. Everyone who has been affected by this shooting, I am truly sorry for your loss and the pain you are going though. No one will ever understand why what happened, happened. My sliver lining that day was that I got to celebrate my friend Travis's 22nd birthday with him and his family! His mom made an awesome dinner, that was delicious!!! Then a little while later I went to the movies with his family, him, and a few of his friends. We went and saw the Hobbit. A movie I wasn't very excited to see by any means because I honestly have zero interest in the whole Lord of The Rings series. I found myself falling asleep really frequently, which I don't ever do while at a movie. Lol. </span></div>
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<span style="font-family: Verdana, sans-serif;"> This upcoming week is going to be another busy one, but I'm happy to say that after this week is complete I am done with 95% of my transplant testing!!!!! WOOOO!!!!! Tuesday (tomorrow): G.I. procedure. Wednesday: Take out GI prob. Thursday: Lung rehab and gift exchange with friends!!! Friday: NOTHING!!!! Saturday: My brothers 14th birthday! And then on monday the 24th, my best friend melissa will be here!!! I hope this week goes by fast! </span><br />
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<b><span style="font-family: Verdana, sans-serif;">Picture from my girls night a few weeks ago! </span></b></div>
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<b><span style="font-family: Verdana, sans-serif;">Me, Kaylin, Juli, and Bree :)</span></b></div>
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<span style="font-family: Verdana, sans-serif;"> Prayers and good thoughts are always welcome and very much so appreciated. And please send prayers to everyone who has suffered and lost so much this past week. My heart goes out to everyone who lost loved ones and friends. </span><br />
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<span style="font-family: Verdana, sans-serif;">-Amanda :)</span><br />
<br />Real Heroes Become Angelshttp://www.blogger.com/profile/16548913655959783065noreply@blogger.com0tag:blogger.com,1999:blog-1355812270674446242.post-36928955515501101042012-12-08T23:13:00.001-08:002012-12-08T23:16:29.790-08:00It's been a looonnngggg week<span style="font-family: Verdana, sans-serif;"><br /></span>
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<span style="font-family: Verdana, sans-serif;"> I'm sorry I haven't posted anything this week. I've been super super busy with appointment. Literally everyday this last week I've had a least one appointment! I'm so incredibly overwhelmed with appointments and procedures I have to go through, and long 'To do' list that I've been given. I came home on Monday, after a long long day at the hospital, since they thought it was necessary to make me go through all these last minute test before I got to go home. Tuesday, I had my lung rehab appointment, it was really nice to finally be back in there working out and building my lungs! Wednesday, I had a counselling appointment. And I received a call around 10:30 a.m. or so from Stacy, who is the transplant coordinator that will be helping with through this process. She called and gave me a huge list of things I needed to get done before my information can even be sent down to Stanford. Well..we were all kind of under the impression that it already had been because that's what my doctor had told me. At this point in time I am not very happy with my doctor because he has failed to tell me a lot of things and he's mislead me a lot. I'm just so over it. Anyways, Stacy told me that she had just finished putting in orders for me to see a bunch of specialist. Basically, every single specialist you can think of, I have to see. Every test/procedures you can think of, I have to go through.. She gave me a list of people I should be expecting calls from, this list consisted of; OBGYN, GI (gastroenterology), Dermatology (skin), Cardiology (heart) and someone would be calling me to schedule a bone density scan. And I also needed to get in to see the dentist. Within two hours of receiving her call every single one of these people called me to schedule an appointment. I made an appointment to see an OBGYN for the following day. Which happened to be thursday so I also had my lung rehab appointment that day. It was a horrible day, by the end of it, I was so exhausted!!!! Luckily thursday night, I had plans with a few of my girlfriends to have a girls night. Having something to take my mind off of being sick, even if it was just for a short while, it was still nice! Then on friday, I had an appointment to see cardiology for a pre-op (pre operation). I was so incredibly happy to have my mom and my best friend there with me to hold my hand. Even though nothing happened other than talking. But an appointment was scheduled for me to go in and have this procedure I have to have done, done. It will be on Tuesday. I will be given a light sedative, then they'll numb a part of the left side of my neck, make an incision thread a long tube down my vein into my heart and then into the top part of my lungs. What they are doing in measuring the pressures around my heart and my lungs. I'm not very excited whatsoever.. I'm actually kind of scared :( The other appointment I'm scared for is the GI one, that has been scheduled for the 18th. This procedure involves me having a long camera stuck down my throat for 20 minutes. Then putting a small tube down my nose all the way down into my stomach, to measure the acid levels in my stomach that's left there for 24 hours.. Yeah.. not happy about this shit.. But anyways here's my schedule for the upcoming week; Monday, CF doctors appointment. Tuesday, cardiology procedure. Wednesday, check up with non CF doctor and counselling appointment. Thursday; I have lung rehab. Friday, dermatology appointment. Not to mention there's two pages of labs I have to have done as well. My weeks are jam packed full of fun and exciting things... NOT!!!! Needless to say I am EXTREMELY overwhelmed with appointments right now. I don't think I could be doing this without my mama, she's been incredible during this whole crazy process! She handles all of my appointments for me. And it's a good thing she takes me to all of them, because I probably wouldn't go if she didn't! lol. </span><br />
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<b><span style="font-family: Verdana, sans-serif;">I found these on Instagram and thought they were funny! I know my fellow CFers will enjoy them!</span></b></div>
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<span style="font-family: Verdana, sans-serif;"> On a good note, all of my friends are returning home for the holidays and I couldn't be more excited about it!!!! I'm so happy to have all my friends back! Especially my best friend Lauren!! She's incredible, I don't know what I would do if I didn't have her by my side holding my hand, freaking out even more so than I do. Lol :) Lately, I've been having girl nights with a few of my friends from high school, who I've never really been close with so it's great to be hanging out with them!! :) I'm in the mist of making a couple of them scarfs for Christmas, so lets hope they turn out okay.. lol! And if not, they all better pretend that they like them!! This week, I also got to see one of my best CF friends, Mat. He came on wednesday night to crash at our house for the night. Because he's being admitted to the hospital on Monday and had plans to go to Corvallis for a few nights before hand and didn't wanna have to drive the whole way in one day. Cause it would've been close to a five hour drive. I like to write about random acts of kindness people show, so here's my story for the week. Since my cardiology appointment was scheduled for such a close date, I started to freak out a little bit so yesterday Lauren and I went and got our nails done. The lady that did our nails is my friends boyfriend, mom. Sitting with her, we got to talking about me being in the hospital and what not. When I went to pay her for my nails, she said that it was on her and not to worry about it :) I couldn't believe it! It was the most amazing gift, after the long week I had, had!! Thank you Sandra for what you did!!!! :) Also, tonight my 13 (almost 14) year old brother had his first Oregon All Star Football game, it was intense!! But they totally kicked butt and WON!!!! 20-7!!!! I couldn't be more proud of my little brother. He has another game tomorrow, that I will be at on the sidelines cheering as loud as my little lungs allow me to <3</span><br />
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<b><span style="font-family: Verdana, sans-serif;">My not so little brother, Austin <3</span></b></div>
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<span style="font-family: Verdana, sans-serif;"> I will update again, most likely on wednesday. But if not on wednesday then definitely at the end of the week. I'm scared and I feel like I'm breaking down, so prayers are welcome and very much so appreciated, especially these next few weeks. <3</span><br />
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<span style="font-family: Verdana, sans-serif;">- Amanda :)</span>Real Heroes Become Angelshttp://www.blogger.com/profile/16548913655959783065noreply@blogger.com2tag:blogger.com,1999:blog-1355812270674446242.post-22043323760060364532012-12-03T22:43:00.006-08:002012-12-03T22:43:58.432-08:00Finally Home!!!!!<div>
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<span style="font-family: Verdana, sans-serif;"><b> I'M FINALLY HOME!!!!!!!!!</b> I'm so incredibly happy that I got to come home today. After the day I had, I thought I would never get released. So to start my day off right, my nurse comes in at 8 this morning and tells me that I'm going down for a test in an hour... okay nurse. Mine and my moms first question is what does this test entail. My nurse goes and brings my mom these papers that tell us, I"m going down for a procedure that they have to mildly sedate me for and I have to have a camera shoved down my throat so they can look around inside my body. Uhhh WHAT?!?!?! Naturally, I start freaking out because first of all no one told me about this and second of all that's not how I wanted to be woke up. Now my mom and I start panicking, she calls my dad, who typically runs on no sleep and he has nights where he just drops and last night was one of those nights, so he wakes up rushes to the hospital. We're down in a random hallway just sitting, waiting for me to go back to get this procedure done. My dad shows up. Finally someone comes out and we ask them what exactly this procedure is, and she says she was gonna go and check and then come back and tell us...she never came back. When someone finally does come to get me, they take me and my parents into this x-ray lab, and turns out all I have to do is drink something... Thank you nurse for scaring the living shit out of me. (Picture below on the upper left side; the worm looking thing is the contrast I had to drink). After I finish this, we go back up to my room, where my nurse tells me I have yet ANOTHER test I have to do before I get to go home. Mind you, before I get to go home I have to have my port reaccessed and I have to meet with the home IV people (who apparently won't be there tell 3, it's around 11:30 at this point). To add something else on my plate, I have to have an IV put in my arm in order to do the scan for my lungs. Because using my port would mess with the quality of the picture.. The point of me having my port is so that I don't have to have any more IVs put in my arm. I go down for the scan, which went really well, all I had to do was lay there while this cool machine took pictures of my lungs. Turns out this scan was to see/measure how much blood flow my lungs are getting. If you look at the picture below, the one on the upper right side, shows that I don't have use of the top part of my right lung. After I finished this scan, I came back up to my room and my nurse comes in and tell me that she has to take labs from me before I get one of my antibiotics, which would've been fine and dandy, if it wasn't due at 5 pm. Which would've meant she was gonna take labs at 4:30 pm, it was 12:30... Yeah, no not happening. I call my mom and she calls home IV and they decided that I can leave after I get my port reaccessed and I don't have to have labs done today!!!! Well I get my port reaccessed and I'm waiting for my nurse to come give me my discharge papers...but no... she walks in with an antibiotic in her hand, that I apparently have to get before I leave. At this point in time, I'm just fed up with everything!! I'm pissed, I'm frustrated and I just want to go home. She starts my IV that's only suppose to take a half hour. Fifteen minutes in to it, I look up at my bag to see how much was left, only to discover that my nurse didn't undo the clamp to start it, so I've been sitting here for fifteen minutes for nothing... Thank you nurse for really pissing me off and messing with my day. All I wanted to do was go home.. I<b> finally</b> get released around 2:30 pm or so. And after the day I had, had at that point I didn't think I was ever gonna get out. By the time I left, I was just so done. I'm happy to be home, even though I have to be on IVs for the next week or so. Doing everything myself is so much better than being in the hospital!!!!! </span></div>
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<b><span style="font-family: Verdana, sans-serif;">Top left: The worm looking thing is the contrast I drank.</span></b></div>
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<b><span style="font-family: Verdana, sans-serif;">Top right: The blood flow throughout my lungs (notice there's none to my upper right side)</span></b></div>
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<b><span style="font-family: Verdana, sans-serif;">Bottom left: The IV they had to put in for my lung scan.</span></b></div>
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<b><span style="font-family: Verdana, sans-serif;">Bottom right: ME :)</span></b></div>
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<span style="font-family: Verdana, sans-serif;"> Due to my shitty day I had, on our way home my dad took me to dutch (Dutch Bros) to help with my day :) I love dutch!!!! It's delicious :) I'm so happy to be home and to be free. I'm anxious to get back into my normal routine. This week is full of appointments and fun. I have lung rehab tomorrow, counselling on wednesday and my friend Mat, who has CF, is coming to stay the night at my house. Because he lives in Pendleton and has a doctors appointment on Thursday in the morning and he doesn't want to have to wake up super early to drive four hours. On thursday, I have lung rehab again, then having a girls night that night to :) And on friday, I have an appointment to meet with a cardiologist, it's required for transplant. Crazy busy week I have. But I've decided that from now on I'm focusing on me and only me, at least for the time being. I have so much going on in my life, that I need to figure out. And that takes priority over everything and everyone. My health is my main focus. This new chapter I'm starting in my life is going to be a good one. And those who are important to me and those who love and care about me will be right by side during this new chapter. Thank you everyone for all your love, care, support, and for believing in me. It still amazes me how many people I really do have in my corner <3</span></div>
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<span style="font-family: Verdana, sans-serif;">Prayers and good thoughts are always welcome and appreciated <3 </span></div>
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<span style="font-family: Verdana, sans-serif;">-Amanda :)</span></div>
Real Heroes Become Angelshttp://www.blogger.com/profile/16548913655959783065noreply@blogger.com0tag:blogger.com,1999:blog-1355812270674446242.post-41369674693650142642012-12-02T23:15:00.005-08:002012-12-02T23:15:44.043-08:00Hospital Stay Day 7<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"> I've officially survived seven whole days in prison. But I must say I am very anxious to go home tomorrow! I can't wait to get out of here and be human again. I had to have a blood gas test done today. Which measures the amount of carbon dioxide I'm moving in and out of my body, to make sure nothing's wrong and I don't need oxygen. They do this test by sticking a long needle into the artery in my wrist. And let me tell you, it hurts like hell. Last time I was here, the person that did it had to do it twice because he missed the first time. But the second time wasn't any better because he missed the second time as well, but I wasn't about to let him do it again. So my doctor said it could wait tell I was here again. Everything went good today though, the girl that did it, got it on the first try and she numbed my wrist first, so it didn't hurt as bad. All of my levels came back fine!!! Which is one less thing I have to worry about. :) Other than that, today was pretty uneventful just like the last few days have been. The most exciting thing when you get to leave the hospital, other than getting to leave the hospital, is being able to take a decent shower when you get home!! And I know that all of my cysters (girls with CF) and fibros (boys with CF) know exactly what I'm talking about!!! Before I leave tomorrow I have to get my port reaccessed. When you're using your port for you IVs, when it's accessed, it has to be redone on a weekly basis. It sucks. That means that, they come take out the needle I have in it right now, kind of clean around it. Put numbing cream on it, wait a half hour to 45 minutes, they come back clean around the site again, then stick a needle back in it, and bandage it up, then wallah, all done :) It's not as bad as it sounds, but it does suck. And since I'm going home on IVs I have to have it done. </span><br />
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<span style="font-family: Verdana, sans-serif;"> The visitors I had today were my friend Adrienne, who has CF. Her friend Jessica, and jessicas cute little baby girl Kaydence!! She's so darn cute :) I love babbies, I hope one day I get the chance to have some of my own!! I'm finally starting to smile again. I think it's because I've accepted the fact that whatever's meant to be, will happen. And I'm finally focusing on myself, my health, and realizing that the right guy will come along some day. And he's gonna wanna stand by my side through anything and everything, when I do find that guy, I'm not gonna let him go because it takes a very incredible/amazing/strong person to take on someone with a life threatening disease. Who knows, maybe I've already found him and I just don't know it yet <3 </span><br />
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<b><span style="font-family: Verdana, sans-serif;">Little baby Kaydence <3</span></b></div>
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<span style="font-family: Verdana, sans-serif;"> I will post tomorrow at the end of the day, as usual!! Prayers and good thoughts are always welcome and very much so appreciated <3</span><br />
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<span style="font-family: Verdana, sans-serif;">-Amanda :)</span>Real Heroes Become Angelshttp://www.blogger.com/profile/16548913655959783065noreply@blogger.com0tag:blogger.com,1999:blog-1355812270674446242.post-72004262218407103112012-12-01T21:20:00.001-08:002012-12-01T21:22:04.860-08:00Hospital Stay Day 6<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"> Well it's the end of day six in the hospital. Not much happened today, but last night was quite eventful. Other than the fact that I gained a pound!!! Which makes me 105 pounds.. Only 15 away from my goal weight! Woo!! Last night I had the sweetest nurse ever. However, for the life of her, she could not find the right attachment to my night feed bag. She literally went back and forth four different times in order to find the right one. I felt so bad for her. After that finally all got figured out, my dad calls my mom and says my brother isn't doing well and that he needs to be seem. My brother has been sick for the last few days now with flu like systems. And last night his ear starting hurting him so badly that he was almost to tears. So my dad and sister came to the hospital and my mom met them down in the ER, mind you this was 11 at night. After everything was said and done and the doctor that saw my brother told my parents to just give him some sudafed and that he'd be fine, it was 3 in the morning. And while they are doing this, I was peacefully sleeping away in my not so comfy hospital bed. Lol. But he's getting better, this flu bug just kicked his butt for a few days. As for today though, it was a pretty boring day, just a lot of sitting around and watching tv...same old, same old. These last six days have been the longest six days of my life, or at least thats how it seems. At least I have my puppy up here with me now :) </span><br />
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<span style="font-family: Verdana, sans-serif;"> Every day I have had visitors, which I <b>love!</b> Today's visitors were my sister Brittany, her mom Roni, and my Aunt Wanda. It was really nice to see Brit and Roni because I hadn't seen them in what seems like forever, so it was good to see them. Then my auntie surprised my mom and I with a visit. And then came back again a little later with a delicious home cooked meal!! It was the best thing I've ate in six days!! :) Thank you guy for coming to see me, I really appreciate it. And it means the world to me!!! </span><br />
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<b><span style="font-family: Verdana, sans-serif;">One of my three favorite sisters, Brittany <3</span></b></div>
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<span style="font-family: Verdana, sans-serif;">I will post tomorrow and/or when something exciting happens! Prayers and good thoughts are welcomed and very much so appreciated <3</span></div>
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<span style="font-family: Verdana, sans-serif;">-Amanda :)</span></div>
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<br />Real Heroes Become Angelshttp://www.blogger.com/profile/16548913655959783065noreply@blogger.com0tag:blogger.com,1999:blog-1355812270674446242.post-28342545418055080552012-11-30T21:23:00.003-08:002012-11-30T21:23:39.654-08:00Hospital Stay Day 5<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"> Day five in the hospital, and despite all the wonderful visitors I've had since I've been here, I'm beyond bored. I wish I could say I was feeling better to go home but I'm not. I mean, I'm definitely feeling better than I was when I was first admitted, but I'm not where I need to be to go home. The word around the hospital is that hopefully I'll be out of here on Monday!!!! One of the reasons they aren't shoving me out the door is because my little brother is at home right now really sick with the flu. And going home and catching the flu, doesn't sound like a good time. Lol. Nothing medical exciting happened today, which I guess is a good thing! So for right now, we're just kind of going with the flow. When I do get to go home, I will be on home IV's which is a whole of a lot better than being stuck in here. The RT (Respiratory Therapist) I had today, isn't my favorite to begin with. And for one of my inhaled medicines you have to mix with saline. To mix it you have to use a needle. Well after my treatment was over, my sister pointed out that he had left the needle sitting on my little bedside table I have. Uhhh, that's a huge mistake on his part. How does he know, I wouldn't have like stabbed myself or something. I mean, I wouldn't have but someone else may have. I couldn't believe it. I most certainly said something to my nurse and the RT I had for my treatments tonight. I must say, I'm kind of nervous because it's the weekend and you know what weekends mean.... shitty nurses... yay... just what I want to deal with. Please, please, please keep your fingers crossed that nothing bad happens this weekend. And that everyone that comes into my room, makes it out alive :) lol. </span><br />
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<span style="font-family: Verdana, sans-serif;"> I had lots of visitors today, which is awesome!!! I got to see my dad and my sister, they brought me my favorite drink in the whole world. An extra sweet raspberry, peach, coconut rebel from Dutch Bros. Then I got a surprise visit from my friend Bree, who also brought me my favorite drink in the whole world :) So yes, I had two energy drinks today!!!! Which when I'm not locked up, having two a day is a very typical thing for me. I also got to see my friend Kaylin today!!! She just brightens my day because she's always so happy and upbeat! But most of my friends are :) It was really nice to see both of them today. I'm lucky to have such amazing friends. I cannot wait to have our girls night when I get out of here!!! It's for sure something I have to look forward to! </span><br />
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<span style="font-family: Verdana, sans-serif;"> Well it's definitely time to get some sleep, since I didn't sleep very well last night thanks to beeping machines..the joys of being in a hospital. Prayers and good thoughts are welcomed and appreciated <3 </span><br />
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<span style="font-family: Verdana, sans-serif;">- Amanda :)</span>Real Heroes Become Angelshttp://www.blogger.com/profile/16548913655959783065noreply@blogger.com0