Tuesday, March 26, 2013

Being the odd one out

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

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

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

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

-Amanda :) 

Wednesday, March 20, 2013

Learning to walk again

Hey everyone,

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

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

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

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

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

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

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

-Amanda :)

Thursday, March 14, 2013

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

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

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

The air ambulance that took us to california

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

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

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

People let me tell you about my best friend <3

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

View on the flight home

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

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

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

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

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

A ring my mommy got me for my birthday <3

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

- Amanda :) 

Saturday, March 9, 2013

No longer 35!!

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

Monday, March 4, 2013

I'm number 35!

Hey everyone!

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

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

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

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

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

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

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

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

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

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

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

- Amanda :)