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 :) 


  1. I'm sorry you didnt get your new lungs but at least you know now what you'll be going thru once you do get that call! I already have anxiety issues so my dr suggested that I'd probably have to see someone specifically for that once I get on a transplant list. hope you get them in a timely manner, xx.

    1. When I started the transplant process my doctors suggested that I start seeing like a social worker or a therapist and I didn't really see the point in it. Because first I hate getting to know/opening up to someone I don't know. Especially when I have so many Cysters and Fibros that I can talk to that do understand. But since I went through my "dry run" I totally understand why they want you to talk to someone, I highly recommend it now!!!!

      I hope I get my lungs soon but not to soon, because I am not ready to go through all that quite yet. But remember you can ALWAYS talk to me!! :)

  2. WOW!! Thank you for sharing this story Amanda! You are truly an inspiration beyond words cyster!!!!!!!!!!

    STAY STRONG! Your second shot is coming very soon

    1. Of course, thank you for reading/following my blog! It means the world to me!

      I'm trying to stay strong, it gets hard sometimes thought! Thank you so much for your support :)