Before I talk about my trip I want to clear a few things up. 1st- No, I did NOT move to california. When I receive my transplant I will have to live down there for at least three months. But until then, I'm not moving anywhere. 2nd- I have no idea when I'm gonna be getting my transplant, it's NOT something you schedule, so unless you can tell the future, you're guess is as good as mine. 3rd- Getting a transplant does NOT cure me of CF. CF is a genetic disease that you can't get rid of. Getting a lung transplant is kind of like pushing a reset button. I'll have good lungs for awhile but my CF will make it's way back into them.
But anyways, here's the post you all have been waiting for!
California day 1 (Monday the 11th): My mom and I flew out of Portland at 4:30 pm. And we got to San Jose at 6:15 ish. All of the arrangements for this trip was made by a transplant coordinator. And we were told that we had transportation from the airport to the hotel and from the hotel to the hospital. Well when we arrived at the San Jose airport my mom called the hotel to ask when the next shuttle to the hotel was. And apparently the shuttle only picks people up from the airport if they are within five miles of the hotel...and we were 15 miles away from the hotel...leaving us stranded. We were stuck at the airport for a good three hours after our flight had landed. After driving an hour and a half my best friend Melissa came to our rescue and picked us up! Checked into our hotel and asked about what time the shuttle could take us to the hospital in the morning for my appointment and we had to be there at 9:30am. Well the only shuttle that we could get on was leaving the hotel at 9:30, so we had to take it. We had also arranged for a shuttle back from the hospital at 5 pm.
Top left: Me on the way to our first appointment at Stanford!
Bottom left: My Stanford ID card!
Top right: Southwest logo.
Bottom right: My momma and I on the plane!
Stanford day 1 (Tuesday the 12th, one month until my birthday): My first day at Stanford was a hectic one! We checked in and I got my "Stanford I.D." then we were off to my first appointment. First appointment of the day; was a meeting with a social worker. All we did was sit and talk about what's going on in my life. It was basically just seeing if I'm in the right frame of mind for a transplant. Second appointment of the day; was with the transplant nurse coordinator. We sat down and we had to watch a power point about the risk, complications, and what to expect (before and after). It was very informative. In between this appointment and my third appointment, I went and got an xray done that they needed in order for them to measure what size lungs I need. My third and final appointment; was PFTs. Just the typical PFT appointment. I had to blow into this machine a bunch of different ways. My PFTs were 21% which is kind of where I've been hangin around. I also had to do a six minute walk. Basically I just walk up and a down a hallway for six minute. They also want to do something called and AGB (artery blood gas) which requires them to stick a long needle into the artery in my wrist. It's complete torture!!!!! I let the RT (guy doing my pfts) attempt to get it because I didn't wanna seem "uncompliant" but he of course missed and hit all my nerves in the process. And didn't end up getting it. But turns out I didn't actually need one since I had just had one done back in December. After my appointments my mom and I went back to our hotel and ordered some room service! Word of advice: DON'T order room service because it's expensive and you don't even get that much food!!!
$25 dollars later....
Stanford day 2 (Wednesday the 13th): Our second day at Stanford was the most anticipated one. It was suppose to hopefully be the one that we found out whether or not I get put on the list or not. And even though we wouldn't have a definite answer for another week, we were told we would have a pretty good idea about what would happen. So we got to the hospital and we first met with the nurse transplant coordinator, who we had met the day before. Then we met with a nurse practitioner, who was a little odd and was very much so appalled by the fact I only did my vest for 10 minutes at a time, when I guess it's suppose to be done for at least 20 minutes at a time... No one filled me in on that. The last person we met with was the most important, the head of transplant doctor! He was absolutely amazing!!! And gave me two pieces of news that I've been dying to hear. First; even after transplant I can have/carry my own children. For those of you who know me, know that being a mom is one of the only things I want to be in life. And second; he gave me a choice to wait two months to be listed and just kind of see where I am then. Or get listed now and be put low on the list, but if something changes with me health wise, I'm already on it. He said that his preference was to list me now because I have declined so quickly but it was up to me. And that my wait will be at least 6-12 months. Well, I of course said list me now!!! So as of right now I am unofficially the newest member of the transplant list!!!!!!!!!!! The team meets every monday and since this monday is damn holiday, we have to wait tell the following monday to hear back. But it's 98% official that I will be listed :)
Picture on the left: Getting labs done for transplant.
Top picture: The entrance to the magical place I will get new lungs!
Bottom picture: Getting my ABG done :(
California day 4 (Thursday the 14th, final day/valentines day): This day was a LONG one. Since the shuttle from our hotel didn't go to the airport, my friend melissa stayed with my mom and I on wednesday night so she could take us to the airport this day. Unfortunately, melissa had to work at 1pm this day and considering it takes her at least an hour and a half to get back home. She had to drop off my mom and I at the airport at 11..our flight was at 4:15 pm.. But my mom and I were just happy she was able to take us! It was very much so appreciated So, thank you melissa :) Our flight home was good, short, smooth, and easy!! And I must say, it is SOOOOO good to be home!!
My valentine <3
So there it is, the post you have all been waiting for! I am on the transplant list!! It's so crazy to think about that!! But with that being said, I am going to be doing some fundraising for all of the expenses my family will have, every little bit helps. I am still selling my bracelets. $3 each!!! Let me know if you're interested in purchasing some!! Thank you all for your love and support! <3
One more thing, I want to take a second to thank my mom for everything she has and is doing for me. If I didn't have my mom by my side through all of this, it wouldn't be possible. I will never be able to thank her enough for what she's doing for me. I love you mom, you're my hero. Thank you for being the most amazing person in my life and not to mention my best friend <3
Prayers and good thoughts are very much so appreciated <3
- Amanda :)