Friday, February 22, 2013
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.
I just needed to vent. Thanks for reading. Prayers are very much so needed right now.
Saturday, February 16, 2013
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 :)
Monday, February 4, 2013
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? IT WORKED!!!!!!! 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 :)
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; I GET TO SEE MY BEST FRIEND!!!!!!
I can't wait to see my best friend!!!!
Prayers and good thoughts are always welcome and appreciated <3
Friday, February 1, 2013
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... Not a good place for a CF patient!! 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?!?!?!??!?!
Before, during, and after, getting my port accessed! Not fun!
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.
My day started out really good, I woke up and went and got my nails done with on of my Cysters, Alma :)
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!
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!