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, 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 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 :)

1 comment:

  1. Amanda,

    I dunno how to say this if its a congratulations but I am glad you are on the list!! So they actually tell you your number on the list? I guess that can be good and bad.......but I am praying that you get that call ASAP!!!

    To be honest I really would LOVE to follow your journey on this transplant list. I see that you were talking about moving the blog to another site. If you do this will you be updating on that site? Do you update on FB about your transplant or do you keep that just to blogger?

    I am so glad you are out of the hospital and will be IV free just in time for your birthday. IF you do not post before your is your HAPPY BIRTHDAY!!

    I want to leave you with this Amanda.....I have never met you and just recently started reading your blog but I can tell what a true INSPIRATION you are to so many. You seem to have a heart the size of the ocean. I wish nothing but the best for you and your family!

    Take Care