Saturday, December 8, 2012

It's been a looonnngggg week

Hi everyone!!!

    I'm sorry I haven't posted anything this week. I've been super super busy with appointment. Literally everyday this last week I've had a least one appointment! I'm so incredibly overwhelmed with appointments and procedures I have to go through, and long 'To do' list that I've been given. I came home on Monday, after a long long day at the hospital, since they thought it was necessary to make me go through all these last minute test before I got to go home. Tuesday, I had my lung rehab appointment, it was really nice to finally be back in there working out and building my lungs! Wednesday, I had a counselling appointment. And I received a call around 10:30 a.m. or so from Stacy, who is the transplant coordinator that will be helping with through this process. She called and gave me a huge list of things I needed to get done before my information can even be sent down to Stanford. Well..we were all kind of under the impression that it already had been because that's what my doctor had told me. At this point in time I am not very happy with my doctor because he has failed to tell me a lot of things and he's mislead me a lot. I'm just so over it. Anyways, Stacy told me that she had just finished putting in orders for me to see a bunch of specialist. Basically, every single specialist you can think of, I have to see. Every test/procedures you can think of, I have to go through.. She gave me a list of people I should be expecting calls from, this list consisted of; OBGYN, GI (gastroenterology), Dermatology (skin), Cardiology (heart) and someone would be calling me to schedule a bone density scan. And I also needed to get in to see the dentist. Within two hours of receiving her call every single one of these people called me to schedule an appointment. I made an appointment to see an OBGYN for the following day. Which happened to be thursday so I also had my lung rehab appointment that day. It was a horrible day, by the end of it, I was so exhausted!!!! Luckily thursday night, I had plans with a few of my girlfriends to have a girls night. Having something to take my mind off of being sick, even if it was just for a short while, it was still nice! Then on friday, I had an appointment to see cardiology for a pre-op (pre operation). I was so incredibly happy to have my mom and my best friend there with me to hold my hand. Even though nothing happened other than talking. But an appointment was scheduled for me to go in and have this procedure I have to have done, done. It will be on Tuesday. I will be given a light sedative, then they'll numb a part of the left side of my neck, make an incision  thread a long tube down my vein into my heart and then into the top part of my lungs.  What they are doing in measuring the pressures around my heart and my lungs. I'm not very excited whatsoever.. I'm actually kind of scared :( The other appointment I'm scared for is the GI one, that has been scheduled for the 18th. This procedure involves me having a long camera stuck down my throat for 20 minutes. Then putting a small tube down my nose all the way down into my stomach, to measure the acid levels in my stomach that's left there for 24 hours.. Yeah.. not happy about this shit.. But anyways here's my schedule for the upcoming week; Monday, CF doctors appointment. Tuesday, cardiology procedure. Wednesday, check up with non CF doctor and counselling appointment. Thursday; I have lung rehab. Friday, dermatology appointment. Not to mention there's two pages of labs I have to have done as well. My weeks are jam packed full of fun and exciting things... NOT!!!! Needless to say I am EXTREMELY overwhelmed with appointments right now. I don't think I could be doing this without my mama, she's been incredible during this whole crazy process! She handles all of my appointments for me. And it's a good thing she takes me to all of them, because I probably wouldn't go if she didn't! lol. 

I found these on Instagram and thought they were funny! I know my fellow CFers will enjoy them!

    On a good note, all of my friends are returning home for the holidays and I couldn't be more excited about it!!!! I'm so happy to have all my friends back! Especially my best friend Lauren!! She's incredible, I don't know what I would do if I didn't have her by my side holding my hand, freaking out even more so than I do. Lol :) Lately, I've been having girl nights with a few of my friends from high school, who I've never really been close with so it's great to be hanging out with them!! :) I'm in the mist of making a couple of them scarfs for Christmas, so lets hope they turn out okay.. lol! And if not, they all better pretend that they like them!! This week, I also got to see one of my best CF friends, Mat. He came on wednesday night to crash at our house for the night. Because he's being admitted to the hospital on Monday and had plans to go to Corvallis for a few nights before hand and didn't wanna have to drive the whole way in one day. Cause it would've been close to a five hour drive. I like to write about random acts of kindness people show, so here's my story for the week. Since my cardiology appointment was scheduled for such a close date, I started to freak out a little bit so yesterday Lauren and I went and got our nails done. The lady that did our nails is my friends boyfriend, mom. Sitting with her, we got to talking about me being in the hospital and what not. When I went to pay her for my nails, she said that it was on her and not to worry about it :) I couldn't believe it! It was the most amazing gift, after the long week I had, had!! Thank you Sandra for what you did!!!! :) Also, tonight my 13 (almost 14) year old brother had his first Oregon All Star Football game, it was intense!! But they totally kicked butt and WON!!!! 20-7!!!! I couldn't be more proud of my little brother. He has another game tomorrow, that I will be at on the sidelines cheering as loud as my little lungs allow me to <3

My not so little brother, Austin <3

    I will update again, most likely on wednesday. But if not on wednesday then definitely at the end of the week. I'm scared and I feel like I'm breaking down, so prayers are welcome and very much so appreciated, especially these next few weeks. <3

- Amanda :)


  1. Wow. That definitely sounds like one chaotic week. I think us CFers revel in the chaos though. We're so used to it that we don't even realize how much is going on just until we can sit down and actually think about it. I'm glad you got a lot of stuff done and out of the way :)

  2. My prayers are with you Cys! We are all here to support and stand by your side. Sounds like a really sucky week! Im glad youve been able to hang out with friends though, because that always makes me feel great! (temporarily) ha But its better then nothin!:) Good luck with all of your tests and procedures. I hope they all go well and that you wont go to crazy! which Im sure your already there from all the overwhelming events going on =P I would be to... keep kickin CF in the butt!