Friday, December 28, 2012

Good news, Holidays and Relaxation!!

Hey everyone,

Sorry this post is sooo delayed. My schedule has been crazy the last week and a half. Especially with the holidays. I've been going, going, going and I'm so happy that all the craziness is finally slowing down! All I have left to do on my list I thought was never ending is my bone density test, scheduled on the 4th, and I have to complete my 24 hour urine catch... Which is proving to be a really big pain in the ass. Every time I pee I have to pee in this "hat" (picture below) then poor it into this jug (picture below) that I have to keep in my fridge, kind of gross but whatever.. lol. I'm really not feeling good today whatsoever. My left lung is absolutely killing me. It hurts to breathe. I'm trying to push out my hospital stay until after new years but I have a feeling that's not going to happen. Fingers crossed!!! I was told the other day (by mistake) that I'm a CF patient that complains a lot. I'm sorry if what I write and have to say comes off as me complaining because that's not how it is at all. When you spend as much time in the hospital as I have, you have to stick up for yourself if something isn't going the way it should be. So if you view my sticking up for myself as me being a "patient that complains a lot" then so be it. But I'm still alive because of it. 

Left side: The "hat" I have to pee in.
Right side: The jug I have to keep my pee in.

Monday the 17th: Monday was a pretty uneventful day. Since I haven't been feeling well lately, I'm trying to take full advantage of doing nothing when I have free time. The only thing that happened on Monday was my mom and I had a conference with Stacy (transplant coordinator). She was just checking in to make sure everything was going okay. And to tell us that all my test I've been going through all look really good and are coming back perfectly! 

Tuesday the 18th: Tuesday was the day I had been dreading ever since I started this transplant process. It was the day I have my G.I appointment. I get to the doctor and the first thing I ask for was an Ativan to help calm my nerves. It was kind of hard to get because the guy doing it was a butthole but I ultimately ended up getting one, which was really nice! He explained to me what he was gonna do, which terrified me even more. He was at first gonna stick this long tube that had ridges on it, up my nose and down into my stomach for 20 minutes. And then he was remove that one and put in a smaller one that was gonna be left there for 24 hours and I was gonna come back in the next day to have it removed. So he but this gel type stuff up my nose, and then tried putting the tube in. He didn't even get part way in before I started bawling, because it hurt like no other and I was scared. He tried doing it on both sides. Since that didn't work, he sprayed stuff up my nose to numb it. Then tried again. Same thing happened. He then looked up my nose and saw that my nose was almost to small for the tube. And he was gonna end up having to talk to my doctor to see what else they could do because he couldn't do it. So with tears running down my face, my mom, travis and I went home. I was SO happy to be out of there. 

Wednesday the 19th: Wednesday was spent trying recoup from Tuesday!

Thursday the 20th: Thursday was a really busy day for me. In the morning I got a call from Stacy, saying that she saw the notes from the G.I people and that Stanford said that I don't need to have it done since the swallowing test I did before I left the hospital last time, came back perfect... I was pretty ecstatic to hear this!! But then again, kind of mad since I had already attempted to go through all that torture. Around 11:30 I had an appointment to see a liver specialist. Because the last few times I've been on IV my liver toxin levels have been coming back high. And my doctors thought I might need a new liver. The liver doctor said that he's not concerned whatsoever about my liver levels, and that I get to keep my liver!!! My next appointment was a lung rehab one. Nothing to exciting to report there. Then at 3:30 I had a 90 minute PFT (pulmonary function test). I had to do regular PFTs, blowing into a machine, five times. And the good news there was my PFTs are now 26% instead of the 20% they have been for a few months now! Which is AMAZING!!!!!! I was so excited!!! The next thing I had to do was sit in this box (picture below) and blow into this machine (same pft machine) a bunch of different ways, measuring the capacity of my lungs and what not. Then I had to do a 6 minute walk test, I had to walk up and down this hallway (picture below) as many times as I could in a 6 minute period. I had to walk just at my normal pace. I was happy that, that was my last appointment for the day. Because I was pretty tired once I was done with all of them. Later that night, I went to my friend Kaylins house to do gift exchange with her and Bree. We all ended up getting each other scarfs.. we all definitely think alike. Oh bree also got Kaylin and I a tire air pressure gauge. They also surprised me with an idea that they have come up with to help me raise money for my transplant process. (Keeping it a secret until it actually happens).

Me doing PFTs and the six minute walk

Friday the 21st: I had a hearing test on friday. I already have some hearing loss for being on antibiotics my whole life, especially when I was six. I had a bacteria that no CF patient had ever had. The doctors had no idea what was wrong with me. And finally figured it out, the bacteria is now referred to as MAC. It's super common now and can be successfully treated with certain antibiotics for a long period of time. But because I had that, the antibiotics affected my hearing. And I lost my high frequency hearing, I can't hear a thermometer beep. The results of my hearing test was good, everything is the same! 

Saturday the 22nd: Was my little brothers 14th birthday!! I can't believe he's 14 already! It's so crazy to me. We didn't really do anything for his birthday because he didn't want to do anything. A week or so ago my mom ordered the rubber awareness bracelets you can get. And they finally came on saturday! We had ordered 200 of them, and I am currently down to only having 8 left!!! But don't worry, if you're interested in buying on we will have more sometime this week! They are $3 dollars each! All proceeds are going to be going to my family and I, for any and all expenses we will have during my transplant. Please, please, please, buy a bracelet and help me out,!!!! You can email me if you're interested, comment on this post, or send me a message on facebook!

These are the bracelets (front and back) that I'm selling to help raise money!

Sunday the 23rd: My friend Lauren and I went and got some peppermint hot chocolate from Starbucks, then went to Peacock Lane. It's a street in portland that decorates each house on the block in a bunch of Christmas lights. It's really cool. After sitting in a long never ending line of cars for over a half an hour, we finally got to see all the pretty lights! 

Monday the 24th: Monday was Christmas Eve, and also the day my best friend (Melissa) flew in from california!!! I was very much so excited to see her!! I hadn't seen here since the beginning of september, I think it was. My family and I all went out to my aunt and uncles house for a christmas eve dinner!! It was nice :)

Tuesday the 25th: Merry Christmas!!!!!!! I hope everyone had a wonderful christmas, I know I did! Most families wake up bright and early on christmas morning to do presents because they're all sooo excited...but not family didn't wake up tell 10:30 am. After we had our christmas my mom, sister, and I went over to my other aunts house for a little dinner. It was good! After that, I took my mom and sister home and went over to Melissa's moms house to do christmas with them. And then my mom, me, and melissa took christmas dinner up to my friend Mat, who has CF, who was in the hospital! It was a good christmas and it was even better because I got to see everyone I loved that day. Especially Mel <3

Me on Christmas day, wearing the scarf my grandma made me!!! <3

Melissa and I on Christmas day at her house!! <3

Wednesday the 26th: Wednesday was a day spent recovering from all the craziness of christmas!

Thursday the 27th: I had my rehab, it went really good! Nothing to exciting, just same routine. After rehab I went up to the hospital to pick up to the unsold bracelets and the money that mat had from selling some of the bracelets. Then I went and caught up with one of my other CF friends, Emily! And since thursday was melissa's last night here, her, lauren and I decided to have a girls night. We went to Shari's because I wanted some pie. There was an elderly couple at the table next to ours. And the wife was kind of teasing us that the husband was gonna steal our pies. Our waitress brings over our bill and then walks away with the elderly couple, and then walks about to our table and tells us that the elderly couple had bought our pies for us :) It's nice to know that there are still good people like that in this crazy world we live in. The next stop we made was to Dutch (Dutch Bros). Where we ended up getting free drinks! So since we were on a good luck streak we decided to buy some scratch its (lottery tickets). Spent $20 dollars on scratch its and won $13 dollars back...not exactly a win...

Friday the 28th (today): Was a sad day because I had to say good bye to melissa. I hate saying bye to her, it's always hard. But I should hopefully see her within the next month or so! It was nice getting to spend the week with her. Other than that, I haven't done anything today. I'm really not feeling that well. I'm slowly giving in to being sick. And finally completing my 24 hour urine catch today and will be turning it in tomorrow!!!! Then we just wait to hear back from Stanford.

I hope everyone had a wonderful Christmas and I hope everyone has a safe and fun New Years!! Yes, I realize this was the longest blog post in the world and I'm sorry. I won't let it happen again! :) Don't forget to buy a bracelet! So far I've raised roughly around $450 dollars. I can't even begin to say how grateful I am to have such a wonderful support system standing behind me. Thank you all so much. I love you all more than anything in the world. Thank you <3

Prayers and good thought are always welcomed and very much appreciated <3 

-Amanda :)

1 comment:

  1. Amanda sweetheart, if you don't remember me, since I don't believe I've seen you since you were brought home from the hospital when you were born, I am a school friend of your amazing Mommy, Sara. I helped give you your first bath at home, with you, your Mom and your Gramma Sue <3 - a day I always think of...bcuz you were so little, beautiful, and innocent. Pure beauty...

    Anyways darling, I read your blog as often as I can. Sometimes its hard to read, simply bcuz I can't fathom the fact that you have to go thru all this, and then I think of that day when you came home from the hospital, so tiny, sweet little baby this gorgeous, SO bright & shiny Angel on earth. How can I even express the admiration and inspiration you sparkle with...there are no words. I wish I had a magic wand...

    And, your Mom and family...amazing and beautiful in every sense of the words. Truly troopers!!! I love and adore all of you very much.

    With all that said, I would and want to buy a few of your bracelets. I love them!!! I'll make arrangements with your Mama to do so asap.

    Praying for you darlin' & Congrats on being on the transplant list...but I'm so sorry about the "dry run" :( however, hopefully, that was just Gods way if getting that part out of the way quickly, so your next call will be the real one... FINGERS, TOES, LEGS (lol), ARMS, EYES...EVERYTHING I can cross, is crossed with HOPE that you shall be blessed ASAP with those happy new lungs!!!

    Hope to see your sparkly smile & your Mama's high pitched squeaky happy voice real soon...

    Need to catch up with that wonderful woman too!!!

    Until then, TONS of X's & O's <3

    Sara ;)

    ps...keep on writing doll - your words and experiences reach many, probably beyond your imagination... ;)