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! RealHeroesBecomeAngels@yahoo.com

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 mine...my 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 :)

Monday, December 17, 2012

Roller coaster week

Hey everyone!

    This past week has been a crazy one to say the least. Lets start off with Sunday the 9th! My bothers football team won their second game which meant that they got to travel to Reno for their next set of games, which took place the weekend of the 15th and 16th. My brother, sister, dad, and one other family from gladstone, drove to Reno on Thursday night and will be returning Monday (tomorrow). Unfortunately  my brothers team did not win the game that they needed to in order to continue to the finals in San Antonio, Texas. I couldn't be more proud of him though!! He did absolutely amazing!!! He played his little heart out being on this All Star team. And just being asked to play of this team was such an incredible opportunity for him and I hope that one day his future will benefit from this. Because after all, he his my retirement fund ;) lol. Monday: Was the day I had been looking forward to for the last two weeks! The day I came off of IV!!! I was so excited to be done with IV's, they get really old, really fast. I had a doctors appointment that day to see if I was ready to come off or not. I did PFT's and they were 20%, which is what they have been for awhile now, so it's good that they haven't dropped but bad because they haven't come up at all. My weight was also down as well, 103. I don't know what is going on with my weight lately. I've been going up and down and down and down some more. And I have no idea why. I'm doing everything I'm suppose to be doing and it makes it that much more frustrating to me. My doctors yell at me every time I lose a pound and I'm really getting sick of it. I know a lot of CFers read my blog, so if you guys have any tips/tricks to help gain weight, please share with me by leaving a comment below! Since I'm in the process of getting on the transplant list there's a ton of labs and test I have to get done. So before I got "de-accessed" (having my IV taken out of my chest, picture below) I had about 97% of my labs done, to save my arm a needle stick or two! They ended up taking 23 vials of blood from me (picture below). By the time they were done I was very light headed! After my appointment, my mom and I headed to Red Robin where 26 of our family members were waiting to celebrate my sister Ashley's 18th birthday!!!! It's crazy to me that my little sister is legally an adult. She can legally sign for that matching tattoo I want to get with her lol :) Unfortunately  now that I've been off of IVs for a week now, I am sick yet again.... I swear my body is becoming dependent upon antibiotics. I always feel 100% better when I'm on them for the last few days and then a few days after I come off. But now, I'm right back to where I had originally started :( I'm so sick of being sick.. I have a feeling I will be back on antibiotics and in the hospital by new years eve. :(



Left; all 23 vials of blood they took from me.
Right; my port, IV free <3
A view from the end of the table of all my family at my sisters birthday! 
This isn't even everyone that was there! lol Poor waitresses..

    Tuesday: This is one of the days I've been dreading most with this whole process. It was procedure day. I had to have my right heart catheterization done. The nurse I had, I wanted to punch in the face. He treated me like I was five, talked to me like I was five, and asked the stupidest questions ever. And to top it all off I had to wear one of those oh so fashionable hospital gowns, which I HATE with a passion. The plan was for them to mildly sedate me so that I wasn't asleep but I was relaxed! Then they were gonna make a small incision into the artery in my neck, then they were gonna thread a tube down my vein to my heart, in my heart, and then in to the top of my lungs and what they were doing was measuring the pressures in those places. But because nothing ever goes as planned with me, they had to go in through my groin instead of my neck. Due to the fact that the doctor doing it thought it might interfere with where my port is. When they attempted to put in the little tube, they kept running into my vein when they needed to get to my artery. So they had to make not one but two incisions. And because they had to go in through my groin I had to stay at the hospital an extra three hours before I was aloud to move my leg. It's basically six days after I had that procedure done and I still can't walk because my leg is still severely bruised (Picture below). I was happy that I had my mom, my  dad, my best friend Lauren, and Travis by my side holding my hand the entire time! I don't know how I would've done it without them!! On a side note, when I came out of the procedure I was shocked to hear about the shooting at Clackamas Town Center. But was revealed and thankful to hear that all of the family and friends I did have at the mall that day, did not get harmed. My heart goes out to the familys that did lose their loved ones on that tragic day. I am truly sorry. 

Top left picture; my battle wound on wednesday morning. 
Middle picture; me before my procedure.
Bottom picture; my battle wound again on friday.
Big picture on the right; my best friend Lauren who came with me on procedure day.
    
Top left: wednesday morning. Top right: thursday morning.
Bottom left: friday morning. Bottom right: sunday morning.

    Wednesday: I was suppose to have an appointment with my counselor but I wasn't really feeling like talking all that much and I couldn't walk because my leg hurt so badly. So I had my mom call and cancel it for me. I don't know if I want to go back to counselling or not because when I'm there I just have nothing to say to her. I'm the kind of person where I have to really like you in order for me to open up to you. And going to a councilor isn't helping me any, if anything when I'm there it's just frustrating me more. I might look in to finding someone different. Maybe one that specializes in chronic illnesses. I also found out on wednesday that one of my cysters (girl with CF) Breanna, who was 11 years old, gained her wings on monday. I was completely heartbroken when I found out, I had just started talking to her not to long ago and I hadn't got the chance to meet her or even get to know her for that matter. Whenever the CF community looses one of its members it's heartbreaking to all of us, whether we knew them or not. We all share a special bond with one another that no one else has. My heart goes out to Breannas family and friends. I'm sorry for your loss.

    Thursday: I feel like thursday went on forever! It was such a long/sad day. I went to a funeral with two of my friends. One of the girls we went to high school with lost her 17 month old son Caydn, very unexpectedly. And even though I wasn't ever very close to her, I still wanted to go and offer her my support. It was extremely heartbreaking. I can't even imagine what their families must be going through right now. I'm sorry for your loss Bri. RIP baby Caydn <3 Please help the family raise money to pay for this sweet babys memorial service. Anything helps! 

Sweet baby Caydn
Donate here ->  http://www.gofundme.com/1ng6sg 


    Friday: Was a sad and tragic day for our country. The shooting at Sandy Rook Elementary school is something that will never be forgotten. I will never understand how someone could take someone elses life, let alone lives of innocent children and teachers. It sickens me. Everyone who has been affected by this shooting, I am truly sorry for your loss and the pain you are going though. No one will ever understand why what happened, happened. My sliver lining that day was that I got to celebrate my friend Travis's 22nd birthday with him and his family! His mom made an awesome dinner, that was delicious!!! Then a little while later I went to the movies with his family, him, and a few of his friends. We went and saw the Hobbit. A movie I wasn't very excited to see by any means because I honestly have zero interest in the whole Lord of The Rings series. I found myself falling asleep really frequently, which I don't ever do while at a movie. Lol. 

    This upcoming week is going to be another busy one, but I'm happy to say that after this week is complete I am done with 95% of my transplant testing!!!!! WOOOO!!!!! Tuesday (tomorrow): G.I. procedure. Wednesday: Take out GI prob. Thursday: Lung rehab and gift exchange with friends!!! Friday: NOTHING!!!! Saturday: My brothers 14th birthday! And then on monday the 24th, my best friend melissa will be here!!! I hope this week goes by fast! 


Picture from my girls night a few weeks ago! 
Me, Kaylin, Juli, and Bree :)


    Prayers and good thoughts are always welcome and very much so appreciated. And please send prayers to everyone who has suffered and lost so much this past week. My heart goes out to everyone who lost loved ones and friends. 

-Amanda :)

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 :)

Monday, December 3, 2012

Finally Home!!!!!


    I'M FINALLY HOME!!!!!!!!! I'm so incredibly happy that I got to come home today. After the day I had, I thought I would never get released. So to start my day off right, my nurse comes in at 8 this morning and tells me that I'm going down for a test in an hour... okay nurse. Mine and my moms first question is what does this test entail. My nurse goes and brings my mom these papers that tell us, I"m going down for a procedure that they have to mildly sedate me for and I have to have a camera shoved down my throat so they can look around inside my body. Uhhh WHAT?!?!?! Naturally, I start freaking out because first of all no one told me about this and second of all that's not how I wanted to be woke up. Now my mom and I start panicking, she calls my dad, who typically runs on no sleep and he has nights where he just drops and last night was one of those nights, so he wakes up rushes to the hospital. We're down in a random hallway just sitting, waiting for me to go back to get this procedure done. My dad shows up. Finally someone comes out and we ask them what exactly this procedure is, and she says she was gonna go and check and then come back and tell us...she never came back. When someone finally does come to get me, they take me and my parents into this x-ray lab, and turns out all I have to do is drink something... Thank you nurse for scaring the living shit out of me. (Picture below on the upper left side; the worm looking thing is the contrast I had to drink). After I finish this, we go back up to my room, where my nurse tells me I have yet ANOTHER test I have to do before I get to go home. Mind you, before I get to go home I have to have my port reaccessed and I have to meet with the home IV people (who apparently won't be there tell 3, it's around 11:30 at this point). To add something else on my plate, I have to have an IV put in my arm in order to do the scan for my lungs. Because using my port would mess with the quality of the picture.. The point of me having my port is so that I don't have to have any more IVs put in my arm. I go down for the scan, which went really well, all I had to do was lay there while this cool machine took pictures of my lungs. Turns out this scan was to see/measure how much blood flow my lungs are getting. If you look at the picture below, the one on the upper right side, shows that I don't have use of the top part of my right lung. After I finished this scan, I came back up to my room and my nurse comes in and tell me that she has to take labs from me before I get one of my antibiotics, which would've been fine and dandy, if it wasn't due at 5 pm. Which would've meant she was gonna take labs at 4:30 pm, it was 12:30... Yeah, no not happening. I call my mom and she calls home IV and they decided that I can leave after I get my port reaccessed and I don't have to have labs done today!!!! Well I get my port reaccessed and I'm waiting for my nurse to come give me my discharge papers...but no... she walks in with an antibiotic in her hand, that I apparently have to get before I leave. At this point in time, I'm just fed up with everything!! I'm pissed, I'm frustrated and I just want to go home. She starts my IV that's only suppose to take a half hour. Fifteen minutes in to it, I look up at my bag to see how much was left, only to discover that my nurse didn't undo the clamp to start it, so I've been sitting here for fifteen minutes for nothing... Thank you nurse for really pissing me off and messing with my day. All I wanted to do was go home.. I finally get released around 2:30 pm or so. And after the day I had, had at that point I didn't think I was ever gonna get out. By the time I left, I was just so done. I'm happy to be home, even though I have to be on IVs for the next week or so. Doing everything myself is so much better than being in the hospital!!!!! 

Top left: The worm looking thing is the contrast I drank.
Top right: The blood flow throughout my lungs (notice there's none to my upper right side)
Bottom left: The IV they had to put in for my lung scan.
Bottom right: ME :)

    Due to my shitty day I had, on our way home my dad took me to dutch (Dutch Bros) to help with my day :) I love dutch!!!! It's delicious :) I'm so happy to be home and to be free. I'm anxious to get back into my normal routine. This week is full of appointments and fun. I have lung rehab tomorrow, counselling on wednesday and my friend Mat, who has CF, is coming to stay the night at my house. Because he lives in Pendleton and has a doctors appointment on Thursday in the morning and he doesn't want to have to wake up super early to drive four hours. On thursday, I have lung rehab again, then having a girls night that night to :) And on friday, I have an appointment to meet with a cardiologist, it's required for transplant. Crazy busy week I have. But I've decided that from now on I'm focusing on me and only me, at least for the time being. I have so much going on in my life, that I need to figure out. And that takes priority over everything and everyone. My health is my main focus. This new chapter I'm starting in my life is going to be a good one. And those who are important to me and those who love and care about me will be right by side during this new chapter. Thank you everyone for all your love, care, support, and for believing in me. It still amazes me how many people I really do have in my corner <3

Prayers and good thoughts are always welcome and appreciated <3 

-Amanda :)

Sunday, December 2, 2012

Hospital Stay Day 7


    I've officially survived seven whole days in prison. But I must say I am very anxious to go home tomorrow! I can't wait to get out of here and be human again. I had to have a blood gas test done today. Which measures the amount of carbon dioxide I'm moving in and out of my body, to make sure nothing's wrong and I don't need oxygen. They do this test by sticking a long needle into the artery in my wrist. And let me tell you, it hurts like hell. Last time I was here, the person that did it had to do it twice because he missed the first time. But the second time wasn't any better because he missed the second time as well, but I wasn't about to let him do it again. So my doctor said it could wait tell I was here again. Everything went good today though, the girl that did it, got it on the first try and she numbed my wrist first, so it didn't hurt as bad. All of my levels came back fine!!! Which is one less thing I have to worry about. :) Other than that, today was pretty uneventful just like the last few days have been. The most exciting thing when you get to leave the hospital, other than getting to leave the hospital, is being able to take a decent shower when you get home!! And I know that all of my cysters (girls with CF) and fibros (boys with CF) know exactly what I'm talking about!!! Before I leave tomorrow I have to get my port reaccessed. When you're using your port for you IVs, when it's accessed, it has to be redone on a weekly basis. It sucks. That means that, they come take out the needle I have in it right now, kind of clean around it. Put numbing cream on it, wait a half hour to 45 minutes, they come back clean around the site again, then stick a needle back in it, and bandage it up, then wallah, all done :) It's not as bad as it sounds, but it does suck. And since I'm going home on IVs I have to have it done. 

    The visitors I had today were my friend Adrienne, who has CF. Her friend Jessica, and jessicas cute little baby girl Kaydence!! She's so darn cute :) I love babbies, I hope one day I get the chance to have some of my own!! I'm finally starting to smile again. I think it's because I've accepted the fact that whatever's meant to be, will happen. And I'm finally focusing on myself, my health, and realizing that the right guy will come along some day. And he's gonna wanna stand by my side through anything and everything, when I do find that guy, I'm not gonna let him go because it takes a very incredible/amazing/strong person to take on someone with a life threatening disease. Who knows, maybe I've already found him and I just don't know it yet <3 

Little baby Kaydence <3


   I will post tomorrow at the end of the day, as usual!! Prayers and good thoughts are always welcome and very much so appreciated <3

-Amanda :)

Saturday, December 1, 2012

Hospital Stay Day 6


    Well it's the end of day six in the hospital. Not much happened today, but last night was quite eventful. Other than the fact that I gained a pound!!! Which makes me 105 pounds.. Only 15 away from my goal weight! Woo!! Last night I had the sweetest nurse ever. However, for the life of her, she could not find the right attachment to my night feed bag. She literally went back and forth four different times in order to find the right one. I felt so bad for her. After that finally all got figured out, my dad calls my mom and says my brother isn't doing well and that he needs to be seem. My brother has been sick for the last few days now with flu like systems. And last night his ear starting hurting him so badly that he was almost to tears. So my dad and sister came to the hospital and my mom met them down in the ER, mind you this was 11 at night. After everything was said and done and the doctor that saw my brother told my parents to just give him some sudafed and that he'd be fine, it was 3 in the morning. And while they are doing this, I was peacefully sleeping away in my not so comfy hospital bed. Lol. But he's getting better, this flu bug just kicked his butt for a few days. As for today though, it was a pretty boring day, just a lot of sitting around and watching tv...same old, same old. These last six days have been the longest six days of my life, or at least thats how it seems. At least I have my puppy up here with me now :) 

    Every day I have had visitors, which I love! Today's visitors were my sister Brittany, her mom Roni, and my Aunt Wanda. It was really nice to see Brit and Roni because I hadn't seen them in what seems like forever, so it was good to see them. Then my auntie surprised my mom and I with a visit. And then came back again a little later with a delicious home cooked meal!! It was the best thing I've ate in six days!! :) Thank you guy for coming to see me, I really appreciate it. And it means the world to me!!! 


One of my three favorite sisters, Brittany <3

I will post tomorrow and/or when something exciting happens! Prayers and good thoughts are welcomed and very much so appreciated <3

-Amanda :)



Friday, November 30, 2012

Hospital Stay Day 5


    Day five in the hospital, and despite all the wonderful visitors I've had since I've been here, I'm beyond bored. I wish I could say I was feeling better to go home but I'm not. I mean, I'm definitely feeling better than I was when I was first admitted, but I'm not where I need to be to go home. The word around the hospital is that hopefully I'll be out of here on Monday!!!! One of the reasons they aren't shoving me out the door is because my little brother is at home right now really sick with the flu. And going home and catching the flu, doesn't sound like a good time. Lol. Nothing medical exciting happened today, which I guess is a good thing! So for right now, we're just kind of going with the flow. When I do get to go home, I will be on home IV's which is a whole of a lot better than being stuck in here. The RT (Respiratory Therapist) I had today, isn't my favorite to begin with. And for one of my inhaled medicines you have to mix with saline. To mix it you have to use a needle. Well after my treatment was over, my sister pointed out that he had left the needle sitting on my little bedside table I have. Uhhh, that's a huge mistake on his part. How does he know, I wouldn't have like stabbed myself or something. I mean, I wouldn't have but someone else may have. I couldn't believe it. I most certainly said something to my nurse and the RT I had for my treatments tonight. I must say, I'm kind of nervous because it's the weekend and you know what weekends mean.... shitty nurses... yay... just what I want to deal with. Please, please, please keep your fingers crossed that nothing bad happens this weekend. And that everyone that comes into my room, makes it out alive :) lol. 

    I had lots of visitors today, which is awesome!!! I got to see my dad and my sister, they brought me my favorite drink in the whole world. An extra sweet raspberry, peach, coconut rebel from Dutch Bros. Then I got a surprise visit from my friend Bree, who also brought me my favorite drink in the whole world :) So yes, I had two energy drinks today!!!! Which when I'm not locked up, having two a day is a very typical thing for me. I also got to see my friend Kaylin today!!! She just brightens my day because she's always so happy and upbeat! But most of my friends are :) It was really nice to see both of them today. I'm lucky to have such amazing friends. I cannot wait to have our girls night when I get out of here!!! It's for sure something I have to look forward to! 

    Well it's definitely time to get some sleep, since I didn't sleep very well last night thanks to beeping machines..the joys of being in a hospital. Prayers and good thoughts are welcomed and appreciated <3 

- Amanda :)

Thursday, November 29, 2012

Hospital Stay Day 4: One approval down, one to go!

Hey everyone, 

    Day four is about to come to a close but today was definitely the most exciting day ever. Today was a fabulous day!!! Today was the day that my doctor was presenting my "case" to the rest of the kaiser transplant team to see if they all agreed that I was ready to receive a double lung transplant. I have been anxiously awaiting to hear the answer to that question for a very long time now. When I saw my doctor stand outside my room to gown up (I'm in an isolation room because I have CF) I got very nervous. Well the answer to that question is YES!!!! They all agreed that they think I'm ready to move forward with the transplant process. So now the next step is a transplant coordinator is going to get my file ready (all my test results, my history, and whatever else they need) and send it down to Stanford. See if they want or need any other test. We then have to wait to hear back from Stanford, which could take 2-3 weeks, to see if they accept me and to see if they agree that I'm ready for transplant. If and when they do, my mom and I will fly down to California for a couple days to meet the doctors and everyone else and we will get a pager!!! I'm sooo excited!! But I'm also absolutely terrified. The last few days I have been told by many people how strong, brave, inspirational, they think I am and honestly, I'm freaking terrified. I go back and forth with what I want every five minutes, I break down and cry out of nowhere, I'm only human. The place I find my strength from is my family and my friends. I wouldn't be here today if I didn't have something to live for. My family and friends give me that something. I would have no reason to be going through this incredibly hard process. I love them more than anything in this world. I couldn't be more thankful to have them by my side :) I can't wait to start my new life, with a new set of lungs. I want to be able to walk down the hall without thinking about how short of breath I'm gonna get. I want to start my life, go to college and be a typical 19 year old girl. I want to finally be able to make the move down to california and get an apartment with my best friend :) AND I should hopefully be out of here by saturday, maybe sunday!!!

    This hospital stay has been full of visitors!!! I'm so happy that so many people have came up to see me since I've been here. It makes being here a lot easier. My visitors today were, Sue, Boo, Johnny, Rose, and DJ!!!!! Oh and not to mention my favorite nurse ever, Katherine, stopped by to say hi today! I was so excited to see her because it had been forever since I had seen her. When people come to visit me, it takes my mind off of the fact that I'm in the hospital and that I'm sick. Thank you all for all the support I have been shown. It's absolutely incredible!!! I love and appreciate each and everyone of you <3 As you guys all know I am in the hospital for awhile and quite frequently, so after awhile hospital food gets old and I stop eating. So in attempt to get me to eat, my wonderful mommy went out and got me one of my favorite candy's and dinner!!!! I can't even begin to describe just how delicious it was :) While we are stuck here in prison, a.k.a the hospital, my mom also knits, so while we've been here she made this absolutely beautiful scarf. And upon telling my sister Ashley about my approval, she drew me this really awesome picture (pictures below) :) Thank you both for your heartfelt gifts!

 My yummy, yummy food I had today :) 

The scarf my mommy made me (left) and the picture my sister drew me (right) :)

Please continue to send prayers and good thoughts my way. They are both very much so appreciated and welcome <3

-Amanda :)

Wednesday, November 28, 2012

Hospital Stay Day 3


Well, today was day three in the hospital. Bright and early this morning, around 8:15 or so, I got woken up by my nurse telling me that I was going to be going down to get and ECHO done of my heart in about 45 minutes.. Awesome... That's definitely NOT how I wanted to be woke up but okay, thanks. I realize 8:15 isn't that early, but in a life of a CF patient, it's VERY early. I went down for my ECHO, where they took pictures of my heart by doing an ultrasound. Looking to make sure that my heart is still doing okay, given that it has to work really hard to pump blood throughout my body twice has hard. So all fingers and toes crossed that everything comes back looking good! The guy that did my ultrasound said that from what he saw, everything looked good. So now we wait to see what the doc says tomorrow. We did however get the results from my CT scan that I had done last night. And everything looked perfectly fine!!! No cancer, no cyst, no nothing :) A little while ago my nurse came in and told me that they wanted a urine sample, which isn't a problem, but I wanted to know what for. And she said "It's to see if your pregnant." Okay doctors, if I was pregnant, don't you think you would've seen something on the COMPLETE body scan you just did. Not to mention the x-ray that was done the first day I was here. And if I was pregnant this whole time, most, if not all of the medications I'm on would've harmed the baby in some way. So thank you for harming/killing my non existent child... Right now, I'm waiting for my nurse to bring me in all my nightly medicines. I'm pretty tired today, I've been..um..distracted and staying up late the last few nights. :) So tonight is an early bed time night! 

I had lots of visitors today, which I love!!! My grandma came up for a little bit and brought me some candy! Shortly after she left, my friends mom, Santi, came up to visit me. It was an unexpected but very welcomed visit. It's nice when random people come up to visit because it makes you realize how many people really do truly care, even if you don't know it. She brought me up some goodies as well. (Picture below, Santi's gifts on top, and grandmas on bottom.) And later today, I got to see my brother, sister and dad for a little bit today. Which was really nice, because I miss them so so much!! I miss being home with them. So it was good to see them for a bit today :) I love them dearly!!! But it's really nice, that I have my mom here with me and that she's been here with me the whole time. I don't know what I would do if she wasn't here <3

My goodies I got today!!! Thank you both <3


I'll post again tomorrow when I get the results of my ECHO!!!! Prayers and good thoughts are appreciated and welcome <3

-Amanda :)

Tuesday, November 27, 2012

Hospital Stay Day 2


   Well today was day two in the hospital, and so far so good!! I surprisingly got pretty good sleep last night. Which isn't typical for being in a hospital. But it was nice :) I've been waiting literally all day to see someone from the IV team because the bandage the lady put on yesterday, is basically falling off and I need a new one put on.. But I've yet to see anyone... I also talked to the doctor today and of course, even though I'm  doing everything I'm suppose to be doing, it's still not good enough. I just recently switched my night feeds formula to something different because my stomach just couldn't handle it. Every time I would do my night feeds, I would wake up nauseous, I wouldn't want to eat the entire next day, and my stomach kept emptying itself out. Therefore, I didn't want to do it and I was losing weight. So after three years of complaining they finally changed it about a week and a half ago. I do two cans a night, every single night, and I haven't gained back any weight yet. Well when you're sick, do you put on weight? No, you lose it. So I got an ear full from my doctor today about me not gaining weight. It's not like I choose to lose weight. I get so fed up with this particular doctor constantly telling me what I'm NOT doing. It's really discouraging. He ordered a CT scan of my entire body to check for cancer, to see if my liver is okay, and basically to look for anything abnormal. I completed that and we'll know what it shows or didn't show by tomorrow!! Fingers crossed!! In order for them to look at my insides I had to drink this gross contrast shit. Well I am now having bad stomach problems. Like I don't want to move or put anything in my stomach because it hurts so badly. The thing I hate about getting test done, is not the actual test itself, but it's waiting for someone to come get me and take me back to my room. After my CT scan I had to wait a good 20 minutes before someone came to get me. I was half tempted to walk back up my room myself. But I know that they frown upon that and that my lungs would probably hate me if I did. So i just sat and waited patiently! While waiting patiently I started to read some of my papers that they send you down with and on the paper I noticed that it says "Precautions: Family at bedside." And I just thought that was the funniest thing. Because we always tease my mom about all the staff warning each other about how overprotective my mom can be. And that she asks a lot of questions!! (picture below). The social worker that came in to talk to my mom and I yesterday, came back in today to finish up her evaluation. She was here for about two hours talking to us and asking us a bunch of questions. When she was finished up with all her questions I asked her as she was leaving, in kind of a joking manner if we "passed." And she didn't really answer and left. Now, the reason I had to have someone evaluate me and my family is to make sure that I am in the right frame of mind. And to see if I have a solid support system, which I do. It was a very much so make or break thing. Well a little bit ago, my phone rings and I answer it and it's the social worker. She called to tell me that she told the doctor in her evaluation that she thinks I'm a good candidate to receive a transplant!!!! And so to answer my question, YES I PASSED the test!!!! :) It was quite possibly the best thing I've heard in my entire life. I almost cried!! 



   On another good note, I got to see my friend Jessica and her cute little baby boy Liam (picture below)!!!! He's absolutely darling. I love him!!!! I didn't want to let him go! It was so nice to finally be able to meet him and of course to see Jess. I love it when people come up to visit me, it reminds me that I do have people that care for me. It means the world to me :) I don't have any visitors planned to come up tomorrow so if you would like to come visit, please do!! I also got to see Addie for a little bit today. And I got to meet her cute mama as well!! It's nice to know and to be able to talk to people that have been through the whole transplant process. It makes it a little less intimidating!


Cute baby Liam <3


   I will post again tomorrow! I have a feeling I might post again in a little bit because my nurse is kind of ignoring me, but we'll see.. lol Prayers and good thoughts are always welcome and appreciated <3

- Amanda :)

Monday, November 26, 2012

Hospital Stay Day 1


    The first day in the hospital is always the busiest. The first day is the day everyone decides that your room is only open to come in if someone else is already in there. Therefore, everyone come in at the same time. Needless to say, I'm very good at multitasking. Lol. I got at around 2:30 today and I still have not had any meds. Just finished getting my port accessed. I'm not the biggest fan of the nurse I have tonight, but we'll just hope for the best. From the looks of it I'm in for a long night. Talked to one of my doctors a little bit ago and he said right now the plan is just IV antibiotics. And some good lung therapy to get the junk out of my lungs, pretty much the same as always. I don't know exactly how long I'll be here, but I will be on IV for at least two weeks. I got to chat with one of my doctors about what the next step in the transplant process is and he said that he put in a bunch of orders for labs (blood draws, urine test, and whatever else they can take from me). He also has ordered a CT scan of basically my entire body. A ultrasound of my heart, I have to meet with a heart specialist. And when I'm no longer sick, they have to do a test where they go into one of the veins in my neck and go down to test the pressures around my heart to make sure everything there is fine. But that has to wait tell I'm not in the hospital. My mom also asked him when we should expect to start going down to California to meet my doctors/surgeons. He said our trips to California will start by at the latest mid January. So I should be on the transplant list by at the latest beginning of February. So much to take in.. I'm still trying to process it myself. Its scary and exciting all at the same time. I'm excited to be able to look forward to the day I can take a breath without hurting, and to be able to walk without coughing up a lung and needing to sit down and catch my breath. But then again I'm scared because its a HUGE surgery to have. And it comes with a lot of responsibility. Another thing I have to do for the transplant is see a social worker. They have to do an evaluation to see if I'm in a good frame of mind, to see if I have a good support system (which I do)!! Earlier my mom and I got to talk to the social worker a little bit, so she could start her evaluation and what not. She didn't have time to finish today, so she has to come back again tomorrow. 

My ball and chain for the next two weeks...


This time around in the hospital I am not alone in the CF friend department. I will be spending most of my time up here with Addie!!!! Yay!!! I'm happy I get to see her but sad because I have to see her here.. But in the hospital is where I've met lots of my CF friends! I'm happy that I won't be as lonely this time around as I thought I would be this hospital stay. It's weird not having him here to hold my hand and to tell me everything will be okay, while making me smile all at the same time... My aunt Rose and uncle Brian came up to visit earlier and I got to see two of their new little puppies!!! They are SOOOO incredibly cute, I want one so badly! 

Good thoughts and prayers are always welcome and appreciated!! <3

- Amanda :)

Sunday, November 25, 2012

Thanksgiving, This Week, and Brandon

Hello everyone!!

   I wanna start off first by saying Happy belated Thanksgiving!! I hope everyone had a great thanksgiving. I know, I sure did! My family and I went to my aunts house for dinner. The only people there were, my mom, sister, brother, aunt, uncle, my two cousins, my grandpa, and myself. It was a really small quite dinner. The rest of my family that was suppose to come backed out at the last minute and didn't end up coming. But oh well, I got to eat more of the delicious food my aunt had worked so hard to prepare for us :) The only down fall about this thanksgiving is that I'm sick. I've been sick for about a week and a half now. My head hurts, I have a runny nose, sore throat, low grade fever, I'm coughing so much that my stomach muscles hurt, and for the last four or five days I've taken at least a two hour nap. I think it's just a viral thing that's been going around. But when you have CF catching a normal cold that everyone else is over in a few days, means you get it ten times worse, it takes WAY longer to get over, and chances are you're gonna end up in the hospital. And since I've been sick for so long now and I just keep getting worse, I'm caving and hopefully going to see the doctor tomorrow. Which most likely means this is my last day of freedom! I would've gone in today or yesterday for that matter, but it's an impossible task to get admitted on the weekend. And I don't want to sit in the ER for hours on end. If by some miracle I don't get admitted tomorrow (monday) I have a bunch of appointments this week. Monday; my mom and I have a meeting with a social worker to talk about transplant because it's required I guess. Which makes me mad because one; I have a social worker that I already work with and two; the whole reason I'm going to therapy is so I wouldn't have to talk to a social worker. So I'm not really sure why I have to see this lady, but whatever I guess. Tuesday; I have lung rehab. Wednesday; I have a counseling appointment. And on Thursday; I have lung rehab again. The crazy schedule of a CF patient preparing for transplant. Lol :) 

I saw this on Instagram and I really liked it, so I wanted to share <3

   So since Thanksgiving was this last week, all of my friends came home for thanksgiving break! It was so nice to see some of them! I think I hung out with someone everyday this last week. Which could be a contributing factor as to why I'm so tired. Lol. I got to see one of my best friends twice this week!!! The first day I saw her, she took me to one of my appointments I had. How many friends do you have that would take you to a doctors appointment? Not very many!! But I sure do :) I love you Lauren. Then on Saturday, I went over to her house to watch the Civil War game with her and Megan! DUCKS WON!! WOOO!!!! (sorry megan) lol. I also got to see my friend Travis a couple times this last week. I loved that I got to see other friends to, but then again I'm not. I just feel so awkward and out of place when I'm around certain people and they talk about school, the sororities they're in, the parties they go to, and classes they take and anything else pertaining to school. Because I just sit there and awkwardly listen... That's the only sucky thing about seeing some of my friends. I can't wait to possibly experience those things one day! 


  Four years ago today, I lost someone who I loved with every piece of my heart. His name was Brandon Perryman. Like me, Brandon had CF. He was an incredible person, who is missed by many. I met Brandon in the hospital on one of my many hospital stays. And instantly I loved him. I still remember the morning my mom came in and woke me up to tell me Brandon was gone. I just remember crying and crying. One of my very favorite memories I have of him is when we were both in the hospital and I had been texting him. My mom had already fallen asleep and since it was pretty late I was falling asleep to. My door started to open and it was Brandon. He came in really quick and really quietly, gave me a kiss, and told me good night. I will never forget that night. I still have a hard time accepting that he's not with us anymore, but I take comfort in knowing that I will see him again one day. I love and miss you every single day. And will continue to love and miss you every single day, until I see you again. R.I.P Brandon, we all love you <3 

This is Brandon <3


On Brandons 21st birthday I went to see him. This is the picture I took that day.
Hence the Mikes I left in this picture. lol <3

   Depending on what happens tomorrow will determine if I post or not. So no news, is good news! lol 
Prayers and good thoughts are always welcome and very mush so appreciated! Not only for me, but for Brandons family and my cyster Addie, who is currently in the hospital because of her belly. <3

-Amanda :)

Wednesday, November 14, 2012

Delayed Post



   I know I haven't posted in awhile. I'm sorry! I've had something personal happen that has really put me in kind of a daze. And I haven't really felt much like writing or even talking to anyone for that matter. But I'm back now and I'm gonna try to not wait so long in between post again. So last thursday I had a follow up appointment at the doctors that was suppose to happen on tuesday but I couldn't be PFTs because I was so sick from my glucose test. When I was started on IVs in the hospital I think my PFTs were 23% (I'm not positive). And on thursday they were 21%..Not good at all!! I've also started checking my blood sugar since that appointment. I have to check it four hours into my night feeds, which always happens to be after 1am, a hour after I stop my night feeds, and two hours after I have a meal. It's so not fun.. and with what my levels have been I have a pretty good feeling that I will have to start using insulin pretty soon. :( I've always HATED doing my breathing treatments. A reason I've always hated doing them is because they're so time consuming. Well at my doctors appointment my doctor shared with me that, there's a new nebulizer out on the market. It's suppose to take treatments from being 10+ minutes, to at the most 5 minutes!!! SO FREAKING EXCITING!!!!! My doctors office doesn't have them available yet but she's trying her hardest to get them! Every other month I rotate between two different inhaled nebulized medication (Cayston and Tobi). I love Cayston months because I'm done with them in three minutes. But Tobi, takes 20 minutes to do, it taste horrible, and it makes me feel really shitty. So finally after months of begging, I've convinced my doctors to switch me to something else. I'm still waiting for the pharmacy to receive it since it's a special order and only two pharmacy's in the US have it, it takes awhile to get. I also had my first Lung Rehab appointment that day! It was really nice. I'm happy that I get along with my trainer as well as I do. I feel like I can talk to her as more in a friend type of way rather then a doctor or medical personal type of way. I had my second Lung Rehab appointment yesterday, and I'm starting to develop a little routine already. I walk on a treadmill for 20 minutes, ride a bike for 20 minutes and then for the last 10 minutes of my appointment I do some stretches with Megan (my trainer). So far, I'm really liking going to Lung Rehab!! The past few days I've been having really bad belly aches. And when on the nights I hook up to my night feeds, I wake up throughout the night wanting to throw up. Therefore, I haven't really been eating all that much and I've lost five pounds in the last month or so. If I don't gain back my weight before I got see one of my doctors, I'm for sure gonna be yelled at for losing weight. When I get upset the first thing I do is stop eating. And I know, I should eat. I hear it from everyone. But it's so hard to eat when you're upset and you have a constant pit in your stomach that makes you wanna throw up. I know for a fact everyone understands that feeling. IT SUCKS!!!!!  I think from being so upset and stressed out, that I've made myself sick. I'm feeling kind of shitty the last couple days. 
Something I really liked and related to 100%!!

     Since I've been so upset, last weekend I decided I needed to get out of town. So I drove down to Eugene to see one of my best friends Lauren :) It was such a nice escape!! I didn't realize how much I missed her until I was down there with her! Being able to just get in my car and just drive to her, was really wonderful! I definitely needed to get out of town for a few days! And in another attempt to keep myself busy, I had a girls night last night with a few friends from high school (Kaylin, Bree, and Juli) that I hadn't hung out with in awhile. We sat and talked, watched movies, and ate a butt load of candy my friend Alli sent me in my care package (picture below)!! I had a great time! I just hope that we will be able to continue having a girls night every week :) I'm sure I'm forgetting to write something, so I may write another post after my counseling appointment! 

My care package, to help heal my broken heart <3


"Love is patient and kind; It is not jealous or conceited or proud; Love it not ill-mannered or selfish or irritable; Love does not keep a record of wrongs; Love is not happy with evil, but is happy with the truth. Love never gives up; and its faith, hope, and patience never fail." <3

Prayer and good thoughts are always welcome and greatly appreciated <3

-Amanda :) 

Wednesday, November 7, 2012

Tuesdays Appointment



    I had an appointment on tuesday. I was going in to see if I could come off of IVs or not. And I DID!!! It's so nice to finally be free from an IV. Not having to worry about what time I have to do my antibiotics and what not. Also, while I was at the doctors I had to do a glucose tolerance test to see if I have CFRD (Cystic Fibrosis Related Diabetes). In order to do this test you have to fast (not eat) at least 10 hours before hand. Well my appointment was at 2 in the afternoon and I wanted to do my test before hand. So we got there at about 1 or so. I went to the lab, they took blood and we had to wait for the results to come back before I could drink this disgusting concoction of sugar and whatever else, it took a half an hour to get those results... So by this time I hadn't had anything to eat in 14 ish hours. Just so you all know, if I don't eat, I become VERY VERY crabby. I start feeling like shit, I look like shit, I'm dizzy, no energy, I get super nauseous, and I feel like I'm gonna pass out. I finally got to drink the stuff I had to drink, which made my nauseousness ten times worse. After I finished drinking it we had to wait two hours before they took my blood again. During those two long hours of waiting, I had my doctors appointment, and I got my port de-accessed!!! By the time I went back to the lab it was about 4pm, making it 17 hours since I've had something to eat. I felt like death :( It sucked sooo much. My poor mom and Aaron had to put up with cranky Amanda all day long yesterday. I'm not to sure how they did it, but I love them for it :) Thank you both! I think we finally ended up getting home around 5pm ish or so. I was extremely ready to be home!

    Today, my mom being my mom couldn't wait for my doctors appointment that I have tomorrow (I'm going back tomorrow because I didn't do PFTs yesterday) to find out what the glucose test revealed. And it turns out that I do have diabetes.. Which isn't something I'm surprised about, I've had the feeling I've had diabetes for awhile now. But it was just confirmed today. So tomorrow, we're taking about what I have to do and everything that diabetes entails. Diabetes is very common among CF patients. Almost all of us have it or will develop it in our lifetime. It just sucks that I have it now. Just yet another thing I have to now worry about. GRRR!!!! 


^ My new sidekick...grr (my new blood sugar meter)

    On a good note, I finally got to meet my cyster Addie today! She's incredible. My mom and I went to lunch with her today. We got the chance to ask her a bunch of questions we have about transplant, seeing as how she's been through it. It was an amazing lunch. She's such an inspiration to me! Before I met her, I wasn't sure if I wanted to get a transplant but seeing how successful she has been with her transplant, has really changed my mind about it. I could've sat and talked to her all day long. She is definitely someone I know I will be close with for the rest of my life! I love her <3 Next wednesday, my mom and I are going to a donor breakfast with her and her mom. It's a breakfast and most everyone who attends has had an organ transplant of some kind. And people who are thinking about getting a transplant. I'm pretty excited!! 

    After my appointment tomorrow I will post an update! Prayers and good thoughts are always welcome and right now are very appreciated!!
- Amanda :) 



Monday, November 5, 2012

Thank you


Hi everyone!!

     Not much to report health wise! I have a doctors appointment tomorrow. And if everything goes as planned I'm suppose to be done with IVs!!! I'm starting to feel kind sick again, but this starts to happen when I've been on IVs to long. My body can only handle being on IV antibiotics for so long before they start having an adverse affect. I really hope it turns out that way because I'm done being on IVs. I would love to be able to take a shower and not have to worry about getting my bandage wet. Anyone who has a port knows how annoying it is to shower when you're port is accessed. Along with the doctors appointment tomorrow, I also have to do my glucose tolerance test. Which is something I should have done months ago, but never got around to it. With all my medications I take also adds another problem because I'm not allowed to eat 10 hours before I do the test. But yet, I have to take medicines when I wake up, that require me to eat food when taking them. It's a double edge sword. I talked to my doctor about this the other day and he said to eat something VERY small and something without any sugar  so I can take my meds. Today, we had a lady come to our apartment to re access how many hours my mom could get for being my caregiver. Right now, she isn't getting paid for half of the time she's helping me. So we're hoping that we'll be able to get more hours!!  

     On a side note, I was looking at the stats of my blog. Such as, seeing how many people overall have viewed my page, views today, how people are viewing it, and what countries they are in. Well as of right now, I have has 4,314 views overall. And I've had people from Russia, Germany, United Kingdom, Italy, Australia, South Korea, New Zealand, and of course the United States!! That's SOOO crazy!! I couldn't be more thrilled about the attention my blog is getting and how successful it's being in spreading awareness for CF! Absolutely incredible! The support of my readers is overwhelming! Thank you all for reading and sharing my story, my story wouldn't be heard if it wasn't for you all!! So once again, THANK YOU!!! Please continue to read, share and spread awareness for CF!!! We need to find a cure for this vicious disease. 

I will post tomorrow after my doctors appointment. Prayers and good thoughts are always welcome!! <3

- Amanda :)