Monday, October 29, 2012

Home sweet home

     I can't even begin to describe how happy I am to be home!!! I'm so excited that I get to sleep in my own bed tonight!!! Oh how I've missed my bed... and of course sleeping next to my love! Along with the craziness, loudness, and laughter that happens at home. There's nothing better than listening to my family laugh! I got home today around 11 ish. In my opinion the worst part about coming home from the hospital is unpacking...I strongly dislike unpacking. 95% of the time my bags will sit for at least a week before I get tired of looking at them. But not this time, I unpacked all my stuff, washed my bedding/made my bed, and did a load of laundry! Very productive if I do say so myself :) I met with my nurse at about 2:30 today. It's a routine visit that they have to do every single time I start home IVs. It's the most annoying thing in the world. They have to come and "teach" me how to do my IVs and go over all my meds and what not. When in all honesty, I could teach them how to do it, and I actually have a time or two. Luckily the nurse that came today was one of my favorites!! I'm really happy with the methods my IVs are having to be given, because they are SUPER easy. I will be on home IVs tell November 6th. One of my antibiotics is every 8 hours in the form of an intermate (picture below) and the other is every 24 hours in the form of a syringe push (picture below)! I'm feeling kind of better than I was when I was first admitted, but nowhere near where I want to be. I have the feeling though that the way I'm feeling is going to be my new "normal." :/ Since deciding I want to receive a transplant my doctor has started putting in referrals for a lot of different things, such as, going to see an ENT (ear nose and throat) doctor, a program called "lung rehab" which teach me how to get the best breathing with the lungs I have and it will also help get me into shape, once I start that I will be going at least three times a week, I have a bunch of different test I have to go through. It's so much to process. All the information and preparing for all the appointments and what not, is starting to become kind of overwhelming. I will be posting a lot of blogs within the next few months, so please continue to read. It means the world to me that I have so many people that read this. Thank you all!  

Intermate every 24 (left), the balloon slowly infuses and shrinks over an hour.
Syringe every 8 (right), I slowly push in over the course of five minutes.

I may be posting again tonight because I feel like I forgot to add something to this post, but I'm not exactly sure. Prayers and good thoughts are welcome and very much so appreciated!!!

- Amanda :)

Sunday, October 28, 2012

Hospital Stay Day 5: Feeling left out

     It is day five in the hospital and for the first time since I've been here I received some good news. I get to go home TOMORROW!!!!!! YAYAYAYA!! Of course I have to go home on IV but I couldn't be happier about getting to leave, after the few horrible days/nights we've had. I'm feeling a lot better than I was when I was first admitted. I have my fingers crossed that at the end of this two week antibiotic course, my lungs will have come up a little bit. I got weighed today and after being on Lipids (pure fat, infused through my IV) and my night feeds for the last five day, I have gained absolutely no weight. Lol. Last night was an okay night, got everything I needed in a timely manner. And got to sleep semi early (10:30 ish). I forgot to mention the other night I had to sleep with an oxygen stat monitor on my finger all night to see if my stats were dropping when I slept. If that was the case, I would have to start using oxygen when I sleep. But fortunately that's not the case and everything came back perfectly fine!!!

My ball and chain... a.k.a the stat monitor I had to sleep with for a night

     Today, has been a pretty boring, uneventful day. Aaron and I just hung out and watched Four Weddings all day long :) He must love me because he puts up with all my silly shows I like to watch. When my doctor came in today, he finally gave me the results of the CT scan of sinuses. For the most part he said they look fine, pretty normal for a CF patient. But because I'm on my way to getting a transplant, I have to keep my sinuses in tip-top shape so I now have to do regular sinus rinses. BOOOO :( I HATE putting things up my nose. It's quite possibly the worst thing in the entire world to me. Pure torture!!


     The last few days I've been having a really hard time being here. I feel so incredibly left out. Everyone's been posting pictures of Halloween parties and their cute costumes, and I'm stuck here in the hospital fighting for my life. People don't realize how lucky and how good they have it. I would give anything to have my biggest problem right now being what I wanted to be for Halloween.. I wish, I could go out and enjoy being 19.. Go to parties, school, living in a dorm or my own apartment, have a job, just be normal, even if just for a day. Don't get my wrong, I'm thankful for what I have and that I woke up today and got to breathe another day. I hope you all have a wonderful and safe Halloween, think of me when you're out having a good time :) 

It's time for me to start packing and getting everything ready to go home tomorrow! The sooner I pack, the sooner I go to bed, the sooner I'm home!!!! :) Prayers and good thoughts are always welcome and appreciated!

- Amanda :)

Saturday, October 27, 2012

Hospital Stay Day 4: Ready to leave

     Last night was such a horrible night, I'm so ready to leave. I had a good day yesterday, everything went pretty well, until shift change.. At around 7:30pm I got introduced to my night nurse, I asked if she would please bring in all my night stuff after they finished giving report, so that I could go to bed early because I was tired. She said that she was getting a new patient and that she would be in when she could. Around 8:45pm my CNA comes in to take my vitals and I ask her to find/let my nurse know I'm ready for bed and I would like my medicines. 9 o'clock rolls around and still no nurse. So I page, my CNA comes back in and I ask her if  she could please let my nurse know I want pain meds. And if that's all I could get for now, that would be fine. It is now 10 (I asked for pain meds an hour ago)... My mom walks down to the nurses station and finds someone to basically yell at. Five minutes later someone comes down to my room and says my nurse will be down here in five minutes. So finally my nurse shows up. Telling me that she had to get her new patient settled in before she could deal with me because I wasn't as important as her other patient.. My antibiotic was two hours late. She forgot half my medicine, doesn't have all the right stuff to hook me up to my night feeds, and is very rude. She ended up dropping one of my pills, so we had to turn on all the lights, we had to move my bed and the chair my mom sleeps in to find it. Once she got my night feed bag hung, it ended up having a hole in it, so we had to get a new one of those from the cafeteria... It was just a huge fiasco. I didn't end up going to sleep until 12:30... I will be talking to my doctor about this today. This is exactly why I didn't want to come in. Every time I'm here something like this happens. I did PFTs this morning (at bedside, with a portable machine) and this machine isn't really a reliable source of information but from what it said, my lungs are the exact same as when I got admitted (not good) they should be better by now. And also, this morning I had to have a blood gas test done. And the way they test it is by sticking a needle into the artery in my wrist and taking a blood sample. The respiratory therapist that was doing it today, missed the first time, so he had to do it a second time, and the second time he hit a nerve in my wrist (which hurt like hell) and to top it all off they might have to do it again... Needless to say, I'M READY TO GO HOME!!!!

On a good note, I may have visitors today! I'm really hoping that my cyster Addie comes to visit today. We've never met, but just by talking to her I feel so close to her <3

I'll keep this updated!
- Amanda :)

The Spoon Theory

    One of my Cysters posted this on Facebook today and it really touched my heart because I can relate to this in every way. I know this is really long, and the beginning is kind of boring/slow but please read this whole thing. This is how I'm gonna start explaining my life to everyone who has any questions about living with CF. 

The Spoon Theory
by Christine Miserandino

     "My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons"."

- Amanda :)

Friday, October 26, 2012

HSD3: Ridiculous

    Around 7:30 I was introduced to my night nurse, upon meeting her I asked her if she could come back in after they were done giving report (a report on all their patients they were getting passed down for the night) because I was tired. She said okay, but she was getting an admit (a new patient) so after she was done with that she would come in. At about 8:45 ish my CNA (certified nursing assistant) comes in to take my vitals and I ask her to let my nurse know I am ready for bed. Well 9 o'clock rolls around, I haven't seen or heard from my nurse. I page and ask for some pain meds because my lungs are hurting pretty badly. My CNA comes in and says that she'll let my nurse know. Five minutes later she comes back and says my nurse is busy with her other patient and that it would be 10-15 minutes.... It's been a good hour and still no pain meds, no nothing. I don't think words can describe how mad I am right now. Thank you Kaiser nursing staff for neglecting my care once again. This is a prime example as to why I HATE coming in here. I hate having to wait on people to bring me things I need. It's not like I'm asking for something that isn't necessary.. I'm asking for my nightly meds/ pain meds. It's absolutely ridiculous that I've been wait for three hours for something and that I have to ask for it more than once.  I just needed to vent about how extremely frustrated I am... I'm done being here. What do you all think? Am I overreacting or do you agree?

- Amanda :)

Hospital Stay Day 3: It's starting

     Today is day three in the hospital. Yesterday was a very eventful day. The procedure I had to go through yesterday went VERY well. They made a small incision in my groin and stuck a wire type thing all the way up into my neck through a vein and then hooked the wire around my port to pull it back to where it was suppose to be. During this procedure they gave me medicine that made me extremely tired and kind of out of it. I apparently had visitors from Aarons mom, Shelli, and our family friend Sue and two of her kids that I vaguely remember.. I wish I wouldn't have had visitors come up after my procedure, so I ask if you plan on coming to visit please make sure it's okay with my mom or I BEFORE you come up. I absolutely love to have visitors but I also like to remember the conversations we have. Lol :) My night was okay, I had a nurse I don't particularly like but what can you do, she of course let my freaking machine beep all night long... So I didn't really get good rest. Today, I have one of my favorite nurses taking care of my today. I love when I have a nurse I like, I love being able to catch up with them and share stories about what's been going on in our lives. Having a nurse I like makes it so much easier being here because I can just relax and trust that everything's gonna be okay and I don't have to worry about anything. We just got done talking to Dr. Walter (one of my pulmonolgist) about transplant. And as of today, I have officially started the process to getting a transplant. Which means I will be going through a bunch of test and having LOTS of doctors appointments. I have to have a blood gas test done tomorrow morning (probably around 6-7am) which is when they stick a long needle into my artery that's in my wrist. It hurts like hell. I'm so not excited to wake up to that tomorrow. :/ After my hospital stay I will also be starting something called "Lung Rehab" where I will be learning how to breathe right, and it will help me get into the best shape I possibly can be!! I'm kind of excited about that!!!! I also have to do a blood glucose test after I get out of the hospital to see if I have CFRD (Cystic Fibrosis Related Diabetes). 

       This is such a huge step, I'm so terrified. If it wasn't for the love and support from my family and close friends I wouldn't have the strength to do this. It wouldn't have even been an option for me. I'm not only choosing to do this for myself, but I'm also doing this for them to. This is gonna be a long, scary and painful process but I want to do it, I'm ready to do it. I'm doing this for my mom, my dad, my brother, my sister, my boyfriend, my aunts, my uncles, my cousins, my best friends, my soph dog, my grandparents, everyone who I hold very close to my heart. Thank you all for being here for me!

I'll post again later. Prayers and good thoughts are always appreciated <3

- Amanda :)

Thursday, October 25, 2012

Hospital Stay Day 2: Is this really happening? (Picture)

This is my port ^
The triangle part of this is where they stick the needle in to. And the long line attached to it is threaded through one of my veins to my heart. The end of the line is no longer where it's suppose to be so now they have to go back in and make it right. I will be mildly sedated while they do this. Pretty sure my day can't get any worse. 

Hospital Stay Day 2: Is this really happening?

     My first night in the hospital was alright. Everything went pretty smoothly, with the exception of my port not drawing back blood very well, when it should be working fine. I still have a bad headache, coughing a lot, lungs hurt really bad, can't breathe, pretty much the usual..This morning everyone decided to come in at once of course. I'm the type of person that likes to be left alone when I'm trying to wake up, so the fact that everyone comes in at once so early in the morning really makes me unhappy. On top of everyone coming in this morning, I was informed that the x-ray I got last night of my lungs, showed that the line from my port is not in the right place anymore. After surgery it was in the right spot but its somehow moved. So I have to go to radiology in order for them to fix it. I will be mildly sedated. Words cannot describe how upset I am about this. I just wish for once something would go as planned, I wish I wouldn't have to continue jumping through all these stupid hoops. I just want a damn break!!! Is that so much to ask for? As of an hour ago, I'm not able to eat or drink anything until further notice. And I have to get a peripheral IV put in my arm because I can't use my port until its fixed. At least I have my parent here with me! I don't know what I would do without them :) 

     Aaron will be here in a little bit, I'm excited to see him! He will always be the lucky person that's gonna be sleeping in the chair next to me tonight :) lol.

 First night in the hospital and first time my port has been accessed

     I will post again later to update everyone on what happens! Prayers and good thoughts are always appreciate <3

- Amanda :)

Wednesday, October 24, 2012

Hospital Stay Day 1

Hey everyone!

I had a doctors appointment today and sadly, after much refusal I got admitted to the hospital. Before I surrendered to the hospital, I had to get one last fix from dutch. Thank you Bree for giving me my drink for free, that act of kindness really made my day. Love you! I just got to my room. The first night in the hospital is always the funnest..NOT!!! It's filled with a bunch of people coming in and out of my room, asking me the same questions over and over again. It gets old really fast. Trying to get all my orders right is always such a task as well. Because the doctor enters everything into the computer one way, but in the computer it gets entered a different way, and the pharmacy only does it this way, it's so annoying. Typically the first night I'm here, I don't get all of my nightly medicines because apparently it's hard to understand that I take all my meds at night. My absolute least favorite part of being admitted is getting my port accessed. There's just nothing fun about getting a 1 inch needle stuck into my chest and left there for a week. It's just not a good time. But I'm kinda nervous because I haven't used my new port yet so all fingers crossed that it works and we have no problems!! I'll keep this updated! I'm gonna be on a continuous IV antibiotic. Ugh I hate when I have to be on a continuous one. Back to my doctors appointment today, I went in not feeling well and very reluctant to go in because I knew this would be the end result, but my mom said other wise. My weight is down to 108 (I'm normally 110, but my doctors would like me to be 120). My PFTs have been pretty sucky, when I'm sick they've been ranging from 23%-25% and when I'm healthy 32%-35%. Well today mine were 25%, which is 2% up from when I did them three weeks ago. My PFTs should be better than they are because I just ended a three week course of antibiotics. Which is part of the reason I'm here. Well, I have just got back from getting an x-ray and a CT scan. The x-ray was of my lungs, pretty routine. And the CT scan was to look at my sinuses. When I hear about from what they show I'll post! This hospital stay will decide how fast I will go through the transplant process. 

Prayers and good thoughts are very much so appreciated. I'll keep this updated as much as I can!

- Amanda :)

Monday, October 22, 2012


GRRRR!!!!! I'm so frustrated!!! So I'm sure most of you have heard of the Make-a-Wish foundation, well the Children's Cancer Association does the same kind of thing for caner patients and people with CF. I've had friends do both of them. Today I emailed the lady at the cancer association about me being able to make a wish and this is the email I got back:

 " Hi Amanda,
Thanks for contacting me about a wish.  We can offer assistance to teens receiving treatment in a pediatric setting.  From what I understand, you have Kaiser insurance and are not being treated in a pediatric setting so do not fall within our criteria.  I’m sorry.
I hope you were able to enjoy a Make-A-Wish when you were younger.

ARE YOU SERIOUS?!?!?!?! Because I was forced to switch hospitals when I turned 18, means I can't make a wish. Mind you, I still see all of the same doctors I've seen my entire life, a "pediatric" doctor. It's not my fault my doctors and insurance made me switch hospitals. I'm so freakin annoyed.... I was gonna wish for a car or at least get some help getting a car. UGH!!!!

Anyways, I'm done ranting about that. I have two doctors appointments this week, tomorrow and wednesday. Tomorrow is a post-op appointment with my surgeon just to see how I'm healing up and what not. And on wednesday I have a therapy appointment. I  have to go through therapy in order to be considered for a transplant. My mom and I also have an appointment with the assistant dean of the college, because ever since I started school I've had nothing but issues. So we're finally gonna get some help..hopefully.

I found a quote today that I really love and that is perfect for what's going to be happening "The day before your life changes forever.. feels just like any other day, so you never know when it's coming ♥" 

I'll post tomorrow after my appointment!
- Amanda :)

Thursday, October 18, 2012


     First off I would like to say wow, so many people have been viewing/reading/sharing my blog. Which is absolutely AMAZING!! Every time someone clicks on the link to my blog it's one more person that learns about CF. Raising awareness for CF is exactly what I wanted to do by writing my blog. Since my last post, my page views has basically doubled and is now at 2798. That's just incredible to me, thank you all for your support :) I can't even begin to describe how much that means to me. Anyways, today my mommy and I went and got our hair done (picture below) at my aunts salon (Strut Salon ). I love going to see my aunt tamra, she always puts a smile on my face. She's technically not my "aunt" but my mom and her have been friends since they were in high school, so for all intensive purposes she is. I love hearing all the stories she has about my mom when they were younger. And I always leave her salon with a smile on my face because she does such a wonderful job every time :) I was pretty worn out after I got my hair done, everything I do lately, even if it's something simple like taking a shower, just completely kicks my ass and I take at least an hour nap after I'm done. Today I haven't been able to walk a foot without coughing up a lung. It's little things like that, that makes me realize how sick I'm actually getting. It breaks my heart. I would do anything to be able to take a deep breath. But all I can do is just keep pushing forward and not let my disease get the best of me <3

     On a side note, one of my Cysters sent this to me the other day and I wanted to share it with all of you. It really touched my heart but I think it's because it's exactly how I've been feeling lately! Let me know what you think of it!

"First I want you to know that you are not alone – I will be with you every day.
At first, you will ask yourself why did you have to make me a part of your life.
I know that you will talk about me to your family & friends & your words will not always be kind. I understand the burden I have placed on you.
I will be the cause of some of your darkest moments but at times, also give you hope. I hope you will celebrate the small milestones that we achieve, together.
I will require a great deal of your time & I admit that I need a lot of attention. I don’t mean to consume your life & make it all about “me” – but that just is the way it is.
I am going to need small favors from those who know & love you because they will have to help you help me.
There will be times that I embarrass you & make you self conscious – that is not my intention. I hope you will use those moments to let yourself shine.
I realize there are times where you would like to leave me behind – if only for one day. I am sorry but that is not an option . . even when you take a vacation – I won’t.
I will be a constant reminder of the word commitment & I will try to force you into giving up – but don’t. I want you to prove to me that quitting is never an option.
I know there is a part of you which blames me for the worst days of your life. I can understand your resentment of me at times.
And, as some will try to separate us forever because they think it is best for you – there is a small part of you that believes I have made you what you are . . .
That I have been the reason you appreciate every sunrise, every hug, every laugh & every day that I am still with you.
I am your disease, I am your disability, I am what makes you strong"

- Amanda :)

Tuesday, October 16, 2012

Starting my process to a new life

Hey everyone,

     I had a doctors appointment today, not because I'm sick or anything but because I'm getting a new primary doctor. It was basically a big meeting with five of my doctors, a social worker, and a pulmonologist. It was a meeting for everyone just to touch base and discuss everything. I was scared and nervous from the moment I made this appointment a few weeks ago and today I proved myself right, that I had every reason to be scared and nervous. My doctors told me that it's about that time I start going through all the necessary steps for a transplant. Words I've dreading hearing my entire life. Words that absolutely terrify me. Words that no matter how much I've been prepared to hear, doesn't make it any better. The next time I get sick is gonna determine if I get put on "the list" or not, which will probably be by the end of the year. If I get sick and stay sick after two weeks of antibiotics and my lungs don't bounce back like they should, then that's when I start my process to a new life. I'm scared, terrified, nervous, anxious, uneasy, excited, hopefully and many other things. But before I even start the process of transplant, I have to decide on if I even want to have one or not. Something I have not yet decided. What would you choose? Living; but taking a hundred new medications, monthly procedures to see if your lungs are okay, risk of failure, being able to actually take a breathe in, walk the mall, getting to be with family/friends for a little bit longer, getting a second chance to re-live your entire. I've heard this from multiple people "getting a transplant is like trading one disease for another." And it couldn't be more true. Or just accepting that it's time and that I no longer has to suffer. 

Melissa and Lauren: I just got off the phone with my two best friends in the whole world. And it was quite possibly the hardest thing I've ever had to do. I had been okay up until that point. But hearing the heartbreak, love, concern, sympathy, and just overall sadness in their voice completely breaks my heart. I always try to protect them from as much as I can from everything that goes on with me health wise but something this major I had to tell them. I'm so lucky to have not one but two best friends that care and love me so much. Lauren and Melissa have been my rocks through everything I've ever been through. Nothing I do or say could ever repay them for the amazing things they've done for me. I love both of them with every piece of my heart and soul. Thank you both for ALWAYS being by my side <3

My family: Mom, dad, sister, brother, grandma, aunt kay, aunt tamra, aaron, shelli, jeff. Words can't even begin to explain how grateful I am to have every single one of you in my life. Without you guys I wouldn't be the strong person I am today. Mom, you out of everyone you are the one I get my strength from. I would've given up a long time ago if I didn't have you standing beside me every step of the way, I wouldn't be here. I love you. I love all of you so much.

As the transplant process starts I will keep this updated as much as I possibly can. But forgive me if there's a few days in between each post. Please send prayer and good thoughts my way. I could really use them right now. I need strength for this fight I'm about to go through. Thank you.

-Amanda :)

Monday, October 15, 2012

Keep calm and just breathe

     Over the last few days I've came across some really interesting pictures that I would like to share with all of you. As most/if not all of you know I have Cystic Fibrosis. Which means I have a lot of sticky mucus that I can't cough up, which makes it difficult to breathe. Which brings me to my first picture!

The cloudy white stuff you see in the CF lungs is mucus. A.K.A the reason we can't breathe. 
I would give anything to have "normal" lungs, even if it were just for a day.

     People that don't have CF, when they get a cold or the flu or anything of the sort, they are able to cough up the mucus that's in the lungs. Once you've coughed up the mucus from being sick, your breathing returns to normal. Well in that short couple days that you're sick and can't breathe is how I breathe everyday of my life.

I want everyone to try this! Then comment and let me know what you thought/felt while doing it.

The picture above I took from one of my cysters, she posted it on facebook. Never in my life have I ever found and read something that is dead on about my life and how I feel. I completely fell in love with this!

     I often find myself taking on way more than I can handle and I don't realize I do it until it's to late. Between school, doctors appointments, taking care of myself (health wise), helping around the house, and running random errands. I just break down after awhile. When I get stressed, I make myself sick, which most of the time ends in a hospital stay. All I want is to be "normal." I want to be a 19 year-old college girl, that goes to class, lives in a dorm/my own apartment, be in a sorority, have my own car, have job. It's so hard to watch all my friends at college, knowing I can't be there. Dropping my classes was so hard for me to do this term, I love school but I know I just couldn't do it this term. So, all of this rambling is leading me into the picture below. I need to learn how to do this "Sometimes it's okay if the only thing you did today was breathe" From now on, wherever I start feeling down, I'm gonna remember this and start living by it.

     Tomorrow I have a doctors appointment. It's a follow up appointment to see how I'm doing after my IVs. I get to see about 6 or 7 different people tomorrow, and I think I'm meeting my new doctor. Yay....NOT!!! After my appointment I will post to let every know how it went. Good thoughts and prayer are appreciated :)

- Amanda :)

Thursday, October 11, 2012

Surgery Pictures

Top picture:
 The gross looking bandage is where my new port was placed and the one on the left is where it was.
Bottom picture: Is where my IV was placed. (That got taken out today)
Picture to the right: If you look at the top picture you can see a bandage on my neck. It's just a closer view.

Good news, I got to come off IV today!!!!! I had a home infusion nurse come to my house today because they needed to get some routine labs. Talked to my doctor and my doctor decided that I could be done today!!!! I'm so happy, I feel so free. It's such an amazing feeling :)

- Amanda :)

Post Surgery


Surgery went really well, no complications whatsoever. It took about two and half hours which is a little bit longer than we expected but that's okay! The PICC I had in my arm had to be removed during surgery because it was in the way of them placing my new port. So I now have a peripheral IV in my hand (picture blow). Which I hate because they hurt and don't last very long. And during surgery they had my neck placed on one side the entire time, so now I can't move my neck. Once I got home (11:30 am), I literally slept all day the rest of that day. And I also slept all day yesterday. With the exception of going to get my hair washed at my grandmas salon, seeing as how I can't shower right now because I can't get my badges wet. Today is day two post surgery, and I am still in a huge amount of pain. I feel like someone took a big metal rod and hit me in the middle of my chest. That's how bad this pain is. I feel so broken right now lol. On a good note, as of tomorrow I will be done with home IV!!!! I'm so excited!!!

^ IV

^ My battle wounds
Then one on my neck is where they went in at. 

I am so thankful for the support system I have, especially from my mom and boyfriend. They have been so wonderful to me the last few days. I don't know what I would do without either of them. The best feeling in the world is feeling that people actually love and care about you. And not only do I feel I get that from my mom and boyfriend, but I get that from everyone I'm surrounded with. Whether it's my sister, brother, dad, grandma, and my boyfriends family. I love you all so very much. You guys mean everything to me. Thank you for all you've ever done <3

- Amanda :)

Monday, October 8, 2012

Surgery change

     My surgery was originally scheduled for 12:30 pm. The reason I scheduled it for this time is because I wanted my boyfriend to be able to come with me. But seeing as how he has class from 8-11:20 on Tuesdays and Thursdays, he won't be able to come with me. I really wish kaiser and/or the person in charge of the scheduling would've told me they had changed my surgery time before I had already told my family when to be there. Awesome, right? Way to be considerate kaiser...I've had so many problems with the care I've been receiving  from kaiser the last two years, I'm so fed up with it. Anyways, I'm just writing this blog to let everyone know that my surgery time has been changed to 7:30 am tomorrow morning. I'm really really nervous.

     Please send good thought and prayers my way that time tomorrow morning, I would really appreciate it!!! Thank you all for your love and support, it's what keeps me going <3

- Amanda :)

Saturday, October 6, 2012

Hard decisions

Hey all,

     As you all know I have been struggling and doing everything I possibly can to stay in school. We're going on week three in the school year and I still have not received my financial aid check. At the end of the second or third week (I'm not sure which one) you have to pay for your classes and if you don't they charge you extra. Since I haven't received my financial aid chick, I've been unable to buy any of my books I need and I haven't payed for my classes either. I went and talked to the financial aid people at my school and they basically told me I was S.O.L because I was only in week five out of a maximum twelve week wait... But not to worry because I could apply for a short term loan.. Right after I finished talking to them, I went and filled out the papers for the short term loan. And the lady working that the desk was a HUGE bitch and told me I also needed, this, this and this to apply but I couldn't do it today because she closed in three minutes. AWESOME....NOT!!! I was not happy. After everything is said and done, assuming I would get my loan approved right away (on monday), I will be a full two weeks behind in one of the classes, because I haven't even had the money to buy my books that I need. So I've sadly had to drop all of my classes. I'm having surgery on Tuesday, October 9th to have my port replaced. And having surgery means having to miss school, and by the time I would be able to return to school, I would be to far behind to catch up. I'm extremely sad and I couldn't be more disappointed that I have to drop my classes this term but I know it's the best decision for me in the long run. Going to school is something I thrive to do, I think it's because it gives me a sense of normality. UGH!!!!

A couple side notes:  
     My wonderful boyfriend Aaron just got a new job!! I'm so proud of him! He's my rock, I don't know what I would do without him. I honestly never thought I could and/or would find someone this amazing. When he tells me he loves me, I know that he truly means it, and there's nothing more meaningful in life than knowing someone truly loves you. 
     On october 3rd, we all celebrated my mommys birthday!!! Aaron, Ashley and I all cleaned the entire house for her and I bought her nice new pretty bedding :) Which she loved!! I love being able to find a way to show the women that means most to me and that has given me everything in life, that I love her, even if  it's something simple like getting her new bedding. I love you mama!!
     I got to have lunch with one of my cysters the other day. It was so nice to see her. She and her boyfriend Ben are going through some extremely tough times right now. Ben was severely injured in a diving accident and is now having to learn to live life in a whole new way. I don't know how daelee is doing what she's been doing. Even though daelee have CF and faces health problems every day of her life, she has not once left Bens side. I'm amazed by her strength that she's continued to have over the last month or so. I love you and Ben both. You guys are always in my thoughts and prayers <3
     I went to the doctors last Tuesday (October 2nd) and everything went really well. I'm feeling a whole lot better than I did when I started IVs. My weight is up, my lungs are sounding better! All positive signs :) however, since I'm having surgery this coming Tuesday my doctors have decided to keep me on IVs a full three weeks, instead of two, just to be safe. It sucks, but it's most likely a good idea considering it took me four months to recover from my last surgery I had. Granted though, my last surgery was a lot more major than the one I'm about to have. 

I will try to keep this updated as much as I can the days following after my surgery but no promises! Please send me good thoughts and prayers on Tuesday around 12:30pm!!! Thank you!

- Amanda :)

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