Wednesday, August 29, 2012
I've had a few people ask me about what's happening/going to happen with my appendix. My mom talked to my primary doctor (who has taken care of me since I was two months old) and he looked over everything (blood test, CT scan) and he thinks that everything looks fine. My organs are just adjusting since my gallbladder is no longer there. So for right now, they aren't going to do anything with my appendix. But if the pain continues, then we'll look into it deeper! Also, since I got my vitiman k shot yesterday, I haven't coughed up any more blood and I'm feeling A LOT better!! Yay!!! But on the other hand, I can't walk because my hip hurts SOOO bad!!!
I started yoga again this week! It completely kicked my butt! I had started doing yoga at the begining of the year, but ever since april, I've been sick and unable to do it. It's a class I take at my gym, monday and wednesdays. I love it!!! And I'm lucky enough to be taking it with a long time family friend :) I don't think I would love it as much, if I had to take it by myself.
I'll keep everyone updated of whats going on! Thank you to everyone who reads my blog, it means a lot to me. And I'm glad that I'm raising awareness for CF!! Please feel free to share the link to my blog :)
CALIFORNIA COUNTDOWN - 9 DAYS!!!!
- Amanda :)
Tuesday, August 28, 2012
I had a horrible night last night, to start off I was alone until about 2:30 am. Never in my life have I ever stayed at my house alone at night, there's always been someone home. At about 4:00 am, I woke up feeling a coughing fit coming on, along with some fluid moving around in my lungs. So naturally I ran to the bathroom to spit up whatever I was feeling/coughing up. It was blood. It happened about five-ten times. I was happy that Aaron had decided to come home from his friends house, instead of staying the night because I would've been by myself, had he not. :( After my coughing attack, I had a hard time falling back to sleep, but I finally did. Once I finally woke up again, I had yet another coughing fit, resulting in me coughing up more blood. With in the last week, I've had two bloody noses, and now I'm coughing up blood. Ever since I got my bloody noses, I thought my vitiman K (blood clotting vitiman) was low. And I even said something to my doctors but they didn't listen to me. I called my doctor today and told her what was going on and that I had been coughing up blood throughout the night and she finally listened to me and gave me a vitiman k shot. I'm hoping this shot was worth it, because if it doesn't work I'm scared I may not be able to go to california. And that I'll be in the hospital instead :/ Only time will tell though. I've just been taking it easy today and not doing hardly anything!! My kind of day!!!
Within the last two days I have been stuck with 5 different needles. The only type of shots I like, come in a small glass! :) lol
1. A shot of pain meds, that went in my hip.
2. Blood draw for some labs, in my arm.
3. IV in my arm for my CT scan.
4. A shot of vitiman K, in my arm.
5. A pneumoniae shot, in my hip.
Please keep your fingers crossed that this shot works. Good thoughts are also always welcome!!!
CALIFORNIA COUNTDOWN - 10 DAYS!!!!
- Amanda :)
Sunday, August 26, 2012
Got home from the hospital about an hour or so ago. For my CT scan, I had to drink this contrast stuff so that they could see into my belly. It tasted like really tart lemonade, it wasn't horrible but it wasn't good. I drank so much of it I felt like I was gonna throw up. The CT scan showed that my appendix is larger than normal, but that's all it showed. The doctor that looked at my CT scan wasn't any help to me at all. All she told me was "Your appendix is larger than normal. So I want you to have a follow up appointment with your doctor (doctor cohen, tomorrow)." Uhhh okay...thanks doc. You told me absolutely NOTHING. In my opinion, a larger appendix is a damn good reason to take it out!!!!! I'm probably not gonna go to the doctor tomorrows, because there isn't any reason he needs to see me. So my mom is just gonna call him in the morning and see what he wants.
On the plus side, I made it home in time to watch Big brother and Army wives!!! Yayayaya!!!
I'll post tomorrow after I talk to my doctor! Thank you all for all the good thoughts, they are very much appreciated :)
- Amanda :)
My mom, Aaron and myself have been sitting in urgent care since 1pm. Got taken back to a room at 2:30, talked to a doctor. And we are now waiting for someone to come give me pain meds because I am in sever pain :( I have a sharp stabbing pain in my right stomach and in my right lower back (same pains as before I had my gallbladder removed). We are being sent to the lab for some blood work and then over to x-ray/ultrasound. GRRR!!! But before I head over to the main hospital to get my ultrasound/x-ray the nurses here have to watch me for a half hour because of the meds they gave me.
This is not how I wanted to spend my Sunday. Potential things they think it could be is my appendix, possibly scare tissue from my gallbladder surgery, or an ovarian cyst. But honestly the only thing I'm worried about is missing big brother and army wives.
I will post updates on here as test results come back. Fingers crossed that it's nothing bad, and please send good thoughts!
- Amanda :)
P.S. Just got my shot, they put it in my hip. And I can't walk because I'm a big baby. The needle was huge :( there was nothing anti-pain about that sucker.
Saturday, August 25, 2012
So, today was such a great day for a couple reasons!
First; I booked my trip to california!!! I leave in 2 weeks!! I will be there for 8 days, I'm so very excited to see my best friend! I miss her A LOT!!! It's been a long time since we had some best friend one-on-one time! Ahhh, these two weeks better go by VERY fast! At the same time I'm in california, my wonderful boyfriend will be in Hawaii with his friends family. I leave the 7th, come back the 15th. And he leaves the 6th and comes back the 16th. So it will be perfect timing!
Second; Aaron and I spent the day having fun!!! We went out to wilsonville and had lunch with my mama. Then after lunch we went to Bullwinkles and mini golfed! We had planned to spend the day there but of course the one day we decide to go, someone/some group finds it necessary to rent the place out, closing it down at 3pm..we got there at 1:45..story of my life. After we got kicked out of bullwinkles, we drove to Aarons moms work to get some movie passes! From there we went and got me some delicious ice cream, headed home so I could take a nap for a little while. At 7pm we went and saw Hit and Run, it was SOOOO funny, we basically died the entire time! After the movie, we weren't quite ready to head home yet, because my mom had informed me that she was not home but my brother, sister, and one of my brothers friends were home..we went and got ice cream again :) lol
^ This is my new vest!!!
Third; I GOT A NEW VEST!!!! I'm not talking about a piece of clothing I wear. I have a vest machine (picture above). I put on the pink vest and attach those hoses to me and the machine, when I start it, it shakes me. The goal of this machine is to break up all the mucus that is in my lungs so I can cough it out and clear my lungs. I do this at least twice a day, along with all my other breathing treatments.
All in all, I'd say today has been a wonderful day! Now, it's time for bed, I'm up WAY past my bedtime! Good night!!!
Thursday, August 23, 2012
Here's a tip for everyone that is involved in a CF patients life. If you have a cold stay far and away from that person. For someone that is healthy and has a good immune system, getting over a cold, takes about a day or so. Well I've had this stupid cold that I got from my boyfriends mom for about two weeks now. I have a sore throat, no voice from coughing so much, headache, runny/stuffy nose, and I'm super tired (I just woke up from a two hour nap and I don't typically take naps). And I'm getting really frustrated because I don't feel any better than I did the day I got it. I hate it when someone gets me sick. People don't realize how much of an affect it has on people with compromised immune systems. For lack of a better word, it honestly knocks us on our asses. So next time you're sick with a "common cold" or something, STAY AWAY FROM A CF PATIENT!!!!!!! That's the end of my rant, I'm done!
Wednesday, August 22, 2012
Today's appointment went really well! I will be having surgery to remove and replace my port. I don't have a set date yet because the lady that does all the scheduling was not there by the time we were done with the appointment. The picture below is what they will be putting inside me (I'm happy its purple!!! lol). The triangle part is where the stick the needle into and the long tube that's connected to it, is threaded up a vein into my heart. With this surgery I won't be put completely under, so no tube down my throat to help me breathe, which is good! I will be lightly sedated but not asleep. I won't feel/remember anything (hopefully). I've also decided that taking my mom, sister, and boyfriend to a doctors appointment isn't a good idea. Because when you get the three of them together they act like children... They went through ever single drawer in the room, not to mention they managed to make some stuff they found in the drawers highly inappropriate. I swear I was the ONLY mature on in the doctors office. So next time only one-two of them get to come, never again will I allow all three of them to come!!
My soon-to-be port
I also went up to the college to talk to financial aid. Since I was sick and spent most of last term in the hospital, I unfortunately didn't pass any of my class, therefore I lost my financial aid. If I don't win my appeal I won't be going to school fall term :/ I'm hoping I'll win. I have to get proof that I was actually sick and in the hospital. And I also have to write a paper explaining why I wasn't able to pass my classes.. School hasn't even started and I already have homework :/ lol We'll see what happens with that.
When I find out when my surgery will be, which I should hopefully know within the next few days, I'll post! Thank you all for your support, it's absolutely incredible! I had no idea this many people cared about me. Thank you
Tuesday, August 21, 2012
Ugh.. Today while at the doctors I had to get a flu shot. I've had many many flu shots in my life. And I am not opposed to getting them, especially since I've never had the full on flu! It is recommended that everyone a CF patient is around on a regular basis gets one just to prevent giving it to someone with CF. We would end up being 10x sicker than any normal person. But unfortunately I am having what doctors call a vaccine reaction. My arm looks like I have a golf ball in it, it hurts like crazy and it's red. I am so miserable. My doctor told me to put an ice pack on it and to take some ibuprofen and that it would take a while for it to stop hurting. So right now, I am icing my arm and laying down.
GRRR... it's gonna be a long night :(
Top view of my swollen arm :(
My appointment today couldn't have lasted longer, I'm sure of it. We were there from 1-4.. it was ridiculous, but that's what happens when you have a mom that ask A LOT of questions.. lol (love you mommy <3 ). We asked a lot of questions about transplant and as of right now, I am not quite sick enough to be a candidate for one! Honestly though, I'm not sure I want one. After hearing about what it entails, like most people say, it's trading one disease for another...
But anyways, I saw one of my three regular doctors, and she said that I'm doing very well and that I've had a huge improvement since I was last seen and they were very happy with that! And the reason that my lungs have been so shitty was because I was still recovering from the surgery I had. Yes, it took me FOUR months to recover from a basic surgery (even though no surgery is "basic"). That's to be expected though when you have bad lungs. I also saw a dietitian and my doctor and her both agree that I should be 120 pounds, instead of 111 pounds.. I get really frustrated because even when I do EVERYTHING I'm suppose to, it's still not good enough for them. I've been at a 111 pounds for a very stable amount a time. Lately, my doctors have picked up a habit lately with telling me that I'm not compliant, it's totally BS!!! So now, my mom and I have made a deal that if I gain 9 more pounds and hit 120 and stay at 120 for a couple months, my mom has to buy me a car!!! :) She use to bribe me with clothes when I was younger but now that I'm older the stakes are higher!!
I also have a see a social worker when I go too CF clinic, who I love! I made an appointment to go in and talk to her at the end of September because once again its yet another thing I'm not doing right.. GRRR!!! IT's not to bad though, because I really like talking to her!
Two appointments down, one to go! I'm really glad that I had my mom and boyfriend with me today, I'm so thankful for them :) I'll keep you all posted on my upcoming appointment tomorrow! I'm not very excited because I have to fast tonight since I didn't do it yesterday.
- Amanda :)
Monday, August 20, 2012
^ One of my best CF friends Mat, myself, and my best friend Melissa
^ Melissa and I. If you look at my stomach above my belly button
you see my G-Tue. I've had it since I was a year and a half old.
I have it because having CF (in most cases) means
your malnourished, so at night I hook up at night to a pump that
feeds me formula that is high in calories and has vitamin supplements.
^ This is a PICC line, it's a form of an IV. That little blue tube
is thread up a vein all the way to your heart and that is how you receive IV antibiotics.
The marks around that little blue tube are bruises. And what you don't see in this picture this the
blisters the tape had left on my arm :(
I typically have a port, which is a impermanent circular disk that sits right under my skin
in my upper chest area, and when I need antibiotics they stick a needle in it and thats my IV.
But unfortunately my port has stopped working, so I have to get a new one :(
Pictures of my life <3
^ My boyfriend Aaron and I mini golfing :)
^ My grandma and I :)
^ My sister Ashley, myself, and my brother Austin
^ My cousin Dustin and myself at his high school graduation!!
^ Aaron and I in Sunriver :)
^ Driving to Sunriver :)
This mornings appointment went REALLY good! So last May I had my gallbladder removed and ever since I had that done my lungs never really recovered from the anesthetic. All they have done is slowly gone downhill. In may my PFTs were 32%, then they dropped down to 29% at the end of june and stayed there for about a month. And then they dropped down to 24%, which is the lowest they've been since I was six. Well today they were 37%!!!!! My PFTs haven't been that good in almost over a year!! This is VERY GOOD news!!! My mom and boyfriend were literally jumping up and down, it was funny!
Since my lungs are doing so well, I get to go to california to see one of my best friends, Melissa!!! I'm super excited!! My mom is a little worried though because last time I went to see her I came back with a tattoo (the money I used for the tattoo was suppose to be money for food while I was down there)!! Lol. I really hope I can come up with the money to go see her because I miss her lots and lots :)
Please keep your fingers crossed that the rest of my appointments this week go as well as this one did!! I'll post tomorrow after I'm done at the doctor. Thank you all for your support!
Please feel free to share the link to my blog! A reason I am doing this is to raise awareness for CF!
- Amanda :)
Sunday, August 19, 2012
So this next week I will be very busy with appointments. Ugh.. I'm not very excited at all.
Monday: I have an appointment at Good Samaritan Hospital @ 11:30. This is an appointment for social security. Apparently, the fact that I have had CF my entire life, stayed in the hospital many times, take a million different medications, and go to the doctor at least twice a month isn't enough proof that I am actually sick for them. If that's not enough bullshit already, I'm not allowed to take ANY breathing medication, whatsoever, before this appointment because they want to make sure I'm "really" sick. And they're making me do PFTs. Okay, really..my PFTs are gonna be even more horrible than they already are. Totally and complete bullshit if you ask me.
Tuesday: Starting on monday night, I have to fast. Which means I'm not allowed to eat or drink anything. I have to do this because they are making me take a glucose tolerance test to see if I'm developing CFRD (Cystic Fibrosis Related Diabetes). I have to have my blood drawn, drink a bunch of this pure sugar stuff, wait like an hour, and then have blood taken again...not excited at all. After I do that, I have to drive to portland for what my doctors call "CF clinic" which is @ 1:30. When you go to CF clinic you have to see a bunch of different people all in the same appointment. I have to see at least two of my regular doctors, a nurse, a dietitian, social worker, and pulmonologist. All that makes for a really long day. But this appointment is gonna tell us if I'm officially on my way to needing a transplant or not. FINGERS CROSSED!!!!!
Wednesday: My appointment this day is with a surgeon @ 11:30. My port that I have had since I was 12 has finally stopped working. Since it's stopped working, I have to have a new one put in, which means yet another surgery this year. (I had my gallbladder taken out in May. Which is a big reason why my lungs have been so horrible ever since may.) I'm scared to have another surgery because of the impact the last one had on me. I don't know if my lungs could handle it. But I guess we'll leave that decision to the professionals..NOT, I will be putting in my two cents. lol :)
One good thing is that I will have my mama and my boyfriend with me through all of these appointments!! I will be updating everyday after each appointment! Please keep your fingers crossed and send good thoughts my way!!!
- Amanda :)
Friday, August 17, 2012
I'm Amanda, I'm 19 years old and I have a chronic lung disease called Cystic Fibrosis. I was two months old when I was diagnosed with CF. CF is a genetic disease in which both parents pass along a defective gene. It effects the lungs, sinuses, and digestive system. You can read more at www.cff.org.
Throughout my life I have had many, many trips to the hospital, most of which result in at least a two week stay. I have a G-tube placed in my stomach and at night I hook it up to a machine that pumps in formula, which helps me gain weight because I'm malnourished. I also have a Port placed in my upper left chest (kind of in my cleavage area) and I use that for my IV's I have to get when I'm in the hospital. They stick a needle right into it and that's how I get antibiotics. I've had many different types of procedures M in life. I have lots of scars from all of it. In this blog I will be talking about what my "PFT's" are. PFT stands for Pulmonary Function Test, which measures how much air I breathe in and out my lungs and how much of my lungs I'm actually using. For someone healthy with no lung problems their PFTs would most likely be above 100%. My PFTs last year were at a baseline of 45%-47%. Within the last six months my baseline has dropped to 32%-35%. And since may I haven't been able to get them above 28%. Three weeks ago they were 23%. The rule of thumb use to be once someones PFTs dropped below 30% they were put on transplant. My doctors and nurses are incredible. Dr. Richard Cohen has saved my life more times than I can count. And since I've spent so much time in the hospital throughout the course of my life, the nurses at Doernbecher Childrens Hospital and Kaiser Sunnyside Hospital have become like a second family to me.
If it wasn't for my family being here and keeping me sane, I would have gone crazy by now. I have a brother and sister, both younger than me, that I absolutely adore! They mean the world to me. Ashley is 17, she's my best friend, someone I can tell just about anything to and the person that has always been here for me when I needed anything. Even though I'm technically older, she takes care of me like an older sister would. Austin is 13, he's very athletic and amazing at what he plays. I like to say I'm his biggest cheerleader! He always knows how to make me laugh and he always helps me keep a smile on my face. He's also one of my best friends. I would be lost without those two! I love them to the moon and back! Then there's my mom, my hero, my best friend, my rock, my biggest fan, and number 1 cheerleader! She's always on my side! If it wasn't for my mom, I truly believe I would not be here today. She means the world to me and I don't know who I'd be without her. I love my mommy soo much! I look up to her and how strong she is. I owe her my life. Thank you mommy for always fighting for me and never giving up.
As you can imagine having CF and going to hospital for weeks at a time, can make going to school a real challenge. My whole life going to school was always a balancing act. Constantly playing the catch-up game. Having to miss school was probably one of most difficult consequences of cf to overcome. Because I missed so much, I ended up having to go to a tutor to help me catch up on what I had missed, multiple times. I missed important lessons, dances, activities, sporting games, and just the experience of going to school like a normal kid. My friends helped me an enormous amount when it came to school things. Lauren (one of my best friends) always tried to include me in things that were going on at school. And help me with what she possibly could. As I got older, my lungs started to get worse, which meant more hospitals stays and more missed school days. From my sophomore year on, I made the decision to be home schooled. It was really hard. I got depressed because I knew I was missing out on so many things and I felt alone. My senior year, I was a year and a half behind on credits due to being sick. I wasn't on track to graduate with my class (which was a BIG goal of mine that I wasn't about to give up). Somehow I managed to get all those credits and I got to walk with my class!! Now that I'm in college, it's a little bit easier for me to complete my classes because they're on my time. Last school year, I went to school winter term and spring term. I passed all my classes winter term, but I was extremely sick spring term and spent most of it in the hospital and failed all my classes. It's hard for me to accept the fact that I am to sick to return to school this fall but it's reality. I had always dreamed of graduating high school and going away to college with all my friends. Living in a dorm and joining a sorority were the two things I looked forward to. But the two things I had to give up and watch all my friends do instead.
Going to community college isn't what I had in mind for myself a few years ago, but it's what I had to do. I couldn't be happier with that decision because it lead me to my boyfriend Aaron. Aaron and I had a writing class together spring term. We were doing a group project in class one day and he got put at my table. From that point on we've been insuperable! He's had a HUGE impact on my life and health. I had a few boyfriends throughout my life but no one can even come close to compare how much I truly mean to him. And how much I truly care for him. He helps me every single day, with all of my daily medicines, breathing treatment, and whatever else I may need. He's incredible and everything I've always wanted in a man! He makes me laugh, smile, and when I'm upset he always knows how to fix whatever's wrong, I can tell him anything and know that he's not gonna judge me upon it. In the three short months we've been together, he's become my best friend. There isn't one thing I don't absolutely adore about him. I love him and his family with every piece of my heart. And I hope to someday call them my family! Thank you baby for everything you've done for me! I love you!
I'm sure I'll think of more stuff later. But that's pretty much my life in a nutshell. So, I'm starting this blog for a couple reasons. First; I want to bring more awareness to Cystic Fibrosis and second; I am getting really close to the point in my life where I'm going to be needing a lung transplant and I want some place I can vent and talk about what's going on.
I will be posting updates and what not, probably every few days or so. I have lots of appointments coming up this next week, which are gonna be deciding a lot of important life decisions. Thank all for your support and love!
- Amanda :)