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 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 :)

Saturday, November 3, 2012

Fridays Doctor Appointment

    I had a doctors appointment yesterday with my new primary doctor. After having the same doctor since I was born they finally switched my primary to someone new. I will still be seeing my CF doctors that I've always seen!! Normally I have a really hard time letting in new members of my health team because I don't know them, I don't trust them. But for some reason with this new doctor I don't feel that way. I trust him 100% and I really enjoy seeing him. For the last year or so, every time I would leave the doctors I would leave feeling bad about myself and bad about everything I was or wasn't doing. So it was really nice yesterday when I left the appointment happy. He never once said anything negative. He was proud of everything I've been accomplishing lately, with all my appointments and what not. It was definitely a much needed breath of fresh air :) Since leaving the hospital, I've gained two pounds, which is a big accomplishment for someone with CF. And for the most part, everything else is looking really good!! Yay!!! Yesterday, I also had to have some labs taken. I was told to go to the nurse treatment room to have them done, because instead of getting poked, they can take labs from my port. And of course I wasn't about to let someone poke me if it wasn't necessary. Well the only person at the nurse treatment room that does it wasn't there because it was their day off. So I went over to the infusion center (another place that can take labs from my port). The nurse that was going to take my labs, had NO idea what she was doing... Now, just so you guys know, taking labs from a port is quite possibly the easiest thing to do, I could do it with my eyes closed. I was not comfortable whatsoever with this nurse doing it. I literally had to tell her what she needed, what she was doing, and I walked her through how to do it. I wanted to claw her eyes out, because something that should have taken 5 minutes ended up taking a half hour..unacceptable if you ask me. It was the most frustrating thing. By the time I got home, I was ready for a nap. Needless to say, I took a two hour nap when I got home :) lol

    There has been so much going on lately and I know that this is just the beginning of it all. I literally have at least one appointment each day, monday-friday. It's so overwhelming.. I'm so lucky I have my mom here to help me keep everything straight. I can't even begin to thank her enough for what she's doing for me. I love you mom, thank you for everything. On top of all my appointments, I'm also having to take care of myself. Which right now includes, two IV antibiotics (ones every 8 hours, and the other is every 24), three different breathing treatment session,s which each time includes (two inhalers, two nebulized medications, and a vest aka chest PT), over 10 different medications (averaging to about 60+ pills everyday), and at night I have to do night feeds to help but on weight. Not to mention all the other normal things I do everyday. Such as, taking a shower, getting dressed, getting ready for the day, doing laundry, making my bed, eating, chores. And because my body has to work so hard to breathe, all of these things are extremely challenging for me to do. Without fail, I take at least an hour nap everyday. Taking care of myself is a full time job. I'm negative 10 spoons everyday (reference to another blog post; "The spoon theory"). For everyone out there that thinks they have such bad lives for whatever reason, just remember that you're lucky you don't have to worry about if the breath you just took was possibly your last. Be thankful for just being able to breathe with no struggle. Being able to breathe is a wonderful gift, I can't wait to be able to take a full deep breath one day. But for today, I'm thankful that my lungs haven't given up on me yet!

    Good news is, I don't really have anything going on this weekend, so I can hopefully just rest a bit! I have a busy ish week ahead of me next week. So if my post are a few days apart, it's because I'm sleeping. But I will keep this updated to the best of my ability! 

    Prayers and good thoughts are very much so appreciated and welcome!!
-Amanda :)

Thursday, November 1, 2012

Lung Rehab

     Today I started what is called "Lung Rehab". It's a program designed to do two things; first it's gonna teach me how to get the best/most use out of the lungs I have and to slowly work on building up my lungs. The second thing it's gonna do is get me into the best possible shape I can be in before my transplant. During my sessions they will be monitoring my blood pressure, O2, and my heart beat pattern. So I'm basically getting my own personal trainer, FOR FREE!!! Kind of awesome if you ask me :) lol. I will be doing this at least twice a week. Right now it's scheduled for Tuesdays and Thursdays at 1pm! You will notice (if you haven't already) the majority of my appointments are in the afternoon. I don't do mornings very well. But anyways, I'm pretty excited to be starting this program. Why I didn't start this program sooner, I'm not really sure. I'm just glad to be doing it now! 

This is my new trainer Megan a.k.a my new best friend :)

Part of the gym I will be spending a lot of time in!!

    I have a lot of appointments coming up. Tomorrow I have a doctors appointment at 2 to meet with my new primary doctor and get a feel for what he's like. And I also have to meet with a home IV nurse tomorrow so they can take labs, which test my liver function and they also take a CBC (complete blood count) it's a routine thing they have to do when I'm on IV antibiotics. They take labs every three days. Tuesday, I have another doctors appointment, which will tell me if I get to come off of IVs or not. So keep your fingers crossed! And Thursday, will be my first official work out session!! I'm sure I have more appointments, I'm just not aware of them. Lol 

Prayer and good thoughts are always welcome and appreciated!!  

- Amanda :)