Wednesday, January 15, 2014
Sunday, November 17, 2013
Last week I had an appointment with Stanford in which case I had to leave the hospital in order to go. Something that I quickly learned I shouldn't have done. The appointment itself went really well, which is a first! And I met a new CF friend while I was there her name is Caleigh! :) The day I left the hospital (Monday) I felt great, I was ready to tackle Stanford and to see my best friend!!! And of course I went home on IVs. But the day we flew down there (Tuesday) was a completely different story. I was nauseous, cranky, had a bad headache and just overall feeling like crap. And this lasted both days I was down in california, each day worse than the next. Have you ever had to fly while being sick? Pretty much the worst thing in the world. I typically really enjoy flying but this was such a horrible experience. I sat and cried in the airport, on the plane, pretty much anywhere and everywhere I was. Since I was so incredibly nauseous I couldn't even tolerate my antibiotics and decided not to even bother doing them while I was gone, which was only over night. I hadn't gotten any sleep the previous two nights so that wasn't helping my cause any. It was just a miserable, miserable time. Even the doctors down at Stanford asked me why I was there seeing them since I was still clearly pretty sick. My answer; well my Kaiser doctors told I had to come. Come to find out, I didn't have to go... Thank you Kaiser doctors.
Sitting in the airport waiting for our flight home I had my mom call my doctors at Kaiser to ask them to just readmit me since I was still feeling so shitty. And they said I had a few options; 1. Be seen the next day at clinic. 2. Go to the ER when I land. Or 3. just stop IV altogether. In the past, after I'm on IVs for a certain period of time my body starts to kind of reject them and they actually start making me even more sick. So I decided that I would just go into clinic the next day to see my doctor. After all, I had already start to feel better since not doing my IVs for a day and a half. When I went in to see my doctor I did, we decided that what we would do would be based on what my PFTs (pulmonary function test) were. And surprisingly they were 21%!!!!! Which is the highest they've been since August!! So I came off IVs but we decided that a bag of fluids to maybe help filter out the antibiotics would be helpful before they took out my IV, so we did. And I honestly think it did help somewhat. And she wanted a urine sample to see if I had any ketones in it. Which appears when you haven't been eating for a few days and your body starts to eat the reserve your body stores and your muscles. It came back negative! But on the not so good side my weight is down quite a bit, I'm at 97 pounds :( now that I'm feeling better and not so nauseous I'm eating better and doing my night feeds! Hopefully I'll be able to put that weight back on!!!!
Just our typical "reunited with my best friend" picture <3
Two very important girls in my life!
My lovely seeeester!!!!
The last couple days I have felt 100x better than I had been! Which is SOOOO nice to be able to function like an actually human being! I'm sure there's more to tell but that's all I have for now. I'll update again in a little bit :) Thanks for reading, please like, share, and follow my blog :)
Good thoughts and prayers are always welcomed and appreciated!!!! <3
- Amanda :)
Monday, November 4, 2013
I know that I owe you all a big update and explanation for my lack of postings and I'm happy to say that I'm working on it! But for now just something short and sweet.
I just got readmitted to the hospital after being out for THREE very long weeks..yes that was sarcastic! I'm just sick again and not doing so well. But lately my pattern for coming in has been every two weeks for two weeks. This time however, I will only be here for about a week and then finishing at home because I have a trip to Stanford coming up on November 13th, that I leave for on the 12th. But since I'm not staying in california for a visit with my bestie like I normally do, I will be on IV when I go down. And as an added bonus my lovely little sister Ashley will be coming with my mom and I for this trip!!
Last time I was in here they found a hole in my heart. I'm told that it's fairly common in people with pulmonary issues and that I could have had it a year ago but they weren't aware until now seeing as how they didn't do the right test until now. There's nothing they can do about it right now, especially since it's not an issue right now. It's just something that they're gonna watch and it's something Stanford likes to know about. When I get my new lungs, I guess a lot of the time the new lungs will squish it closed. Or if the surgeon thinks it's a problem they will but a stitch or two in it to close it up. In my honest opinion, I think it's from a broken heart, so allow me to say thanks to my ex who broke my heart...literally.
Right now my pft's at best are 18% and I'm on 3 litters of oxygen 24/7. I can barely do anything, right now something as simple as talking is hard for me to do because I get so winded. I will try to post throughout my hospital stay about whats going on and everything. As well as working on my big update! Two dry runs (yes, two, I'll explain in my big update) and 7 months on the list and I'm still waiting for new lungs.
I hope and pray that my call comes soon. I am so ready for it. I'm ready to be done with this part of my life and to just move on. My goal is to be able to celebrate my 21st birthday (in march) with new lungs.
Prayers and good thoughts are always welcome and VERY appreciated! Thank you for reading.
P.S I have also created a Go-Fund-Me account. Please share and/or donate! Anything and everything is appreciated!
Thursday, June 6, 2013
Here's part two of my california adventure! I am happy to say that this is the good part of my trip down to california. Once we got to melissas house, we were all extremely tired but our day wasn't quite over. We had been invited over to melissas parents house to have dinner with them! It had been far to long since I got to see them!! So I was pretty excited to have dinner over there, and for them to finally meet my mom! The following day was the day my mom was going home. Since her flight wasn't until 7 pm we had all day to do something. You would think the california sunshine would be motivation enough to get up and go out and do something but it wasn't... we pretty much slept..all day. We were exhausted both emotionally and physically from the day before. After sleeping for most of the day we went and got some lunch at this delicious local sandwich shop, gave mom a little mini tour of the town and college, and then headed to the airport. Never in my life have I ever seen such bad traffic/drivers in my entire life. Californian drivers are insane!!!! Anything goes, even if you break a law or twenty! Once we dropped off my mom at the airport, that's when the fun really started (sorry mom, love you)! It had been 8 loooonnng months since Melissa and I had some good quality best friend bonding time. We have always said that if at any time her and I were single together that there was a possibility that the world might end with all the trouble we would cause..yeah..well we're currently both single and the world is still standing.. we've definitely lost our edge. We were more of trouble makers before when we both had boyfriends. Granted my lungs have dropped a significant amount since then and she now works full time, that might have something to do with it. But anyways, our rein of terror started out with going home and going to sleep. Hanging out at the house is what we did most days but we also had some exciting adventures a couple days I was down there. One day we decided that my trip wouldn't be complete if we didn't do what we have come to know as our tradition whenever I come see her. Getting new tattoos!!!!!! Every time I go down to california to visit her, it just so happens that I end up getting a new tattoo and/or piercing. Last time I was there, I got both. My first trip down there I got a matching "just breathe" tattoo with melissa which is on our left sides, my second trip I got "unfold your wings" on my right shoulder, and this last trip I got "Dum spiro, spero" on the outside of my left foot! And melissa got two roses on her right shoulder!
My tattoos <3
Another adventure we went on while I was there was to a beach! This was my first time at a california beach so it was really exciting!!! Typically a trip to the beach in oregon means wearing four plus layers and still freezing your butt off, wind constantly blowing, runny noses, ear aches and sometimes rain. Not the way the beach should be experienced! I also love being in the car so the long car ride to the beach was also nice. Once we got to the beach I was extremely happy! It was hot, not windy, good drinks and I was with my best friend, what more could I ask for?!! Laying on the beach for hours under the warm sun felt amazing!!!! The sunburn that resulted in me laying under the warm sun for hours, did not feel so great.. This was the first time I had ever been sun burnt, I normally tan not burn, so it was a little weird for me. But all in all it was a wonderful day with my best friend :)
Me and Melissa on our way to the beach!
Selfie on the way to the beach!!!!
Me, Kellie (melissas roommate) and Melissa <3
Stinson Beach <3
I also wanted to go to a california mall while I was there. So we went to a local mall..it was about half the size of the one I go to at home. But hey, at least I got to go to a california mall! We were on a hunt for a new belly button ring and we looked in just about every store that sold belly button rings and were not successful on our mission unfortunately. After the mall we went over to melissas parents house for one last family dinner and so I could meet her grandma! I love her family, and I love that they think of me as part of their family! Thank you guys, I love you <3
Last family dinner before I left!
On my last day in california melissa made appointments for the both of us to have massages and facials at her work (Massage Envy) before heading to the airport! I was excited to meet all her coworkers. Every time she would introduce me to someone they would say, without fail might I add, "Oh I've heard so much about you!" lol. Clearly melissa loves me a lot more than I realize! Both the massage and facial were absolutely incredible and something I will be repeating when I go back!!! Just what I needed before heading back to rainy ol' oregon. Thank you melissa for planning the wonderful spa day for us :)
Leaving is always the hardest part. I hate leaving her because I feel like a piece of me is missing once I leave and we're apart. Going back to reality is always hard to. Back to doctors appointments, responsibility, and just real life that I would rather not deal with. Lol. But I had to come back at some point in time. The trip was very much so needed!! And I cannot wait to see melissa in a few months!
Thank you for reading! And as always prayers and good thoughts are welcome and very much so appreciated <3 If you want updates go "like" this facebook page https://www.facebook.com/pages/Prayers-for-Amanda-Sue/540950289248971?fref=ts
- Amanda :)
Monday, June 3, 2013
Hey hey hey!!
I'm sorry that this post is so delayed! It's been a hard one for me to write because of how everything went when I was at Stanford. And because I'm opening up about something that's really sensitive to me. So please I ask, if you don't have anything nice to say, don't say anything at all. This post is just part one of my adventure to california. I will be posting about my actual trip there as well!
As most of you know I had my first follow up appointment with Stanford on wednesday May 15th at 10:30 a.m. and since my appointment was so early in the morning my mom and I flew into california on tuesday! This is a trip I had been looking forward to for months and months. Strictly because of the fact that I got to see one of my best friends! On tuesday, my mom and I got to california at about 4 p.m. (I think) or so. Waiting to pick us up at the airport was Melissa!!!!! I was so freaking excited to see her since this trip down to california was under good circumstances. Once we found our hotel and put all of our luggage into the room, we went and got some dinner at Olive Garden (I know, I know, how surprising!). Seeing as how three of us had to get ready in the morning the next day we were up bright and early. We got to the hospital around 10:00 since we were told to arrive at least 15 minutes early. But for some reason or another weren't actually seen until 11:30 or so. It was extremely frustrating!!! While we were waiting to be seen though, I had the chance to meet two girls that both had CF! I love making new CF friends. All CFer's have this instant bond to one another! After waiting an hour past my appointment time we were finally put into an exam room just to wait some more. Because we all know that going to the doctors means playing the hurry up and wait game..most annoying thing in the world if you ask me. lol. I saw a transplant doctor, nurse (Lisa, who I love!), nurse practitioner (NP), and a social worker. This appointment was a tough one for me because I got yelled at multiple times about something that's a really sensitive to me. I take pain medication. Most CFer's or non CFer's that have "end" stage lung disease are in a lot of pain because it hurts to breathe. It's something that has become more and more common. But it's hard to open up about this because I feel really ashamed about the fact that I have to take pain medication on a regular basis and it's because of the bad stereotype that comes along with it. Anyways, literally every single time I see a doctor I get a lecture about how much pain medication I'm taking and the fact that I have to take them. So when the first person walked into my exam room I knew I was eventually gonna hear it from them.
First up was the NP, she started out asking me how I was, what my breathing treatment routine is, and of course what medicines I take which of course lead to pain medicine lecture number 1 of the day... She was originally kinda rude about the topic but my mom said something to her before she could say anything to bad, which made her change her approach about the whole thing. And the conversation ended fine! The second person I saw was Lisa. She's the one person I look forward to seeing at Stanford. We just kind of caught up about everything that's happened since the last time I saw her, hospital stays, life, rehab, a little bit of everything! It was a nice visit! My mom, melissa and I had been curious as to exactly how many people are on the double-lung transplant list at Stanford. We were assuming that the number of people had to be in the thousands somewhere. Boy were we wrong. There is only 22 people on the list. Crazy right?!?! And of those 22 people, I am among the bottom of the list, therefore on the "healthier" side of patients. Never in my life have I been considered healthy anything. The third person of the day was the doctor. He was pretty pleasant to talk to, but of course the topic of pain meds came up. And instead of yelling at me and making me feel bad about taking them and doing absolutely nothing to help me. He actually sat down and gave me a starting point on how to cut back. He was the first and so far the only person that has done this. It was nice finally getting some help with this issue. I was also informed that there are alternative medications I could be taking that aren't narcotics/habit forming medications, that will help my pain in the same way. My question to that was, why the hell was I not put on those first then?!?!?!?! Thank you Kaiser for creating this problem for me that in all reality could have been avoided. I'm sure you all have heard the phrase "they save the best for last" sometimes this can be true, but this day was definitely NOT one of those times. The last person I saw was the social worker. When my mom and I went down to Stanford the first time, my first impression her (social worker) wasn't necessarily the best one. There was just something about her that I wasn't impressed with. And I feel like if she is suppose to be the support person for my mom and I when I go down for transplant, she should be someone I feel comfortable with/sharing things with. So going down this time, I was willing to give her a second chance. Well this second chance was officially blown. I'm not going to go into details about what was exactly said because I honestly can't remember what exactly was. She was extremely rude about the topic of my pain meds and by the end of the conversation I no longer wanted to be on the transplant list, that's how horrible my appointment was.
After I was finished being yelled at/reprimanded by everyone I finally got to leave, but not before I had to go get some labs done of course. Honestly, what I really wanted at this point in time was a drink. lol. The second I walked out of that hospital though, my vacation began and I didn't have a care in the world. We had about a two hour drive to melissa's house. Since, I love being in the car to me, there's nothing better than being with my mom and best friend, having a little mini road trip. On our way home we made a pit stop at Pier 39 to show my mom around the pier and all the seals!! (picture below)!! We also, had lunch at The Hard Rock. I've always wanted to eat there but I wasn't impressed with the service or the food. So it was kind of a disappointment. We got back in the car and continued on our journey home. On the way home, we had to cross the Golden Gate Bridge. Which is something my mom really wanted to see since she never has before. I love it, I think it's so pretty. But my mom on the other hand was sad that the Golden Gate Bridge wasn't actually golden.... lol. Silly mom! After an hour and a half of stop and go crazy california traffic we finally got to melissas cute little town house!
They all smelled horribly!!!!
This is a facebook page I have set up to make it easy for people to follow what's going on. Please "like" it if you want updates!
- Amanda :)
Tuesday, May 7, 2013
The table full of the raffle prizes!
Mimosas, Chocolate Covered Strawberries and Cookies!
Face paintings that were done :) so much fun!
Katrina, she curled my hair that day!!
All of the wonderful hair stylist and barbers that participated that day :)
THANK YOU ALL!!!!!
Becca wanted to paint my toes! I'm one spoiled patient <3
One last thing, seeing as how it is May, which means CF awareness month. Please share the link to my blog, wear purple, or donate to the Cystic Fibrosis Foundation or to me and my family for my transplant. Anything and everything helps!! We are in the process of planning more fundraisers and when we have definite plans, I will post the details for anyone who would like to join!
How CF happens!
How to donate to me and my family!
1. You can go to and US Bank and make a deposit into my Real Heroes Become Angels bank account.
2. Donate through paypal! Copy and post the link below :)
Thank you all for your love, care, and support! Prayers and good thoughts are always welcome and very much appreciated. <3
- Amanda :)
Thursday, April 11, 2013
As you all know I am currently on the transplant list. And there is a lot of family expenses that come along with that. So we are having some fundraisers to help raise money for me and my family!
Monday, April 29th 2013 - What: Cut-A-Thon and Raffle
When: Starts at 10 A.M.
Where: Strut Salon 1909 NE MLK Jr. Blvd.
Portland, Oregon 97212
Details: This is going to be a Cut-A-Thon and a raffle. Local business will be donating things to be raffled off. You will receive a raffle ticket with a minimum donation on $20 dollars with each haircut. For every $20 dollars you donate you will get one ticket. All proceeds will be going to my family and I. We are currently accepting donations to either raffle off. Or if you would prefer to donate directly to me, that's welcome to! Thank you!
I am still selling bracelets! If you are interested in purchasing some bracelets you can send me an email (listed below), leave a comment on here, or contact me through my facebook (there's a link on the right side of my blog)!
Cost: $3 dollars each
Bank Accounts and Paypal
I have a donation bank account set up for people to make donations if they would like to. You can go into ANY US Bank and make a deposit into the 'Real Heroes Become Angels' account.
You can go through my Paypal account! (Copy and past the link and it will take you to a donation page) Sorry, I couldn't figure it out!