Roller coaster week

Hey everyone!

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

Left; all 23 vials of blood they took from me.

Right; my port, IV free <3

A view from the end of the table of all my family at my sisters birthday! 
This isn't even everyone that was there! lol Poor waitresses..

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

Top left picture; my battle wound on wednesday morning. 

Middle picture; me before my procedure.

Bottom picture; my battle wound again on friday.

Big picture on the right; my best friend Lauren who came with me on procedure day.

    

Top left: wednesday morning. Top right: thursday morning.

Bottom left: friday morning. Bottom right: sunday morning.

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

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

Sweet baby Caydn

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

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

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

Picture from my girls night a few weeks ago! 

Me, Kaylin, Juli, and Bree :)

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

-Amanda :)