For You, Dalton

I made this a few weeks ago. Tonight has been a hard night for me. I miss Dalton so so much. Hope you like my video. And just in case youtube takes the song out for copyright then it is supposed to have Heaven by Bryan Adams playing in the background. I hope you enjoy. Let me know what you think ❤️


Click here  to watch my video

-Katie

Life

Everyone says that the best times of your life are your 20's. I've had the worst experience in regards to being in my late teens and early 20's. This year I'm gonna be 25. Omg that makes me sick to think about! I mean in one way I'm glad I made it this far but in another, I don't even feel like I have made it this far. I have zero quality of life, literally. And although I've never admitted this, I'm going to now. I'm jealous. I'm jealous of the people my age who can go out and have fun. I'm jealous that I am 24 and have nothing to show for it. Where is my life going? I have nothing. I do nothing. I am happy that other people get to do fun things but at the same time I hate it. I want to have fun. I want to live my life. I don't want to lay in this bed anymore. I don't want my independence taken away because I need help taking care of myself. I'm tired of spending my life hooked to a pole. I hate it. I hate every single minute of it. I'm a strong believer that your life is what you make of it. I try to stay positive, especially on the outside but on the inside I can feel depressed more than anything and anyone.

I don't have a lot of visitors (I think 3 since I've been home and 1 that will be coming this week if I get rid of this cold I have) or invites to do anything. But those of you that do visit, it means the world to me and I thank you so so very much. I'm not depressed but I just needed somewhere to let my steam out. I don't know what my future holds. I just don't know. And honestly, whatever you do, please don't message me saying that I need to stay positive or be stronger or any of that. I'm fine. I just wanted to get my head cleared. -Katie
Just very annoyed tonight. 

One Month!

It's already been a whole entire month!!! Happy Lung Transplantiversary to you Dalton! I'm still so happy for you since the moment I knew you had gotten the call! Of course it's been a rough month but  despite all of the hurdles you have had to jump, you have come out on top everytime, with a smile. Keep fighting through the pain, keep going strong! You are already amazing in my eyes. I can't wait until I get my transplant so we can be together again.
I want to say THANK YOU from the bottom of my heart to the family of the donor that Dalton received his lungs from. What a beautiful gift. So, wherever you are, thank you. Because of organ donation and the act of kindness, my husband is still here. I know the holidays are going to be hard for you. It's only been a month since your loved one passed away. We are praying for you and have prayed for you all everyday since Nov. 16, (when Dalton actually received the call but received his transplant on the 17th).
I meant to write a longer post but this is all I got at 4 am. Thank you God for blessing my husband with such an amazing gift and please keep your arms wrapper around his donor family. God Bless!
-Katie

Katie Update

Update on Katie (me): I am being discharged from the hospital on Saturday. My mom is coming up tomorrow and then we will be let loose on Saturday around noon. They are stopping all antibiotics and are just going to let me go home for a few days. My goal is to be able to stay home for a week. I'm not being discharged because I'm healthy, I'm being discharged because there's just nothing more they can do here medically to make any improvements on my health status. I'm on a lot more oxygen and get tired really easy so I won't be going out of my house very much, but at least I will be at HOME. Dalton's mom and grandma are here being his caregivers since I am not allowed to be around him, so no worries there. 

Another thing is that I am having insurance problems right now. As of this moment, I'm not on the transplant list. I have exhausted my first insurance and now am waiting, waiting, waiting for my second insurance to make up their minds. There are a lot of people working on it. There is even a lawyer working on my case in Chicago, which I thought was pretty cool!! I rarely do this, but please pray I can get back on the list soon. I really need these lungs. I want a second chance. I want to grow old with my sweet husband. I want to do so many more things. Like I always say, "I'm not praying for someone to die, I'm praying that when God takes them, they will have chose to be an organ donor". Thank you all for your love and prayers. You will never know how much they mean to Dalton and myself. -Katie

#PrayersforthePragers

Bronch

Dalton had his bronch yesterday. We should have some preliminary results today. Please pray that there is no infection and no rejection. -Katie

#PrayersforthePragers

Angel Baby

As some of you may know, a tragedy rattled Dalton's side of the family, my side of the family and friends from near and far. In April 2012, Dalton's mom had a baby who tragically and suddenly passed away after 8 days on this earth. She was beautiful, definitely an angel on earth. She blessed each of us in so many ways in her short time of being here and taught a lot of us lessons about life, like not to hold grudges and to just be nice to one another. No matter what.
Since her passing, I have looked at her picture everyday. Her picture stays in my wallet and I manage to take a glance each time it opens. I even got a tattoo of an S in tribute to her (along with her brothers).
Going through a lung transplant isn't easy. I'm not going to sugar coat it at all. First off, actually being sick enough to go through the transplant is a journey on it's own, but then there are so many tests that have to be performed to decide whether they want to list you. And I will tell you, the answer isn't always yes. In those cases, you are sent home to live the rest of your life in comfort whether it be days, weeks, maybe months. In other cases you may be sent to another facility to see if they will accept you and put you on their list. When that's all done, the waiting game begins...
I started this blog talking about my baby angel sister-in-law Samantha. You're probably wondering how all of it ties together. Tonight as I was about to lay my head down on my pillow (after a long, tiring, sick day) I raised up my pillowcase. There was a piece of fuzz on my sheet. This piece of fuzz wasn't just any piece of fuzz, it was very important. It was a sign from Samantha, telling me that she's taking care of Dalton and I. The fuzz was in the shape of a butterfly. It wasn't like I had to squint hard like you do sometimes to see images in the clouds. It was just right there. A butterfly piece of fuzz.
What a nice way to end my day. Thank you my sweet sister. You are forever in my heart. I love and miss you so very very much.
-Katie
#PrayersforthePragers

November 16, 2014

Dalton got the call for new lungs!!!!!

A Look Back

Just for mine and Daltons sake, I'm gonna post what's went on here the past few days. I want to be able to look back and remember and I want dalton to look back and read what I was feeling at the time. So I am gonna post a few new blogs in order to keep the past couple weeks straight. 

-Katie 

#PrayersforthePragers

Address

I have been asked multiple times for an address for us. Instead of sending mail to the hospital please use this address from now on. Thanks!

Dalton and Katie Prager

Portal Place 

2633 5th Avenue 

Apt. 105

Pittsburgh, PA 15213

❤️ 

Thank you all for your continued prayers, love and support. 

#PrayersforthePragers

Dalton Got a Lung Transplant!!!

Wow. Exactly one week ago I was holding Dalton in my arms and we were waiting for his double lung transplant surgery to start. I can't even begin to describe how emotional in so many ways this week has been. There have been ups and downs but I can safely say that I have my husband back. He's himself again. I've missed him so much. I wasn't sure how much longer he could go without a miracle but he never gave up and I never have up on him. Like always, he came out on top. I'm so incredibly happy for him. I can't wait until he gets off of the ventilator and can take that first breath on his own. Wow! I can't even imagine!

His surgery started early on November 17th and lasted until 5:00 PM.  There were a few complications, but they got settled.  He now has a trach though and will have that for a little bit until he gets off of the vent and can breathe on his own.

I'm so happy with how he's been improving and so are the doctors. I give all my thanks to the God above. Without him nothing is possible.
-Katir

Follow Us on Facebook!

Update 10/30/2014

My virus swab came back negative. Great news. Now I can visit dalton again. And were both negative for the virus. 

Bad news is that there is something else going on in my body. They have upped my steroids and they have switched around my antibiotics. I haven't been awake for more than 2 or 3 consecutive hours since Sunday and I have only ate a couple of things here and there. 

Dalton almost had lungs last Friday. He was the first on the list but before anything could happen, they went bad. The surgeon and our CF doctor, Dr. Pilewski had been called. He is wearing his bipap a lot more lately. This will increase his LAS (lung allocation score- find out more at: http://en.m.wikipedia.org/wiki/Lung_allocation_score

These things are definitely taking time but with Gods grace and our will to live together and get every ounce of love into our marriage, we will come out stronger than ever. It's a promise. 

I got to visit him for the first time today in about a week and it was the most precious time spent that I could have asked for. 

Thank you for all of your support and prayers. It means more than you will ever know. We aren't going down without a fight. Please just pray, pray, pray.

Love, Katie

Gross

If you hate reading about gross stuff, stop reading now. 

With CF, it's common to have bowel blockages and constipation. Today I have been experiencing some discomfort but tonight it hit me like a ton of bricks. I have drank so much miralax today but it didn't help. Doctor also thinks I have c. diff. So, we will see. They sent off a sample to be tested. 

In about 5 minutes I'll be getting an enema.. I hate these things! Don't worry, I'll post tons of enema selfies!!! Hahahaha just kidding! (I had to lighten the mood somehow)! -Katie

Here is a pic of my distended belly. 

Dalton

All we need are prayers. No amount of money, no size of house, and no type of car will ever be more precious to me than the love I have for my husband. Please please pray. Please pray for peace. Pray for healing. Don't pray that someone dies so that he can get his lungs, but pray that the one God chooses to take home with him makes the choice to donate their organs. I have faith that their coming and for Dalton's sake, I hope they do. Tears are falling as I type this as they have been doing most of my waking hours the past few days. We need a miracle. -Katie

Pray

Been a rough emotional day here. It's hard enough having one end stage CF patients, let alone two. It's hard to focus on me when all I care about and want to focus on is Dalton. Please pray for us. For peace, so that our minds will stop racing. For wisdom, to make all the right choices when it comes to both of our health. For time, the most precious thing of all. We need more time. More time together. More time of loving. More time for cuddling. More time for being each other's best friend. More time for laughter. We refuse to stop fighting for ourselves and for one another. Please pray. -Katie

9/25 Update

We are no longer going home tomorrow. We just aren't ready and the doctor isn't pushing us. I know if we went home we would just end up right back here where we are in possibly worse condition. I said in the video we are sleeping a lot but we really are just napping here and there. They aren't good full nights rests or anything. It's really hard to get a good nights sleep in this place, but being on the bipap machine helps a little. Here is another video I made just giving a brief update. Thanks for all the prayers. -Katie

http://youtu.be/MpTVF6tSl7s

9/24 Update

Just a short video update. Sorry I haven't updated in a few weeks. We have both been really sick. Thanks for all the love and prayers. -Katie

http://youtu.be/reRq0Gh8Pwo

Organ Donation

Dalton and I were married on July 16, 2011 and since then, we have spent so much time being sick, tired, and in the hospital that we haven't really had the chance to enjoy being married.
We have the best support system that I know and people are always asking what they can do for us. I finally know what everyone that wants to help can do.
First, we need prayers. A lot of them. If you don't believe in God, think positive thoughts, send good vibes, we will take anything!
The other thing you can do is go to www.organdonor.gov and sign up to be an organ donor. You can't take your lungs and other body parts with you, so why not give Dalton and I the chance at life?! I have attached a video to show how hard things can be sometimes. Although we are just laying there, breathing is so hard. It's crazy to have to think about breathing and have to concentrate on it instead of it coming naturally. Thank you for all of your support, love and prayers like always.

Prayers Please

I hardly directly ask for prayers for Dalton and I but this man is my whole world. He has my entire heart. Maybe this will give you a glimpse into our lives. Neither of us are breathing well or feeling good. We need a miracle so bad. Please keep praying... Please..
Also, if you could please share this, it would mean so much to us.. The more people that pray the better. I just keep trying to stay positive and keep trying to keep the mindset that God IS in control...
(This is our wedding song) -Katie

Well

I want us to feel better already. I hope this isn't our new 'baseline'. Think positive. Need prayers... -Katie

Surgery Cancelled

Surgery is cancelled for today. Will post more later. -Katie

Surgery Day

After 5 years my port (http://en.m.wikipedia.org/wiki/Port_(medical)) has finally given out. We have had some good times and bad times but it's time for a divorce! I will be going under today in a little while and I will also he getting my new feeding tube because it has also been causing me problems. Thanks for all your prayers!!! -Katie

Videos

Enjoy!- Katie

Videos

Enjoy! -Katie

RX: Fish Sandwich

Okay, so this is the FUNNIEST thing. It actually has been really annoying but at this point, I am just laughing. Okay, so as a CF patient, our doctor requires us to eat as many calories and as much protein as possible. Even with extra calories, we still can't seem to gain or maintain weight. I have had the craziest time dealing with the Kitchen people this time around at the hospital.
I am obsessed with the cafeterias fish sandwiches. They are breaded and have shredded lettuce and they taste just like a good hometown, country, firehouse fish sandwich. If yall know me, you know I love a good fish fry so when I come in, I pretty much hit up the cafeteria as much as possible (especially at nights).
Eventually it adds up $$$ to keep on buying food from the cafeteria especially when I get trays delivered to my room for free. Tonight I decided I was going to take a stand! I want my fish sandwich tonight and I am not paying for it! That sounds horrible of me but this hospital gets enough money from my insurance, they don't need my money too! So I talked to my nurse and she offered to call the dietary office for me to see if I could get one!
I was SO happy! I was like yessss finally, saving my $4 AND getting my fish sandwich. What happened next is crazy.... The dietary supervisor is actually making my doctor WRITE and FAX a prescription for me to have a fish sandwich..... That's right, I was prescribed a fish sandwich, official signature and everything.. How crazy! I just have to laugh! If I didn't laugh I'd go crazy in this place!! Love y'all! -Katie

Video :)

Check us out!! -Katie

http://youtu.be/I4vc6tot0P4

August 23 Update

Dalton and I both have rhinovirus which is why we have been feeling so terrible lately. There is nothing they can do except keep giving us the antibiotics and let us ride this one out. Still not feeling well but in time we will be back to our regular selves! Thank you guys for all your love and prayers! -Katie

August 22 Update

Dalton and I left Fleming County Hospital by ambulance around 11 pm last night and arrived here in Pittsburgh around 5 am or so. Today has been a slow day. Very exhausting and a lot of sleep happening. Things aren't looking super bright right now for either of us. We are trying to control what is trying to take over our lungs. We are both coming out swinging. Positive attitudes all around here, now just have to get our bodies to respond to antibiotics. We both got steroid injections so hopefully that will help gain some energy. Thank you for your prayers! The love is overwhelming. -Katie

August 21 Update

After spending most of the day in Fleming County Hospital ER, we are being transferred to University of Pittsburgh Hospital to be closer to our CF doctors and transplant team. Could definitely use some prayers and good vibes coming our way. Still have a long road ahead of us, but we definitely have the determination to make it to and through transplant. We are tired of watching our lives pass us by. We're ready to start living. We're ready to travel, adventure, and explore all that this life has to offer. Thank you guys for your support. -Katie

Dalton and I waiting in the ER

Sick

I am feeling the sickest I've ever felt in my life. It feels like I'm drowning. -Katie

...

Dalton and I had our 3 year anniversary this past July. It was good. 

All I see on Facebook are people posting baby news and it makes me sad I'll never have a baby bump... 

Tired

I can't sleep. I've been watching tv all night. We are back on IV antibiotics. Our next appointment is aug 6th. I didn't plan on writing a whole lot, just a small update. I'm ready to LIVE my life, not just survive it.. -Katie

Work It

30 minutes of vest this morning and breathing treatments done. Also going back to pulmonary rehab next week. I will not let CF do anymore damage. I'm done! -Katie

Long time

It's been a long time since I've written an update. Here's what's going on as of lately. 

Dalton's mom had a baby so we have a new baby brother! His name is Samuel and he is precious!! 

We have made a few trips to the doctor in Pittsburgh, been on ivs, rearranged meds, and everything is idle for now in that sense. No big calls or anything. 

Learning to adapt to this life as we call it a little at a time. I hate everything that waiting for a transplant has taken away for me, including people. 

That's it for now. No big news. No news is good news in my book. 

Oh I started selling Avon! If you'd like to order from me, you can do so at www.youravon.com/kprager

-Katie

Five Year Flashback

On this exact day 5 years ago, I graduated from high school & was also begging Natalie to keep singing the Climb to me. I'll never forget that night! The past 5 years have been full of every emotion you could think of.. I've done some things that I didn't even think I'd ever do. I have lived in different cities, got a college degree, got married, lost a sister, got 2 puppies, killed my pet fish Sushi, spent way too much time in the hospital, buried my Granny, spent time taking care of my dad after his horrible wreck, cried over lost CF friends, traveled, made relationships with people that mean so much to me, bought a house, bought Jake his first legal drink, became closer to my brother, mended broken relationships, and basically everything in between. When Dalton and I started dating and planning to meet, it was against our doctors wishes but we still did it. I told him that I'd rather live 5 years with him than 50 with someone I didn't have much love for. It will be 5 years on August 1st that I sent him that first message and now I'm waiting for my life to be saved (great timing God!). All in all, the past 5 years have been the busiest time of my life. I think it's best that I start knocking things off my bucket list. There are still so many things I want to do. This goes to everyone who has spent the last 5 years praying for me, praying with me, supporting me, loving me, and never giving up on me. Dalton and I are so blessed to be at a CF center that cares about us and nurses that love us and treat us like family. You guys mean the world to me. The only thing I have to say now is bring on the next 5 years. I'll never stop fighting and I'll never stop living. -Latie 💕🌹☀️

Hospital Update

 

Here is a little update for our followers.. Been in the hospital for over a week. Hope to go home sooner rather than later. <3 -Katie

*Insert Disease Name Here*

So for a while now I guess we have been on the path to the point of where we currently are. The point where it actually comes out of a doctor or nurses mouth that really hits you. This can't be my life, is it? I'm talking about when someone tells you that you have 'end stage -insert disease name here-'. In the case for us, we are at end stage Cystic Fibrosis. It is even weird to type out. I never thought I would come to the point where those words would become my everyday life, but they are. End stage Cystic Fibrosis. You know what that means? That doesn't mean its the end, it means that it's time to work even harder to see the next day.

Growing Up

I am so glad that my parents never sheltered me while I was growing up. In fact, I didn't really tell anyone I had CF unless they asked or needed to know and well now that it's obvious something is wrong (via the oxygen tank) it's hard to hide. Some parents shield their Cf kids from things and it's a shame. I lived a normal life and still do! I did what I

wanted in regards to sports, hanging out with friends, etc. I truly feel sorry for the children whose parents pity them and use Cf as a crutch. If anything my mom and dad taught me to be a stronger person because of it and never let it get me down. I will admit, and this is hard for me, there was a time when I was really sad because of how sick I was getting and I was living out of state and nowhere near my parents and I was a mess. Now that I'm home I spend my time trying to be closer with my parents and let them know how much I truly appreciate them. My mom and dad have always been my two strongest supporters and I can honestly say that without their push I wouldn't be half the person I am today. They are amazing and I'm so blessed that they didn't pity me or allow me to feel sick. I am who I am because of them and wouldn't change a thing. I Love you mom and dad! -Katie, Kate, Sissy, Princess

Just Waiting

The one thing I absolutely hate about social media is seeing how people my age, the people I grew up with are out ENJOYING their 20's. Yes, I'm jealous. Yes, I'm envious. Of course there's nothing I can do about it and allowing myself to feel sorry for myself is the last thing I'm going to do. I'm missing out on 'the best years of my life' and I'm not gonna sugar coat it, it sucks. It's so hard watching people go out and have fun while I sit at home.. But don't feel sorry for me. One day soon I'll have my new lungs. I'll be able to start 'the best years of my life' when my new life starts and that begins with new lungs! I can't wait to take that first deep breath! No oxygen, just the air around me! And after that, Dalton and I will definitely have the best years of our lives filled with things we can't even do in our wildest dreams. That's a promise. -Katie

Oops!

So I promised a post last night and I didn't get there! But here I am tonight. Better late than never! 

So I met with the guy about our TSHIRTS and I'm so excited about them! Not sure when they will be done but we should get a few here within the next week. I walked over a half mile tonight! It is so hard to get back in that habit and my lung is killing me right now but for someone on oxygen that is a huge step!!! I'm so proud of myself! Marley and Bo have been keeping me busy! They love to play every morning around 9 am! :) Lots of love! And thanks for reading! -Katie

Daltons Day!

In light of us being sick, I decided that I wanted to celebrate being out of the hospital and just give Dalton a day in which we could do whatever he wanted. Nothing was off limits! So, we went to Lexington and ate lunch at Olive Garden and then went to a gun shop! He had a lot of fun but we were both so tired after! We got home around 4 and have been laying around ever since! He is now eating dinner from Lees. That boy eats more Lees than anyone I know and I really don't like the smell of it! But, whatever he wants! Here are a few pictures! We are going to go through pictures tonight and watch movies. I love him! -Katie

Oxygen

If you have any questions, feel free to email me at pragercf@gmail.com. I would love to answer any questions or hear your thoughts on my video!! -Katie

:)

Just a Quick Update

Just a quickie to update you guys about us! Love to all you guys, thanks for reading!!! If you read 'LIKE' our page on facebook!!

https://www.facebook.com/dktransplant

-Katie

Whats Been Goin On

I figured I would give everyone an update about what has been going on. We haven't touched base on here in a while, so I figured before anything else happens that I may need to write about, this would be the best time to get caught up.
The past few days have been a whirlwind. I guess it started out Monday when Daltons heart rate when to 180 and wouldn't come down. So they took him to the ICU to monitor him and make sure he was okay. While he was down there they also put in a nerve block. A nerve block is basically they cut off the nerve endings in your spine to a certain place that is giving you pain. In this case, Dalton has 3 fractured ribs from coughing and while he is still coughing, it gives him a lot of pain. So this nerve block, which is like a fishing line that cuts off the nerve for a while, feeds his medicine to the site and supposedly makes it easier on him. He finally got back up to the regular floor last night, which I was so happy about! He is doing better and his heart rate is staying down and in normal range, well for him anyway.
Daltons dad and grandma have also came up here to stay with us and hopefully take us home. We are really hoping to go home soon. They are bringing us lunch today and I think Popeyes is on the menu! So we are both excited that we won't be eating nasty hospital food today. It gets really old, really fast!
I've been doing okay. Really having some problems with anxiety lately, Dalton has too. I think we just need to get out of here and that will work itself out. Being in the hospital takes a lot out of someone.
Well, there isn't much else to report.. Dalton wanted me to throw in a picture so thanks for reading and for loving us and supporting us! It means the world to the both of us. Also, please pray for Timmy Dotson who isn't doing too well, and my aunt Karen who is having surgery today and has been in the hospital a long time. Peace and Love. -Katie

Quick Note

If anyone has called us, text us, facebooked us, etc. We know you're there and you care even if we haven't responded. Not the best past few days. Thanks for understanding. I'll try to do a post tonight. - Katie

Just Wanted to Say HI!

Update

Dalton is feeling a little bit better. 

I was admitted yesterday. 

-Katie

Job

So, my blog has mostly been about health but I decided I would like to expand the topics that I talk about. I mean, in all honestly, our life pretty much revolves around health at the moment, but only if we let it and I am tired of letting that happen! So.....

I really want a job! I keep looking into the sell things from home deals. I just feel like it's a scam and I can't imagine spending money to start something and then never even make my money back. So, I have been debating on that a lot. Another problem with those things is that there are SO many people who sell things that it is hard to find people to buy from you. I'm really not sure if it would be worth it to sell anything or not. Any input? I just really want something to do to make money. I am tired of getting donations and not doing anything to get them. I hate donations honestly. That is mainly why I started making bracelets, got t-shirts, etc. So yeah.. I have always been independent when it comes to that sort of thing so being in this predicament is not fun at all.

I am going to see Dalton tomorrow. He said he is starting to feel a bit better. Bad news is that his score is back down to 41. They messed it up the other day and so it went back down. :( boo. I wish he would get his lungs soon. I am ready to see him healthy <3

-Katie

List Update!

 

If you would like to send Dalton a card go to  https://ecards.upmc.com/
Click on the card you would like
Under the hospital tab click on UPMC Presbyterian and you can leave the room number blank.. Just be sure to include his name!!


Also, to make a comment on my blog, go to the post you'd like to comment on. At the end of the post it will say NO COMMENTS or 1 COMMENT, ETC. Click on that and you will be able to make your comment.
Thanks! -Katie

Happy Sunday

Today is Sunday! Let us be glad and rejoice! I will be spending the day trying to be productive. Having Sunday lunch at my mamaws is my favorite tradition! Have a great day everyone! ❤️ -Katie

Keep on Waitin'

So I just have an update on Dalton..

He has been having severe chest pain for the past week/week and a half. He thought he had a broken rib from coughing so hard because of his allergies. Thursday he called CF clinic and told them he was in pain and they suggested he go to the ER. He had a massage scheduled to work on his muscles this morning and if it was still hurting he'd go to the ER for x-rays. Today it got to the point where he needed pain medicine and it was unbearable. So he went to our local ER and got the tests done (x-rays, blood work) and his x-ray didn't reveal a broken rib, it did however reveal that there are two ribs rubbing against each other because a muscle is pushing one rib into another. So he got pain meds to take care of that. His white blood cell count was also elevated and so Dr. Pilewski felt like it was best that he was transported to Pittsburgh. So, he is in Pitt once again on 7 south tower in Presbyterian hospital. I will update tomorrow once I know more. But for now all I know is that he's safe and sound in his room. 

I would really like if you all that read the blog do me a little favor. We are both always in and out of the hospital but it's always nice to know that someone is thinking of us. Could you please send Dalton an e-card? All you have to do is go to:

https://ecards.upmc.com

Click on a card you want to send

Type in Dalton Prager

Just leave the room number blank

And he is in UPMC Presbyterian

I know this would brighten his stay! Thank you everyone for all your love and support. New shirts coming soon! Stay tuned!!! -Katie

Update 3/13/2014

I love doing Video Updates! They are just so much easier to talk and tell you guys what I am doing or thinking than typing a lot.. Love to you all and thank you for reading! Please comment if you read. Would love to see who still reads after all this time. Sorry it is so long, I got carried away! And also sorry my voice is so deep and raspy, crazy weather!!! -Katie

Update

Yesterday went well. Dalton was having an off day to start off with but he is doing better today! They kept him on all ivs for another week, no big deal. Slight decrease in pfts. At this point in the game those numbers don't matter anymore. Will update his LAS score which will move him up on the list!

I had a great appointment. Probably the best in 6 months. I blame it on being active in the gym and getting out of the house more. I think it's really helped. Oh and eating ice cream with my 2 year old little cousin Alivia probably helped me put on a couple extra pounds! I am off all ivs. We both go back in a month. 

Thanks for all the love and support! Here's to kicking cf in the ass harder than ever!!! -Katie

VLOG :) Enjoy!

Just a little update for you guys in the form of a video :) Hope you enjoy and sorry for not keeping this up to date.. Will definitely try to do better! -Katie

 

Oxygen Update

Today is Sunday, February 9th which means that Dalton and I have been here for about 3 days. It feels like a lot longer than that. I had a scary moment yesterday. I was laying here half asleep and my oxygen somehow came off of my head and by the time someone checked on me my o2 sats were 72%. They are okay now though and I am not letting my oxygen fall off! Everyone have a great Sunday. Peace and Love. -Karie

Hospital Update

Dalton and I went to the ER yesterday with complaints of shortness of breath, coughing, coughing up blood, fever, etc. We went to our local ER in Flemingsburg and Dr. Pilewski thought it would be best to transfer us by ambulance to Pittsburgh. I'm not feeling well and am barely texting as of now. So please don't think I'm ignoring you I just need this to pass. Thanks for the love. -Katie

Curvy

I will be 24 this year, I am 5'4" and 90 lbs. The only 'curves' I have area hip bones that stick out on either side. I don't have much body fat. Recently, there have been many conversations and pictures that float around the news, social media, etc. that being underweight is gross. I see things like 'curves are sexy', 'nobody wants to be with a bag of bones', 'real women have curves', etc. all of the time on social media and other places too. Well, I am here to say that a 'bag of bones' can be sexy too. Just because someone doesn't wear a size 4 or 6 doesn't mean that they starve themselves. Have you ever thought that someone might have a problem gaining weight? There isn't a certain way someone should look. I hate when people are all about obese people being okay with having curves but I can't be okay with not. No matter the size, I think we should all feel beautiful! -Katie

  I love my skinny arm during blood draws!

Gym- Day 1

They say the first day is always the hardest and they are right. It took a lot of motivation just to put my shoes on but I did it and I made it back to the gym! It felt so good to get back there. Just gotta keep on, keepin on! Maybe I can even work myself up and get rid of this oxygen. That would be awesome! Here's to many more days of working hard! -Katie

So Tired.

So yesterday I finally spent Christmas money and went to get my hair done. Everything I do, even at home, makes me tired. I'm always tired or lazy! Anyway, it took 2 hours to get my hair done and I even joked that I would go home and immediately go to sleep because of how tired getting my hair did made me (doesn't everyone get exhausted siting in a chair)!? So I get home yesterday around 2:ish and didn't even take off my shoes. Dalton had a glass of water and my oxygen for me and I crashed on the couch. Around 5:00 I woke up and thought I was gonna stay up so Dalton and I talked about what we wanted for dinner. He decided to make something and I asked him if he would care if I could just lay back down for a while. So I went back to sleep (still in my jeans but now without shoes and now in my bed)! I fell back asleep and when dinner was ready I woke up and ate. I was still hungry but I told myself I would eat in just a second and after just a few bites I fell asleep. I slept from 6-11 and then Dalton woke me up to go to bed. I thought for sure I was going to be hyper and not be able to sleep and well by 12 the TV was off and I was back in bed and I was asleep. This morning I woke up about 9-10 and it is now 1:30 and I'm exhausted. I am supposed to go to the gym today. I may take a nap before I go. I am so tired! Trust me, I'd rather work all day than nap all day! Someone give me energy!!!! -Katie

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I have so much on my mind that I just can't simply put it onto paper. 

Puppy Blog Part II

This picture was taken back in April 2011. We had Marley for a little over a year and we had just gotten Bo. Bo was so small back then. He was actually about the same size as Marley. And Marley is about 15 lbs. Bo (as you learned in the puppy blog part I) is a rescue dog. When we got him he was terrified, a nervous, anxious wreck, and just a very hurt, abused puppy. We have worked and worked with him. He still has his days, but they are few and far between. He especially likes to protect me, even from Dalton sometimes, though he loves Dalton, you can just tell. Here's just a funny time in Bo's life when he was a puppy and learning...

After Dalton and I moved out of his grandmas house, we moved into an apartment in St. Charles, MO. It was a cute apartment. You walk into the front door and you are standing in a hallway to the left of you is the hall leading to the living room and to the right it leads down to the bath and bedroom. Well, we kept Bo and Marley in two crates every time we would go somewhere. Bo hated being in his crate. He would hide under the bed, in the bathroom, under the couch, under the table, just to get away from the crate when he knew we were about to leave. Well we started outsmarting him and closing all of the doors and he would sit at the end of the hallway and he could look down the hall and see his crate and we would say 'come on Bo' and he would back up to the bedroom door as close as possible and sit there and stare at us. At the time all we wanted was to leave to get to our job, date, etc. but looking back, it is so weird how scared of the crate he used to be. It must have been from all of the abuse he had gotten I think. Now his crate is referred to as his house and he has no problem. In fact if he knows we're leaving, (we put our coats on and take them outside to potty), when he comes back in, he goes straight to his 'house' without being asked. That's my boy! -Katie

Transplant Update

I had my first transplant call last night!!! It was my time to get new lungs. I called them back but it ended up being a no go. But if it was meant to be, God would have let it happen. It wasn't meant to be. I'm not sad or upset that I am not getting my transplant today. I am feeling happy and hopeful that I'm close to receiving the gift of life. Please pray for the donor family who lost a loved one last night, wherever they may be. -Katie

Puppy Blog Part I

They are the two cutest creatures in the world! They both have four legs, and like to sniff each others butts.. Anyone know who I am talking about? It's our puppies, Bo and Marley! I really felt like blogging but had no idea what to blog about so I figured I would throw a little puppy into the mix! (Thanks to the suggestion from Wendy Cherry)

Bo---------------><---------------Marley

On the left is Bo. His birthday is Nov. 2, 2010. He was a rescue puppy. We got him from a pet store called Petland in Missouri. When they received him, they said that he was malnourished, had worms, and was just a very sick puppy. Nobody had ever properly taken care of him... When we went to the pet store we were actually going to get his brother because his brother was more playful and Bo just sat there right beside Daltons leg and wouldn't really move. He was quite shy, and a little anxious. But, Dalton wanted Bo so that's the one we got. I'm not really sure where the name Bo came from either but we had it picked out before we left the store. We took Bo up to the counter to pay for him (and all his treats). We sat him up on the counter and that's where it all started, he peed all over the counter. Little did we know that would be the beginning of what I like to call the disaster toddler puppy! 

On the right is Marley. She is the first born and her birthday is Dec. 22 2009. Dalton and I moved into our first apartment together at the beginning of 2010 and of course we wanted to have a little family. We went into Petland thinking we would get a gerbil or a hamster. Those things are easy enough to take care of. If we want to play with it, get it out of its cage and put it in the ball and watch it roll across the floor. Easy, peasy. Well, we walked into the pet store and after playing with just about every hamster and every gerbil, I was bored. None of them wanted to play and they all hid from my ginormous hand every time that I reached down into their cage! So I just looked at Dalton and said, 'let's just look at the puppies'. They were all SO cute! I wanted to take them all home. Every cage I walked past the price tag seemed to increase, $600, $700, $1000. I am sorry, I love dogs as much as the next girl but there is no way I am paying that much. So we went up to the pet store employee and asked, 'what is your cheapest dog?' That may seem funny to some but we were serious. The guy pointed over to a cage with a puppy bulldog and a puppy cock-a-poo (which is Marley). The bulldog was laying in the cage trying his very best to sleep while Marley was hopping up and down, wall to wall, trying to play with him! When we said we will see her and they took her out of the cage it was like we saw the bulldog take a sigh of relief! After a while of playing with her we decided we would take her! Come to find out she was next on the chopping block too.. Ya know, they can't keep those puppies forever. Sad but true. So we got Marley and all of her treats and toys and took her home. I will never forget her ride home. She had an Easter scarf on and it was raining. She sat in my lap in the front seat and shivered and hugged my arm all the way home.

Stay tuned for my next puppy blog where I tell you all about the adventures of Bo and Marley!
-Katie

Drowning

Imagine this. You are swimming in the middle of the ocean. You aren't sure how you got there, that's just where you woke up. You can't see anything or anyone else. All you can feel is the weight of the world on your arms and legs. You're finding it so hard to swim so you lay idle trying to catch your breath and get some rest. After a few minutes you decide to start swimming again. It's so hard to swim and you start to struggle. You are slowly going under and coming back up. You go back under and this time get a mouthful of water. Thankfully, you come back up and cough it out. Your arms and legs aren't working together to successfully swim and you go under yet again. You are drowning. Panic sets in and you start wailing your arms and it only makes it worse...

Now, imagine this. 

Imagine every minute of everyday it feels like you are drowning. Imagine waking up coughing and struggling to breathe. Imagine that no matter how much oxygen you have attached to your nose that it feels like you can't get a good breath in. Imagine you are drowning. 

This is what I feel like everyday. No amount of oxygen or breathing treatments or exercise make it better. Everyday that I wake up I automatically feel like I am in the middle of an ocean, drowning, with nothing to save me. The smallest movements can make me feel so short of breath. I need oxygen with every step I take. Sometimes things get so bad that I literally scream for help while gasping because I don't know what else to do, there's nothing I can do about the feeling. 

The only thing I can do now is push forward. I smile and know that one day I will get my lungs! -Katie

Update

So, it's Friday, Jan. 10th! I haven't wrote anything in quite a few days so I will just do a little update! We had an appointment on Wednesday. Dalton's PFTs were 17% and he weighed 107. So he lost a couple pounds but wasn't too bad. He is staying on IVs for another week just because he wants to and other than that all is well. My PFTs were 15% and I weighed 90 pounds. I took myself off of IVs. I am done with them for a while. They don't seem to be doing anything anyway! 

Nothing else is going on this way. We had a calm Christmas and New Year. Our next appointment is Feb. 5th. I will update again before that though.