Kidneys

I really need prayers right now. All I want for Christmas is my kidneys to work. Right now I'm doing dialysis 4 times a week and when I get discharged from the hospital I'll have to do outpatient dialysis. I really hate dialysis and pray to God my kidneys start working. I don't want to go through another transplant. Katie 

Rehab

I am now in physical and occupational rehab. I actually moved floors from 9 in Presby to 11 in a different hospital a street away. I like rehab because they work you hard! 

I'll get to go home on the 25th, atleast that's the projected date. I won't get to go home as in Kentucky, but I'll get to leave the hospital and go to the apartment that my mom has rented and has been staying at since June. My goal is to be home in Kentucky by Christmas. I've had that goal for a while now, and I'm destined to make it happen. 

Since I've been in rehab, I've made so much progress. I can sit up from my wheelchair by myself. I can climb a flight of stairs. I can get up from the couch. As this next week progresses, I know I will continue to complete my goals. My biggest goal I have is that I want to walk with no assistance, which I am already doing, but I want to be more stable with my walk. 

I will keep working hard! This next week is going to go by fast. Make sure to keep up with my progress! Katie

Love

Love is a beautiful thing. 

Some are lucky enough to find it in this life. 

Others aren't so lucky. 

Where do you fall. Are you one of the lucky ones. 

Me

This is me. My trach is capped which means I am only breathing with the help of very little oxygen through my nasal canula. Tomorrow I hope my oxygen needs are less. Everyday is progress now. Everyday is a blessing. 

Amen

God is good, God is great, thank you for my lungs. Amen!

25!

August 26, 1990, I was born! That's right, tomorrow is my birthday! I am quarter of a century years old. I can't believe it! The past few years have been some of the hardest but I'm in the homestretch now. I'm making it through. I am so close to being the healthiest I've ever been. It's like this birthday is my year to start over. I can't wait! Thank you guys for following my journey! Katie

Another OR Day!

Well, I went back to the OR today. I've been going every other day to have the wound vac on my chest changed and cleaned. Mom went home today and so dad is staying up here now. Here's hoping to getting better and moving forward in the right direction. Please keep praying. I need them. 

Katie 

Giving Up

Since my blog post from yesterday, many people have told me to keep fighting and not to give up. I just want to assure everyone I'm far from giving up! I didn't come this far and work this hard to give it all up now. My fighting gloves are on. I may have a lot of set backs but it's not gonna tear me down. 

Katie 

Wow!

I haven't updated my blog in so so long. Since I've updated back in June there have been so much that has went on. Let me update!

Sometime in June I became unable to breathe and was put on the ventilator. On July 9th, I received my life saving double lung transplant. The road to recovery has been hard ever since. It's been a month and a half and I still don't know what it's like to breathe well. I've went back to the OR a few times. I have a wound vac on my chest because I had an infection and I wasn't healing. I have also dealt with pneumonia. I went down to two chest tubes but now have three (I got a new one yesterday). I am back in the ICU and have been since yesterday. I hope to get back up to the 9th floor tomorrow afternoon or the next day. I was hoping to get out of the hospital by my birthday but unless something drastic happens, I won't be. I ask everyday to go home and they keep saying I'll make it but I'm not sure I'm believing them anymore. 

Can't Take This

.. The past 3 days I've been scratching my skin off, literally. I'm so itchy. I'm so uncomfortable. I'd rather be covered in bee stings than this. I need relief. -Katie 

List!!!

I am officially on the LUNG TRANSPLANT LIST!!!!!! Yay!!!!! 

Dalton is also doing better. He has had a rough past few days. He was on the ventilator and wasn't doing too well. Thankfully things are starting to look up for him. -Katie

Update

I'm feeling really sick. I'm worse than I was last week. My breathing is so bad I literally want to crawl the 10 feet to the bathroom. Bipap is being used during the day and settings need to be readjusted. My blood levels bounce around and stay out of whack. Kidneys are problematic. I've never ever felt this bad before. I keep reminding myself that good things are coming! My transplant is gonna get here and I'm gonna LIVE not just survive. I have more mental strength than I will ever have physically! I'd give anything to go home, even the doctors would like for me to go home because it'd be good for my mind but I just can't make it. I really want my family to come to me. More than anything. 

Good news update: I've been accepted by insurance and UPMC to be reevaluated!!!!! Still not out of the woods yes but it's actually starting to happen. I can't believe it!!!! Please God let this process work out. I need it more than anything. I should be getting transferred by air within the next few days.

I love you guys  

-Katie

                        My new port!!

Lonely

I'm just feeling down today. I am lonely even if I have visitors. I want to go home. Maybe next week I will get to go home for a bit before going to Pittsburgh they said. I miss my dogs. I miss living. I hate seeing everyone around me live and go about their normal lives when all I do is sit here and get pumped full of meds to stay alive. It sucks. It really sucks. Today just sucks. -Katie

Saturday

The days drag on but go by so fast. I'm feeling sad today. I don't know why. -Katie

I Miss You

Oh Mamaw, I wish you were here to see and read everything going on. You'd be hootin and a hollerin (your words not mine)! I miss you every single day. I don't go a minute without thinking about you I feel like. It's not a bad thing. Reality still hasn't set in yet since after your funeral I came straight to the hospital. I miss calling you. Come visit me tonight in my dreams. I'd love to tell you everything for myself. I love you. Good night. See you soon. ❤️ -Katie

Update

So today.... There are new updates! I don't feel like doing it myself so from the words of my cousin, Heather!

I am sure you are seeing a lot of updates from the media about Katie and I want to give you an update as well.  

We don't have a lot of details YET! We have been told an agreement has been made between Pittsburgh Hospital and Ky Medicaid, however we are waiting for official word and documention before we get too excited. 

We are hopeful that Katie will soon be in Pittsburgh hospital on the transplant list. As of now she is at UK Hospital. Dalton was released from Pittsburgh today and came to the hospital but was not allowed to come in Katie's room.  

We will keep you updated and can't thank everyone enough for your prayers, support, donations and sharing their story. Keep praying we are getting closer everyday.

I seriously love you guys. -Katie

                ❤️My Whole Life❤️

Port Surgery

Today I had a port surgery. I hope now it is fixed once and for all! I am excited to get to use it in a couple of days to compare to my past couple of ports! 

So, on the fundraising end of things, things are awesome!! I can't believe how amazing you all are! Many people have asked "what happens after you raise $50,000?" Good question. I'm hoping insurance will follow through and even if they do, we still have many other medical bills and the after care cost of transplant is crazy. All funds will go towards transplant so don't worry. 

If you still want to donate you can at:

www.youcaring.com/dkprager

And we have just a few days left to sell our shirts at:

www.booster.com/dkprager

I sincerely love you all. And thank you so much for all you have been doing!

-Katie

         Some friends came to visit ❤️

CNN!!

http://www.cnn.com/2015/04/01/health/cystic-fibrosis-lung-transplant-couple/

Ahh!!! Is this real life!? Finally! Thank you CNN! Mine and Daltons story is finally out there. We are finally getting our chance to be heard! We are finally getting our voices in the ears of people who will be able to help us. We want this more than anything. A lung transplant for me would be life changing not just for me but for Dalton as well. We can't be together and as our 4 year anniversary approaches, that's all we want. -Katie

News Story

Click on the link to view Channel 27 Newsfirst on Saturday evening, March 21 located in Lexington, Kentucky.

http://www.wkyt.com/home/headlines/Fleming-county-woman-raising-money-for-lung-transplant-297126871.html



There was also a news story in the Maysville Ledger Independent done on Friday regarding Dalton and I. Thank you for your well wishes and prayers! This is OUR YEAR to shine!

http://www.wkyt.com/home/headlines/Fleming-county-woman-raising-money-for-lung-transplant-297126871.html

-Katie

Thankful

I am so thankful for the opportunity to share mine and Daltons story. Although I wish we weren't even in this predicament, I can keep fighting because I know there are people standing behind us and cheering us on. Thank you all for all of your love and support. It's everything I need right now. -Katie

Dalton and Katie- August 2014 

Tuesday....

Today has not been a good day at all. I have been in a lot of pain today from this kidney stone business. Nothing helps. The only thing I am focusing on is getting rid of this and trying to get this transplant goal accomplished. Unfortunately, not much has happened and doctors just keep telling me how wrong it is to be treated the way I am being treated. At least someone is on my side!! (Along with all of you)!

I'll throw a couple of updates at you: 

1. My feeding tube is making a lot of noises. It sounds like its 'tooting'. I actually get amusement from it, along with everyone I show the video to! Maybe I will post it later!! It shouldn't be making this much noise so surgery is supposed to be coming up to see if the size needs to be changed. Oh and it's leaking so there is no use of using it if it just leaks and doesn't help me gain weight!

2. I've been having major port-a-cath problems. With having my port I should be able to receive IV antibiotics, the nurses should be able to draw blood back for labs, and it should be fairly immobile when it comes to laying under my skin. The problem with my port is: no blood return, ever, very mobile that I don't even feel comfortable accessing it myself usually (and I've been accessing myself for 5 years now). I might add that the woman who I only let touch it agrees that I need a new one. But, since the port is still infusing antibiotics, they wont change it. Oh well, it could be a LOT worse and all I want to focus on getting this transplant. 

3. There have been a lot of people sharing mine and Daltons story and I appreciate it so so much! I can't even explain the love and support I feel. Dalton and I just want to be together and until my transplant comes, we aren't allowed to be. I hope to continue to get the word out and maybe eventually Dr. Phil, The Today Show, or Ellen Degeneres will call me and tell me how ridiculous the insurance companies are! Ha, kidding aside, I just want fair treatment like everyone else. Thanks to you all sharing though, I have complete faith that my time will come. Besides, I have some of the most awesome guardian angels watching over me that I know things will work out!

Forget me for a second, I have to focus on how AWESOME my husband is doing!!! Today marks Daltons 4 MONTH LUNG TRANSPLANTIVERSARY!!!! We are so thankful to his donor and not a day goes by that we don't give him thanks. I know this time of the month is very hard for a family because it marks the day that a person lost their precious life. Where ever his family is, please know that Dalton is taking precious care of the lungs he received from your loved one! Dalton now has all of his chest tubes out and he might get to leave Pittsburgh soon! He never uses oxygen, his smile lights up a room and he simply looks amazing. He looks better now than when I met him (I didn't know that was even possible)!! 

So, in every negative situation, just know that there is a positive aspect you can be looking at. With this negative insurance issue with me, I just look at how well Dalton is doing and how great he looks and it brings tears to my eyes. I thank God every single day for his donor.

Finally, before I started feeling extremely bad, t-shirts were in the works and I was going to get them made through a local person and mail them myself. At this time, we are really tied down without even thinking about the shirt situation so unless I find a decently priced online donor where you can order them online, it will be put on hold. I have a couple of sites I am looking at and if anyone else have any ideas, feel free to speak up! We have our design, we just need an online printer so we don't have to deal with picking them up, shipping them ourselves, etc. Too much stress! So, if you have a site you recommend, let me know!

I just wanted to give you all a little update. Thanks for helping me spread the word. I hate bringing this attention to myself honestly, but I really am not done living. I haven't even started yet it feels like on some days. Dalton and I have so many things we want to do and I can't wait until we both take a deep breath in, hand in hand, and set out to tackle the world!!! I love you guys!

-Katie

www.facebook.com/dktransplant

www.youcaring.com/dkprager
http://dkprager.blogspot.com

#TeamPrager

#PrayersforthePragers

#LungsforLove

Dalton & Katie FaceTime 3/16/2015

What a Monday!!!

Wow! That's all I can say! I am in tears over how many people who have shared my blog post from this morning and mine and Daltons facebook page today. I have heard from people who I haven't heard from in years. I just honestly have no words but thank you so so much for spreading the word! -Katie

New News

It's 9:33 am, Monday, March 16th. I have been here for 16 days and there is no end in sight. At first, the doctors were optimistic about me getting a transplant and me getting transferred to Pittsburgh so easily. Now, my doctors are saying that I need to contact my state representative and go to media about nobody wanting to pay for my transplant. I've become the dreaded dollar sign and to anyone that matters to me, I don't matter to them.
There has been a lot done to try to get me my transplant. I'm not going to give up on the idea because it's too easy to dream about healthy lungs. I often wonder how Dalton feels. I wonder what on Earth it feels like to take a deep, easy breath. The truth is that I may never know.
When a doctor comes in and tells you to take your 'story' to the media, it's never a good sign. I guess this is where you come in? Share my story. Share my blog. Share my facebook page. With the help of my mom and cousin have written up something to hopefully get my 'story' out there. I call it a 'story' because to everyone it IS just another news story. To me, it's my life.
Stay tuned to learn how you can help get my story out into the public. Information will become available today and maybe I can finally get the second chance at life that I feel like I deserve. I hope I deserve. -Katie


This link is up and working. Please don't feel like you have to donate. I just want really want prayers and attention to the insurance to make them pay.

http://www.youcaring.com/medical-fundraiser/help-katie-breathe-/71290

Bad Friend

I'm not sure but I don't think I'm that good of a friend. I get upset because I feel like I don't have any friends but maybe it's me. In fact, it is me. I'm not a very good friend at all. I guess I'm a homebody and am not good at making friends which leads me to look really stupid in social situations. I don't know, this is 4 am rambling.
Things like this go through my mind all of the time.

#Color4Kids Project

My name is Katie, I'm 24 and I have Cystic Fibrosis. My husband who also suffers from CF received his life-saving double lung transplant in November (go to our facebook page to read more about us). I am starting a new project in hopes of bringing some smiles to children that have been diagnosed with Cystic Fibrosis or other diseases all around the US one page at a time! My project is called #Color4Kids. 

How it works: You (the parent or guardian) private message me your address and your child's name and age on facebook or through email. In turn, I will color them a picture and send it to them in the mail with a tiny message of hope and love. Something as simple as coloring a picture and a few words of encouragement can make someone's day just a little bit better. When your child receives their picture, please post it on facebook, Instagram, or any other social media with the hashtag #Color4Kids. It would be awesome if you took a picture of your child holding their picture but understand if you would like to keep your childs face off of the Internet. 

If you have a child who is battling any kind of illmess, please message me! I don't share personal information with anyone and if there are healthy siblings in the house be sure to include their names and ages as well! 


Katie Prager
www.facebook.com/dktransplant (Our Journey)
Instagram: @kprager90
Email: kprager90@gmail.com

25

I desperately don't want to be 25 this year. -Katie

Mamaws Bedroom

I am sleeping at my mamaws house tonight. I'm in her bed and it's 3:30 am. I can't sleep. I have a migraine and so many thoughts are racing through my head. I can't remember the last time I slept in this bed but it's been years. I used to spend the night with my Mamaw on a regular basis when I was little, we all did. My childhood is this house with my Mamaw. As I lay here, I can't help but think of the countless hours that we didn't sleep because I always asker her to tell me a story. She would tell me stories of when she was growing up and when she was a child. I always looked forward to hearing her stories. 

My favorite story that she told me was when she got stuck in a briar patch on her way home. I don't know why that was my favorite story but it's the one I remember the most. So many memories laying in this exact spot. My side. 

I love you Mamaw. 

-Katie

#Color4Kids

My name is Katie, I'm 24 and I have Cystic Fibrosis. My husband who also suffers from CF received his life-saving double lung transplant in November (go to our facebook page to read more about us). I am starting a new project in hopes of bringing some smiles to children that have been diagnosed with Cystic Fibrosis or other diseases all around the US one page at a time! My project is called #Color4Kids. 

How it works: You (the parent or guardian) private message me your address and your child's name and age on facebook or through email. In turn, I will color them a picture and send it to them in the mail with a tiny message of hope and love. Something as simple as coloring a picture and a few words of encouragement can make someone's day just a little bit better. When your child receives their picture, please post it on facebook, Instagram, or any other social media with the hashtag #Color4Kids. It would be awesome if you took a picture of your child holding their picture but understand if you would like to keep your childs face off of the Internet. 

If you have a child who is battling any kind of illmess, please message me! I don't share personal information with anyone and if there are healthy siblings in the house be sure to include their names and ages as well! 


Katie Prager
www.facebook.com/dktransplant (Our Journey)
Instagram: @kprager90
Email: kprager90@gmail.com

Normal

I'd give anything to be a normal 24 year old. All I want is a job, a life. This is no life. I'm stuck in limbo. I spend 95% of my time at my house in bed. It's miserable. Don't feel sorry for me. I'm not used to this. I wasn't raised to be this way. This isn't a life. This is hell. -Katie

My Night

seriously feeling flat out miserable right now in every way.

New Drugs!

So, for the longest time, I have prayed for this. Before I met Dalton, before I got oxygen, before I was referred to the lung transplant program, I prayed for this. Now, it is finally happening! No, this isn't a cure, but this medicine will help patients with Cystic Fibrosis more than it ever has before!!! I urge you to check out the link!

http://www.cff.org/pipeline_mobile/details.cfm?id=86

The new drug will help CF patients with double deltaf508 (my mutation) to tackle the problem at the cellular level. Pretty awesome news.

I'm still waiting on anything to be done with my insurance so I really have no clue what's going to happen. Even if I do get insurance back, I might try to stick it out to wait for this new medicine. I realize I'm really sick and this may not help me, but I'm willing to try anything before I get a transplant.

I'm sure some of you don't know, but with transplant, you're basically trading one disease for another. Sure, you may be able to breathe but there is so much that comes with getting any kind of organ transplant. What some of uou may not know is that you're even at a higher risk to get Cancer. (One of my CF friends is currently battling that).

A lot of people don't understand this but... Transplant Is Not A Cure.
-Katie

2 Months Post Transplant

Today marks 2 months since Dalton got his transplant. He continues to make progress in his healing everyday. I am so proud of him. He finally has his trach out and all chest tubes except 3 (2 of those might get taken out tomorrow!). Other than his chest tubes, he's doing good. I honestly am just so happy for him. I can't even imagine what it feels like. Here's to 2 months post transplant Dalton! You're awesome!
As for me, no updates. I still don't have insurance that will cover my transplant and it is way too expensive to even think about me paying for it. Since I got discharged from UPMC, I have pretty much been on ivs the whole time except for a few days. It's not fun at all and I never get out of the house. I would love some energy just to go to Walmart or something. I hate being locked up in here. There's really nothing to update. Daltons improving and that's all I pray for. I'm so happy -Katie

Sunday Morning Early Update

The past week was a very emotional and trying time for me. At the beginning of the week, I honestly wasn't sure where mine and Daltons future was going to go. So let me begin...
Dalton got his transplant on November 17th and has been in the hospital ever since. There have been some setbacks (quite a few actually) that lead me to pray harder than I ever had in my entire life. After Dalton got his lung transplant he started rejecting his new lungs (very common in the first year or so). Although I knew it was common, it didn't make it feel any better. So they started him on thymoglobulin to treat his stage 3 moderate rejection. The stages for rejection are as follows: 0 being no rejection and 4 being severe rejection. There had also been problems with his lungs, developing a new bacteria and no sight of chest tubes being taken out (and there were 5 of them). So anyway, he has had a really rough past few months. Fast forward from all the horrible news and mess that I got from early in the week to today. Dalton texted me and it was a picture of him. No oxygen and no trachea hooked up to anything! He was breathing all on his own!!! Can you believe it!? I was ecstatic! So I'm guessing the thymoglobulin is working!

On a side note, my aunt passed away at 3:00 yesterday afternoon. She was really sick but she didn't lose her battle, she won. And now she has the ultimate prize. Fly high, Karen. -Katie