Update from Missouri

So Dalton and I came to Missouri last Thursday for a few days to visit some people for the last time for a while and to also have our Pre-Transplant BBQ! The BBQ was a huge success and we had so many supporters there!!! We also sold tons of t-shirts and support bracelets! It feels so great to have so many people who love us!
Saturday night I also had a surprise graduation party! I was excited and couldn't believe it!
We had family pictures done with everyone and it was great. I'm so glad we we were able to get family pictures with Dalton's cousins, Kayla and Hannah, because after transplant we won't be able to be with them because they have CF. The fact of the matter is we won't get to hang out with anyone; CF, pre-transplant, or post-transplant. This is one thing that hurts me the most. Three of my best friends have CF and will be pre-transplant. Kayla, Hannah, and Lauren have been my go to girls. I can always trust and lean on them for anything. We have so many great memories that I will always cherish and I love them all so so much. I'm so glad they were all there to send us on our way on Saturday night. They are the three strongest ladies I know and I'll always be right here just a call or text away. I love you three to death! <3
I'm making myself sad because this weekend really hasn't been the easiest. A lot of things just coming up now that we are getting close to transplant but only God knows the plans he has for us.
Thank you to everyone for your support, love, concern, and donations. We love you! Will be going back to Kentucky first thing tomorrow morning. -Katie

Road Trip!

Hello Monday

Today started off just like every other day pretty much with blood draws at 9:00 am! There really is nothing new to report about anything. We are really just playing the waiting game and trying to get out of the house as often as possible. My mom is taking us to dinner later on so that should be fun but those are the only plans we have for the day. Tomorrow Dalton has an appointment in Westchester, OH (to be honest, we have never even heard of that place) to meet with a sleep study 00doctor so we can finally get going on this bipap deal. We are both still on IVs and it looks like we will miss pulm rehab again tomorrow because of his appointment. I think it will be okay, we will do enough running around tomorrow without rehab! I am still working on bracelets and we now have our purple 'Dalton and Katie' bracelets in. If you would like one, they are $3. I will tell you how to get one at the end of the post. Yesterday at church they took up a special Love offering for Dalton and I. I am seriously so amazed at how many people show Dalton and I such love and compassion. Everyone is always praying for us and we can really feel all of the support we have from everyone. We honestly wouldn't be able to go through this without everyone and we feel so special to have so many people care. I hope everyone has a happy Monday!! Remember, you woke up this morning, it is going to be a good day.
-Katie

*If you want an awesome Dalton and Katie Love Conquers All bracelet, message me your name and address at pragercf@gmail.com or on my personal facebook page after you donate $3 to www.gofundme.com/dkprager. (I think the min is $5 but the extra $2 helps pay for shipping on all of these orders). If you want more than one just let me know in the message and each bracelet is $3!





Hard Work DOES Pay Off

I graduated high school in 2009 and since that time, my hospital visits have become a lot more frequent. I started at Maysville Community College in 2009 and when I moved in January 2010, I transferred to St. Charles Community College. It takes most people about two years to graduate from a community college with an associates degree and most decide to continue their education and pursue a bachelors degree. I have been in and out of the hospital several times the past few years and have had to drop classes, have gotten behind, worked extra hard to get caught up, and done everything I could do to make sure I could cross off 'Graduate from College' on my bucket list. When we moved back to Kentucky last May, I found out what classes I would need and how long it would take to graduate. I found out that I could graduate by next spring if I crammed a few extra classes in. Well, after a couple of crazy semesters; in and out of the hospital several times, getting used to 24/7 oxygen, transplant evaluation, and pulmonary rehab, I can officially say that on May 10, 2013, I will be able to cross off 'Graduate from College'.
I am so happy with myself and although it is just as Associates degree, no one knows how hard I have worked for this. I have taken piles of classes, worked extremely hard when I felt good and when I didn't, and done everything in my power to accomplish this goal.
I want to give a special thank you to my advisor, Wendy Noble. She has worked with me to make sure I have everything done in time for graduation. She has been amazing to work with and has really helped me through this semester.
See ya at graduation!!!
-Katie

CF Clinic

Dalton and I had our CF appointment in Cincinnati yesterday. There really were no changes at all. Our doctor added some medicine to our daily routine, but no big deal. PFTs the same. Still on IVs and probably will be for another week or so. We have an appointment with the ENT doctor on May 7, as well as a CF appointment. We are still dealing with insurance issues for transplant. Hopefully this gets dealt with tomorrow and we can move forward with this process. We are going to St. Louis next week to visit and then probably move to Pittsburgh. I am not quite sure how this is going to go but it will work out!
Dalton and I missed pulmonary rehab today because of lab draws so we went to the bowling ally. We were the only ones there, imagine that on a Thursday afternoon. Will keep you posted if anything changes. -Katie

Savor The Moment

Today is just another step forward,  as is everyday. Since Katie and I will have to live apart from eachother during the time between our transplants, we're savoring every minute we have together. Ever since we got married we've only spent a few days apart at most. I pray our separation will be short. It's going to be hard on us both to go through everything with only webcam and phone calls for communication. So today, we're going to try and have a little fun. Maybe a movie or something. There's nothing like a good old fashioned date to stir things up a bit!  -Dalton

No Hospital For Now

Dalton and I are both on home IVs. We started today. We go to our appointment in Cincinnati on Wednesday. Not much else to report.

Reflection

I don't claim to be the best Christian. In fact, up until recently I hadn't regularly attended a church service of any kind since 2009. But this morning I was reading in my book titled, Jesus Calling. The book has devotions for every day of the year. This morning it hit hard. It starts out saying; Trust Me, and don't be afraid. Many things feel out of control... It goes on to say; Let Me lead you to the rock that is higher than you and your circumstances. These words spoke to me this morning. Dalton and I are in a very crazy situation right now and the only thing we can do is trust in God to get us through this. I just really felt that what I read this morning was uplifting and so true. Have a great day!!
Don't forget to tell my little brother Jake a Happy 20th Birthday today!!! Love you!! -Katie

Breakfast

Dalton and I are just enjoying our time together. We put on pajamas and made breakfast for supper tonight. We had fun together.

Discouraged..

Ever since I found out that I'm not eligible for the list yet I've been feeling pretty down. How much worse does this have to get until I can be listed? My quality of life sucks. I want to go out and be 22. I bet all of my friends from from high school are out tonight living it up. (I say high school because I haven't made any new friends since, I don't really leave the house.) No one even asks me to do things anymore because why ask someone who never comes. They don't know how bad I always want to say yes. So, some of my high school friends may be partying, thinking about going to Keeneland tomorrow, out driving with nowhere to go and I'm here at home. I was in bed watching TV at 8:30. I am mentally and physically drained. I know my new chance at life will come but why not yet? I'm trying to stay positive right now but even the thought of getting out tonight and going to have a drink sounds like torture. The thought of dressing up cute tomorrow in high heels and walking around at Keeneland sounds impossible. When will I get my chance to have fun, when I'm 30 and everyone I know has a kid and is staying at home changing diapers? I'll be like the old guy at the end of the bar who is drinking by himself. Of course some people my age have kids, and yeah I'd love to have a child. Anyone who knows me knows how crazy I am about Marley and Bo, our puppies. But, guess what? Like my life is being stolen from me now, it isn't possible for dalton and I to have kids now or later in life. What am I supposed to be looking forward to? -Katie

Transplant Update

The call that we have been waiting since Tuesday night for came today. There is good news and not so great news. Things could always be worse though and that is what we are focusing on at this very moment.

The good news: Dalton is ready to be put on the list. As soon as we get all of his insurance stuff worked out, he will be listed. This could be as early as Monday.

The not so great news: Katie isn't being listed at this time.

When we talked to our coordinator on the phone he said that we were both very good candidates for transplant. Dalton is sick enough to be put on the list and that is why he is getting listed now. However, Katie is on the line of sick to where she doesn't have a good quality of life but not sick enough to take an organ out and replace it with a new one. This isn't a huge problem because Katie could be listed in a couple of weeks, just depending on her health, or it could be another year (most likely not if you know her condition right now).

This is good news and bad news. Good news, because Dalton is getting another chance! He will hopefully soon, be getting new LUNGS and his quality of life will be amazing. Better than he has ever known it to be. Bad news because the time between Dalton getting a transplant and until after Katie gets her transplant they will not be allowed to see one another. They can be together all the way up until Dalton goes in for surgery and after that, they won't be allowed to be together until Katie is a month post-transplant.

However, the time between Dalton being listed and him getting a transplant, Katie could be listed and their transplants could be close together and they won't have to worry about not seeing each other. Who knows, only God.

So, this process is very emotionally and physically draining to the both of us. We won't be answering calls or texts tonight, but we will get them and we appreciate all of you. Thank you for standing with us at this time and although this isn't what we wanted, this is what God has planned for us. Please just don't stop praying. We will both eventually be breathing easy... <3 -Katie and Dalton

Family Portrait- 4/12/13

After this picture was taken it looks like Bo and Marley are both looking up. Maybe God is using them as a sign so that we won't stop looking up to Our God. He knows the way.

My Best Bud Is Growing Up!

As I'm sure you all know, Katie and I have two pups. Marley, she's our oldest, and Bo is a year younger. Well, Bo and I have been practicing in secret on him shaking my hand. Tonight, we tried it in front of Mommy and Marley, and he did it! I'm so proud of him. He's such a fast learner. I just had to brag on my boy for a minute. -Dalton

Anticipation

Well, we didn't get the call we were waiting for today. As most of you know, we are waiting on the call to see if we are candidates for double lung transplants. We have so many things going through our minds. Whatever the end result is, either both, one, or neither of us getting put on this list, I just want to know. I am very confused at this moment in time. I hate sitting at home not knowing what the next few months are going to bring us. But, I know, God has a plan for us, and he has from the beginning. -Katie

To: My Dad

Miss me, miss me??
:)
Love you Daddy!

No Donation Day!!

Today is our first No Donation Day! NoDoDay (sounds like 'no' 'doe' like the deer!!! and 'day') are randomly picked days where we want NO donations to any account. On NoDoDay we want messages, texts, calls, Facebook comments, blog comments, tagged pictures of us, prayers, and thoughts! We want NoDoDays to just be about positive thoughts and love because although this process is extremely costly, the only thing that is going to get us through this is You- Our friends, family, adopted grandmas (love you Jenny!!), pre and post transplant friends, cysters, fibros, sisters, brothers, church families, teachers, neighbors, and especially each one of you that we haven't met and probably never will meet. I hope each of you will participate in NoDoDays!

Transplant Team

The transplant team at UPMC is meeting today about mine and Dalton's cases. Please please pray that we get accepted. I had a bad dream last night and I hope it was just a dream. Please just start praying and don't stop. Instead of making a donation today, spend the time you'd be putting in your credit card information and just talk to God. Thank you to each person who is here for us. -Katie

Farewell

Daltons dad and grandma Prager went home yesterday around 4:00. We hated to see them go but know they have to get back! We will be traveling to St. Louis soon just to visit some people and get a few things taken care of. I know we would both love to see anyone that would want to see us! We don't know what our future is going to hold so this is kind of like a goodbye tour (just in case).

We got more oxygen delivered to the house yesterday! I thought we were going to be stuck here the whole weekend but thankfully we won't be! Marley and Bo are doing good and they were glad to see us. We have updated this blog page with different donation routes and jewelry information. Please don't feel like you have to donate to us, because you don't. As long as you pray, that is certainly all we ask.

We won't find out anything from testing until next week sometime. We both haven't really felt good since we have been home so I hope that goes away soon. Please just keep praying for good news and strength to go through this whole process. Love -Katie

Bracelets for Breath

I have started selling bracelets on Etsy. They are a little more expensive on there just because I have to cover the costs to list and ship. I have found out that shipping is not cheap! If you want to check out my shop, I will be adding more soon. Love! -Katie

www.etsy.com/shop/braceletsforbreath

Evaluation Complete!

There are so many new things that we learned this week about transplant and ourselves. We had many tests done and we attended many meetings with different people on the team. We are in the car on our way home now. I will post a more elaborate entry when we get home. I definitely felt Gods presence all week. -Katie

The City Of Bridges

This is the first new city I've seen since Cincinnati, and I love it! I always thought of Pittsburgh as a boring city with nothing to offer, but I was mistaken. The people here are friendly, there is a lot of history, the sun is always shining and the streets are bright and clean. If we end up getting transplants, we'll have to remain in Pittsburgh for at least two months post op, and I don't think I'll mind one bit. -Dalton

Day 1- Check!

Day 1 was a success! We started the day off with a social services meeting for Dalton (mine isn't until Wednesday) and that lasted about an hour. Then from there we went to lunch and then basically straight to Lung Transplant Orientation! There was so much information to take in but I feel very confident about this process thus far. Today we will begin testing and meet with more people of our lung transplant team. It is so amazing to type out 'our lung transplant team'. This is happening and very fast at that! Yesterday was very tiring and I'm sure today will be even worse. I will update tonight after appointments and will keep everyone updated. Please keep praying that our evaluations are successful and we will be put on the list. We aren't out of the woods yet, in fact, we just walked in and the light is very far away, but we can see a glimpse of it. I feel all of the love and prayers everyday. It is so amazing to know that so many people genuinely care. You'll never know how much each one of you is appreciated. -Katie

We're Here

We made it here last night at about 10:00. We are so happy and ready. Will post an update tonight after appointments end at 3:00. We have lung transplant orientation.

Another thing, I got baptized yesterday as a Christian. I am still on cloud 9.

Love. -Katie