Friday, December 27, 2013
Sunday, December 22, 2013
Friday, December 20, 2013
Tuesday, December 17, 2013
Doctors have me on the same medicines as usual. Meropenem, and Vancomycin (which I get an allergic reaction to). Since I get an allergic reaction, they pretreat it with Benadryl and that works. Nothing new is going on. I hope to go home by Thursday. -Katie
Monday, December 16, 2013
Saturday, December 14, 2013
Friday, December 13, 2013
When a patient gets new lungs (or any organ for that matter), there is a possible chance that rejection of the new organ can occur. Your body recognizes that the organ shouldn't be there and basically attacks it. Unfortunately, lungs are probably the most difficult to transplant. My fear of rejection was so intense that I had an internal fight with myself everyday. I basically kept my fear hidden because no one wants anyone to know their deepest fear.
I can honestly say I am not afraid of anything else.. I am not afraid of dying, in fact, I have prepared myself to die. When you are in this kind of situation, it is best to prepare to die. You have to make sure you have all of your important paperwork; a will, power of attorney, financial power of attorney, etc. I'm 23 I shouldn't even know what a power of attorney is, but I do. If I was to go into coma right now, there is a binder that Dalton or my parents could go to and find every piece of information that they need. From what to do from a health standpoint, to what company my house payment needs to go to. It's all there.
Another reason that I was putting this transplant off for as long as possible was because of the new drug combination that Vertex Pharmaceuticals is coming out with, possibly within the next year. How would you feel if you had fought a disease all of your life, spent a lot of time in the hospital, had multiple surgeries, fought for every breath and all of a sudden a pill could fix your problems? This pill is supposed to treat the underlying defects where all of the problems start and it is showing good results. I have been sticking it out, waiting for as long as possible to hopefully get my chance with this drug but my time is closing in on me and I don't think it is possible to wait that long anymore.
On Wednesday at our clinic appointment, with a PFT of 17% on 4 liters of oxygen and still feeling very short of breath I relayed my concerns of rejection with Dr. Pilewski. Although I had told him this concern before (so he already knew what was coming) he listened and cared. He never tried to pressure me. I told him I still wasn't ready and that I was still scared of rejection. This is really something you have to figure out on your own. No one can make this decision for you. You have to want it for yourself and be totally committed to taking on the responsibility of a whole new life. After clinic on Wednesday I was admitted into the hospital.
I have been doing a lot of thinking and reflecting on the past few months, especially on Wednesday night. I am seeing my old friends have the time of their lives. I have lost so many friends due to my Cystic Fibrosis, I hardly have any left. I don't have any close friends except Dalton and well, he is stuck with me! There is nobody I feel like I can just text to be texting. Where did everyone in my life go? Why do I feel so abandoned? I am not healthy enough to go out to bars in the smoke, I can't go dancing and wheel an oxygen tank around, I get so tired so easily and walk so slow because it literally takes everything out of me to walk. I guess they are afraid I will hold them back. But, at least now I know who really is a true friend and who isn't. No matter how much I try to still be friends, nobody really tries with me. I am tired of living this way.. I am wasting days, months, of my precious life. This should be the prime time of my life to be doing what I want to do and it's not. I'm mostly homebound, something had to change.
With my mom sitting right next to me in the hospital, Dr. Pilewski came in and I said, "I'm ready, I want to be listed." He asked what had changed my mind overnight. Well, I will tell you what.. I am so sick that the new drug isn't probably going to help me much to matter at all, I could still be on oxygen even with the drug and I could still stay sick. I could possibly need a transplant in the near future anyway.
Sitting in my house waiting to die or a pill is not being proactive.. I have a life to live and I am beyond ready to start living! I have so many things I want to do after transplant and I can't wait another second!! I am ready to have my second chance at life.
Thursday, December 12, 2013
Dalton- started oral antibiotics, pfts staying steady, weighed an awesome 109 pounds (seriously, so proud!!!), Dr. Pilewski thought he looked great!, not feeling 100% but still doing alright.
Katie- weight 92 (lost weight), pfts down (now in the teens consecutively), got admitted for IV antibiotics and steroids, still gonna kick this!
We also have updates for the transplant list..
Dalton- trying to get the flight coordinated so that we are still able to live in KY while waiting for transplants, so not active on the list as of right now.
Katie- ACTIVE on the transplant list as of 12/12/13!
Not much has been going on lately with either of us. We stay at home mostly and just hang out with the dogs and each other. We are both SO ready to get out and live!!
Will update more later.. <3
Thursday, November 28, 2013
Monday, November 25, 2013
Monday, November 11, 2013
Friday, November 8, 2013
Monday, November 4, 2013
Wednesday, October 30, 2013
Saturday, October 26, 2013
Friday, October 25, 2013
Thursday, October 24, 2013
Since my birth and through high school, my health was fairly decent. I went into the hospital max 3-4 times a year. I never let CF stand in my way of anything I wanted to do. Since I was little I have played sports, went out, hung out with friends, and believe me, done the crazy things every parent doesn't want to think their teenager is doing! In the past few years, things have been difficult. I can't keep count of how many times I just wanted to get up and run, like I did when I was in high school. My life has been spiraling downward and for the first time in literally forever, I feel like I barely have a grip on what is going on with my body and honestly it is not a good feeling. This year has been the worst of them all..
It all started when we began the journey of going through doctors and finally landing in the best hospital with the best care at University of Pittsburgh (UPMC). I cannot say anything but the best about the team that takes care of us. Our dr. in Cincinnati referred us both for lung transplants to UPMC. I can safely say that those 3 days of transplant evaluation were the toughest and longest of my life. I started having to wear oxygen in March and thus came the vulnerability that I wasn't used to. I have officially been in the hospital or on IVs more times this year than I have not. This year my body has been breaking and transforming into something so that I can continue to survive. With each admission, I break a little more and my body becomes a little more ready for transplant.
If you think about it, for someone who has been living so poorly that they would just want to go, go, go, get the transplant and start their life.. But me, my body is saying one thing and my mind is definitely saying another. My body is yelling at me to 'help, please I can't take this one more day' but my mind is saying 'you're still kicking ass, you don't need a transplant right now'. I tend to lean towards my minds thoughts more than my bodies feelings and I have always been this way.
In the past 3 weeks I think I have began preparing myself mentally and emotionally and my physical health is ready. In my mind I am still being cautious and making sure it is the right time. I am currently not on the transplant list right now because I have to do a couple more things for insurance. Although I am sick, and in the worst possible health I have ever been, I am slightly putting those things off to make sure I am ready. I keep fighting with myself and no matter what anyone says to me, whether it be opinions on what I should do, or what I shouldn't do, I don't take what they have to say into consideration.
Over the last few days, I have realized what it means to be sick. All the other times in my life, I have taken a couple of weeks of IVs and then jumped right back. I didn't jump back this time. In fact, I am still sitting on the floor because my knees keep giving out. The IVs I feel haven't worked very good.
Over the last few days, I have also realized how important a positive attitude is and how important laughter is, how important friendships are, and how quickly your body can take a turn for the worse. The only thing I want to do is keep laughing a lot, keep my positive attitude that I have had all of my life and trust me, if I haven't lost it by now, I never will, and see my friends that feel like family who I used to have but no longer come around.
When I finally realize what needs to be done, I'll do it. For now, I am just going to continue with the punches.
(I might update more later on but for now this is it)
Wednesday, October 23, 2013
1. We both have to wear our bipaps at home because of our high CO2 levels.
2. Instead of having to carry around big tanks, we are going to get to go home with liquid oxygen which will be way easier to carry and can even be carried in a little backpack.
3. Katie gets her feeding tube switched out for a mickey button which is way smaller and much easier to take care of.
All in all, it has been a crazy past two weeks and we really hope we get to come home soon. We also have a unspoken prayer request so please pray that the Lord guides us to make the best decisions.
-Dalton and Katie
Friday, October 4, 2013
Monday, September 30, 2013
Thursday, September 26, 2013
Monday, September 23, 2013
Monday, September 16, 2013
Sunday, August 25, 2013
Friday, August 23, 2013
Monday, August 19, 2013
Save your worries, because believe you me, your life can go from boring or inconvenient to the scariest horror show you've never yet seen. I know, it's difficult to learn life lessons through word of mouth. I always have to learn the hard way. I guess it's from being so hard headed all the time. Hopefully there are some wise people out there who can glean a little something from this. -Dalton
Saturday, August 17, 2013
Friday, August 9, 2013
1. Dalton got out of the hospital last Saturday, August 3rd. He is doing good. His stomach is healing up just fine and we are just working on staying healthy out of the hospital. We have actually been feeling pretty decent here lately and have gotten to enjoy each other and family.. Which leads to my next update...
2. We got to come home last Monday. We are in Kentucky for a couple of weeks. Dalton is not currently on the transplant list so we don't have to worry about him getting the call. I am on the transplant list and if I get the call before we are back in Pittsburgh there is the option to drive back for now. We are really enjoying spending time with family, our little puppies, we are going to get to go to church on Sunday and we are just really happy and comfortable here, so that is why they let us come home for a bit.
3. We have appointments coming up here in the next couple of weeks which is when Dalton will hopefully be put back on the transplant waiting list. He is not currently on there right now because of his stomach but hopefully by then all will be healed.
I know I say this a lot but I just wanted to say thank you to everyone who prays, calls, texts, and supports us.. We honestly couldn't do this without you! <3 I will try to update at least two times a week until one of us gets 'the call'.. -Katie
Thursday, August 1, 2013
Today a home dietician came by the place we were staying for me to check on how the feeding was going. I think they are going to be changing my formula around.
Just also wanted to give a special thank you to Daltons grandma Prager for staying with us for the past week. She has been very helpful during these past few days. It really is great to have such a good support system.
Keep the prayers coming!
Wednesday, July 31, 2013
Tuesday, July 30, 2013
Saturday, July 27, 2013
Friday, July 26, 2013
As you all know, Dalton had surgery on his stomach a few days ago. Just as we were about to leave, they removed his staples. Well all of a sudden he looked down and his intestines were hanging out of his belly. So we are still here and won't be leaving tonight. I'm discharged but I will be staying here with him. This is a little set back. Will be sewn up soon. I will keep you posted. -Katie
Monday, July 22, 2013
Saturday, July 20, 2013
Friday, July 19, 2013
I've been out of the ICU a couple days now, and in hindsight, is so obvious where those voices came from. Each and everyone of you. Everyone who has prayed for me. You have all done a momentous deed for me with the Hand of God when I needed it the most. Thank you.
Now, as my sweet wife did for me, I am asking for your love and prayers. She just gave me the "See You Later" kiss. So please everyone, pray for Katie. Pray for complete success. Pray that she keeps a soft smile as she sleeps and awakens well rested! -Dalton
Dalton is doing good. His bowels are back to working normally. He is still having some issues with pain though (which is expected since his belly was cut in half)! He also ran some fevers yesterday so I am not sure what is going on there but I think things might be moving forward.
Here in just a little bit I will be going down to get a feeding tube (click on feeding tube to see what it is). I am having surgery here in just a few so I won't be in commission tonight to be able to work on my bracelets. I have sold so many here in the hospital and I only hope we get out of here soon. The doctor and nurse practitioner said that we may be transferred to a longer term care facility until we feel good enough to go to family house. Dalton will update on how the surgery goes.. Love to all and thanks for following. -Katie
By the way.. Our 2 year anniversary was on July 16 <3 I fall more in love with this man every day of my life..
Sunday, July 14, 2013
Saturday, July 13, 2013
Sunday, July 7, 2013
Saturday, July 6, 2013
Thursday, July 4, 2013
Wednesday, July 3, 2013
Tuesday, July 2, 2013
Monday, June 24, 2013
Sunday, June 23, 2013
Saturday, June 22, 2013
Thanks for all your prayers.. -Katie
Thursday, June 20, 2013
Wednesday, June 19, 2013
Monday, June 17, 2013
Friday, June 14, 2013
Wednesday, June 12, 2013
More awesome news, Dalton is off all of his pain medicine and he is doing so much better. Things were getting really rough there for a while to the point of I was unsure if I was going to be with him much longer. Everyone started noticing how fast he was decreasing and I was getting worried. But now, he has been off his pain medicine for 4 weeks on Sunday and he is so much better now than he has been in atleast 6 months. He is gaining weight and he just looks good and he even acts and feels good. I am just really happy with that.
We have a clinic appointment tomorrow, and I am anticipating IVs but I do NOT want to go into the hospital. My fevers are still coming and going but I want to stay out and enjoy Fathers Day weekend with my dad this weekend.
Love to all of you and thank you to all of our faithful readers! -Katie
Saturday, June 8, 2013
Friday, June 7, 2013
Wednesday, June 5, 2013
Tuesday, May 28, 2013
I love the feeling of enlightenment, a sudden instance in which you fully understand the world around you and your role in it. You see the wicked clearly for who they are as clearly as you see the righteous standing behind you!
Ah...yeah, I dont think so. If anyone felt emboldened by that second sentence, you need enlightenment. -Dalton
Sunday, May 26, 2013
Wednesday, May 22, 2013
Tuesday, May 21, 2013
If you want to order a Dalton & Katie t-shirt or purple rubber 'Love Conquers All' bracelet the on the right side of the page there is a place you can choose what you want to order. When the paypal window pops up make sure you click on 'Continue Shopping' if you want to get more than one thing.. <3
Sunday, May 19, 2013
Saturday, May 18, 2013
Thursday, May 16, 2013
One because I am just so blessed to have met such a wonderful man that I call my husband. I wouldn't be the same person if I hadn't have met Dalton.
Two, I am so blessed to have such amazing people in my life. I never would have dreamed so many people would have crawled out of the woodwork to support and shower Dalton and I with all of their love. From all of our family, to people at church, to people who have been buying my bracelets, to people who just volunteer for whatever is going on, it is honestly amazing.
Three, I just want insurance to work out, I want to move forward and I want to get this done with. Dalton and I have to live separate and we can't be together while one of us is transplanted and the other isn't so we aren't sure how long that will be. We could be apart for a year, it could be a few weeks. We really don't know. Maybe that's what I don't like, not knowing.
Tuesday, May 14, 2013
No matter where we are, I almost always have my phone with me. I feel that it is how I stay connected with the world. I can easily access facebook, I can call anyone, if someone buys a bracelet I can take their credit card information and send it straight to my bank account, I can literally do anything with the touch of a few buttons. While sitting down about to eat Dalton picked up my phone and said this isn't reality. I was so confused. What was he talking about? But the more he talked, the more I realized he was right. Nothing exists outside of what we can touch and see and feel. Nothing. Sure it's out there, but it doesn't exist. It isn't here, I am not experiencing it, therefore why does it matter. Honestly, the only thing that should matter is what is happening in the here and now. Even God can't go back and change the past and nobody seriously knows what is going to happen in the future. The only thing that is for sure, the only thing we are 110% certain is happening is what is going on right in front of our faces. Why do we spend so much time on our phones looking at facebook? Why does it matter? The pictures and comments that we see on there are completely irrelevant to our lives and what is going on in the here and now, what is going on in real time where you are.
Monday, May 13, 2013
My advisor, Wendy Noble, has been my rock this past semester. She has been there for me, fought for me, helped me, talked me through problems, and walked with me every step of the way. I don't know how I got so lucky to have such an amazing advisor, but she is honestly one of a kind. Thank you Mrs. Noble!!!
I am going to leave you with this. Never give up. You can do whatever you set your mind to. I have been through everything to get this degree that would normally only take two years but here I am four years later and I am beyond happy. "I Can Do All Things Through Christ Who Strengthens Me" Philippians 4:13
Friday, May 10, 2013
Today was Katie's college graduation. Despite everything we're going through, Katie worked hard and persevered through the pain to earn her Associates Degree. I'm so proud of her! She's living proof that anything can be overcome with enough determination. I love you Katie Prager. You're my hero.
Wednesday, May 8, 2013
Tuesday, May 7, 2013
Sunday, May 5, 2013
We will keep everyone posted as something happens. -Katie
Thursday, May 2, 2013
Dalton and I have a BBQ this weekend at my Aunt Nancy and Uncle Jeffs house. It will be mostly family and we invited some friends.
Dalton and I are still on IV antibiotics. We have a doctor appointment on May 7, so I guess we will see how we are doing then. We are both so ready to move to Pittsburgh.
Tuesday, April 30, 2013
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
Monday, April 22, 2013
*If you want an awesome Dalton and Katie Love Conquers All bracelet, message me your name and address at firstname.lastname@example.org 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!
Friday, April 19, 2013
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!!!
Thursday, April 18, 2013
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
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
Monday, April 15, 2013
Don't forget to tell my little brother Jake a Happy 20th Birthday today!!! Love you!! -Katie
Saturday, April 13, 2013
Friday, April 12, 2013
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.
Thursday, April 11, 2013
Wednesday, April 10, 2013
Tuesday, April 9, 2013
Saturday, April 6, 2013
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
Friday, April 5, 2013
Thursday, April 4, 2013
Tuesday, April 2, 2013
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
Monday, April 1, 2013
Saturday, March 30, 2013
Friday, March 29, 2013
Thursday, March 28, 2013
With transplant it is required that you bring a support system with you to the appointments. If only one of us was getting transplanted then obviously the support system would be the spouse but since BOTH of us are trying to get transplanted, it has to be someone else. So, tomorrow, Dalton's dad and grandma Prager are going to be coming in to visit and stay with us and go to the appointments, my mom is going with us, and Dalton's mom is flying to Pittsburgh on Sunday. I really wanted my dad to go but he had to work. He of course, will be taking the puppies though!
Another thing is that we have the order in for shirts! I can't wait until you see them! They rock! The are a combined effort from Dalton and I, so they are very special to me. I really hope they sell well. I will let you know when you can order one. I also finally have my jewelry that I have been making at It's A Girl Thing Boutique in Flemingsburg and my mom has been making necklaces. So, if you are local, feel free to go in there and browse. She has tons of other stuff too, it is just a really awesome store.
Dalton and I are still on IV antibiotics and will be until tomorrow, after that we are done. I am so thankful that we won't be on them next week during our hectic schedule!
Be sure to check in everyday next week because we will definitely have a lot to blog about! Thank you to everyone who has shown so much support and LOVE. -Katie
Tuesday, March 26, 2013
Katie and I were sent home from the hospital on constant oxygen, so we each have an oxygen machine here at the house along with thirty feet of tubing apiece. Needless to say, it's taking some getting use to. Luckily we're both quick learners! Also, Pittsburgh contacted us about some dates to choose from for evaluations for Katie and I both. Stepping forward everyday. -Dalton
Saturday, March 23, 2013
Friday, March 22, 2013
An interesting thought crossed my mind today. If you checkmark the Organ Donor box on your licence, watch how you treat yourself. If you want to donate your organs, that is a wonderful thing. But dont bother checking that box if you smoke, even if you only do it "socially". Or maybe cut back on drinking if you like to party a lot. It's scary enough knowing that someone out there is using the lungs I may eventually get. I would want nothing more than to assume they're in prime condition, but I'm no fool. Just remember, if you plan on being an organ donor, someone's life will depend on how you treat yourself. That person might be me. -Dalton