Life on the Transplant List

So to update: 

Dalton- he is now on the transplant list. He is about 2/3 of the way down so we will have a little bit of a wait until he gets lungs. They are planning to reevaluate him to see if he can be moved up. 

Katie- I am still not on the transplant list. Dr. Pilewski said when they meet Tuesday evening he is going to bring me up. So who knows what will happen from that. I will find out Wednesday what they're gonna do.

Please pray. 

Can't Sleep

I'm so homesick. I really miss my family, my puppies, and spending time with my family on Sundays. :( -Katie

Hospital Visit #1

Yesterday we were seen in clinic. In result of that clinic appointment, we are both now in the hospital. Nothings going on here. I have been trying to sleep and just relax from the move. Daltons PFTs were up a little so thats good. He thinks it is from his c-pap, I do too. We are on the same meds as always and just crossing our fingers that we improve!
Thanks for all your prayers.. -Katie

Address

Many people have been asking for our address here in Pittsburgh. Our address is:

University Family House

Dalton and/or Katlin Prager

116 Thackeray Avenue

Pittsburgh, PA 15213

City Life

Well we had planned to move to Pittsburgh on Monday morning but didn't arrive until Tuesday around 6:00 PM. We left on Tuesday around noon and made it with no problems. We have been doing absolutely nothing today. 

I was telling Dalton, now is the time for the real blogging to begin. Up until now our blog has been filled with random thoughts and updates when nothing had really changed. But now is the time to update! 

We are living through many emotions right now, but I think that's expected. Just gonna keep holding onto our faith and stay strong for each other and I know we will get through it.

We talked to the transplant coordinator Tuesday night and he was off today so we will be talking to him to get things started in the morning.

I can't wait for you to take this crazy ride with us. Hold on tight!!! -Katie

Update

Just to update everyone. We had plans to leave around noon today but we had problems with our oxygen company. The issue is resolved now and we will be leaving first thing in the morning. -Katie

We're MOVING TO PITTSBURGH!!!

After my fight with insurance for so long and after my happy denial I am so so so beyond happy to say that we got the call today that DALTON WILL BE PUT ACTIVE ON THE LIST!! So, as soon as we move up there we just give them a call and he is on there! We are leaving Flemingsburg on Monday just so we can have the weekend to get our affairs together. Then the REAL waiting process begins!! I am so beyond happy! Praise the LORD, this is the real time that we need your prayers... They hopefully I will be on there soon!! PEACE and LOVE -Katie

DENIED!

Well, the thing I have been working on since April is DONE. OVER. Cigna, Daltons primary insurance, finally DENIED lung transplant services which is a BLESSING!! I am so happy to be done with them! I have been fighting for 2 very long months and it is finally over. Daltons mom took him off of her plan and thankfully I never have to deal with that insurance company ever ever again! This makes the process move a lot faster and we are now working with Medicare to approve the lung transplant process.
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

Clearing Any Confusion

I'm just gonna explain real quick as to why neither Dalton or I are on the transplant list. 

Our first step was getting evaluated which was done and we're both good candidates but neither of us are listed. Insurance is so screwed up right now, we have literally been fighting with them since April to accept Dalton for transplant. We haven't even started on my insurance yet because I just want to focus on one at a time. Things are very confusing with insurance and until that gets straightened out, nothing else can be done. 

Just been hearing things about one, neither, or both of us being listed and you can't always believe what you hear. This is the truth. Neither of us are on the list...yet. -Katie

Tired..

Well we are STILL waiting on insurance and its really starting to get to me now. I am so sick of fighting with everyone to approve this. No one gives me updates on anything, no one returns my calls, I have had it. Something will be done on Monday if its the last thing I do. I am just tired of people dragging their feet. 

Anyway, an update on us. Dalton had his second sleep study done a week ago and we should know the results of that on Monday and then they'll be able to get his bipap delivered! They said he would have more energy and it would make him feel lots better, so we are both excited for that. I have been running fevers off and on for the past two weeks now. We both had two really good days, last Monday and Tuesday, but since then, I have felt horrible. I have slept nonstop the past couple of days and decided to give in and call clinic today. It was my hopes to start home IVs but they want to see me first. So Dalton and I have an appointment on Thursday in Cincinnati. The plan that we have is to start IVs Thursday with no hospital. Although the hospital would be beneficial for the both of us, I just refuse to spend my last little bit at home in the hospital. If it comes down to it, I will come home feeling yucky with no IVs before I give in to an admission.

Dalton's dad, his dads girlfriend, and his brother came into town to visit us today! Most of the family from Missouri has visited us now and we love it! We are so happy that they came in just to spend a couple days with us. It means so much!! 

As most of you know I have started my own little business. It's mainly just a small business to keep my mind occupied since I can't work and to make a little extra money for living expenses when it comes to transplant. Well I have some very EXCITING news that I can't wait to share!! Sorry that was such a tease but I promise the next blog I do will be all about it! 

Peace. Sweet Dreams. And Always Tons of Love. -Katie

Just an Update

Video Update from Yours Truly!! -Dalton and Katie