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Saturday, March 30, 2013

Tomorrow

Tomorrow is the big day. We are leaving Flemingsburg to head to Pittsburgh. Please pray for us! We just ordered more bracelets tonight, so when we get home Saturday, I will be sending them out! Love!! -Katie

Friday, March 29, 2013

Busy

Dalton's dad and grandma Prager are on their way to our house from St. Louis today! We are both excited to see them but I still have a few things to do before they get here in 2 hours. I made a quick trip to Lexington this morning to get more supplies to make jewelry and now I have a lot of beads and charms! Please if anyone wants a bracelet I will make you one! They are $12 and I have plenty of colors and charms to pick from. Click on the 'Kraft' tab to see all of the different colors and beads! If you want a charm just let me know, I got many different kinds. Also, if you've ordered any of the rubber bracelets lately, I just was able to send them out this morning. I was having problems with the post office and the packaging that I could/ couldn't send them in. But, all are on their way now! Got a lot of things to do before Dalton's family gets here. Thanks for all of your love, support, and everything else! I can't thank everyone enough. Remember if you would like a rubber purple bracelet, just donate $3 or more to our gofundme page and then email me your address at pragercf@gmail.com. http://www.gofundme.com/dkprager LOVE -Katie

Thursday, March 28, 2013

Evaluation and Just an Update

So, on Monday I called UPMC (Pittsburgh) to get started with the transplant process for the two of us. She gave us several dates to choose from for our evaluation appointments. She said that evaluation was going to be outpatient but we would have tests and other things to do Monday-Friday so we would have to leave Flemingsburg on Sunday and stay up there all week. She gave us about 5 different weeks to choose from and we were to call her back with a couple of dates that would work best for us. Well, one of the dates she gave us was April 1st, NEXT WEEK, and that is the one we decided on. Fast-forward to today, Thursday, and I just got the confirmation call from the appointment scheduler, Katlin, that we are all set up for next week! Dalton and I are getting evaluated next week!! This time last month we were coming back from St. Thomas struggling to breathe and now we are getting a second chance!! I'm not quite sure what we will be doing (we will get our itinerary in the mail tomorrow) but I am beyond excited!!
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

Corinthians 1:13

Love Conquers All. Corinthians 1:13. That's exactly how I'm looking at this whole experience from here on out. Will be ordering shirts soon and I will let you know those details! We also have bracelets for sale. The rubber 'live strong' bracelets. Just donate a min $3 to our transplant fund at http://www.gofundme.com/286sbo and message me your address on Facebook or email at pragercf@gmail.com and I will mail you a bracelet! If you're already donated just let me know so I can also get you a bracelet! -Katie

Going Forward

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

Home Sweet Home

Dalton and I are finally home!!! Thank you for all of your love and support! -Katie

Friday, March 22, 2013

Just An Interesting Thought

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

Thursday, March 21, 2013

Home?

Well word on the floor is that we are supposed to be going home today. I still haven't done PFTs. On top of that, neither of us are feeling top notch but we've gotten all that we can out of this admission. I just had my port reaccessed for some reason. I will probably be taking it out later today anyway. But oh well, it was something for her to do and it didn't hurt me. I actually like having my port deaccessed, cleaned, and reaccessed. Well I will update more when I know more. I haven't packed one thing so we probably won't get out of here til late if today at all. Will keep you posted. -Katie

Tuesday, March 19, 2013

Back to Floor

Dalton is back on the regular floor now. He is two doors down from me so all is good here. Just still fighting! -Katie

Bronch

Dalton ended up not having to get a bronch. Will update again later. -Katie

Monday, March 18, 2013

ICU

Dalton went to the ICU early this morning. He was supposed to have a bronch done but now he doesn't have to! We are happy about that! They did a ct scan and we should find out the results soon. He will be coming back up here to his room tomorrow morning. Please keep praying, I feel it working!

Monday Morning

Well, Dalton had a little bought of coughing up blood this morning and so they are doing a bronchoscopy. A bronch is just a procedure that involves taking a camera and looking at the lungs. He is in the ICU for two reasons. One, so they could keep a closer eye on him and two, because there were no step- down rooms available. He should be back up here to his regular room later today or tomorrow. It would be nice if we could get some extra prayers right now. -Katie

Sunday, March 17, 2013

My Three Week Mark

The fresh fruit that the cafeteria has here at the hospital is surprisingly delicious. I've been eating a lot of cantaloupe,  honeydew, pineapple, and grapes the last few days. All of a sudden I started craving fresh fruit all the time. Also, my stomach issue is getting resolved, so I can get back to stuffing my face. My three week mark is coming up, which means discharge papers! I do believe I have gotten all the good I can from three weeks here. Now I need to concentrate on Katie.
-Dalton

Saturday, March 16, 2013

Exhausted..

Updates...
Dalton has been having stomach issues. He has ate so much that it's pushing up against his lungs so he can't breathe as well. I think he's NPO (nothing by mouth) until further notice. His o2 sats remain at 90-91 on 2 liters oxygen.
I have been having some oxygen problems. I am currently on 6 liters of oxygen and my o2 sats are 90-91. When I take my oxygen off they dip down to low 60's.
Seems like you can be fine one day and the next knocking on deaths door. -Katie

Friday, March 15, 2013

Sad

I'm just feeling sad tonight... -Katie

Thursday, March 14, 2013

Wednesday, March 13, 2013

Oxygen

I am glad Dalton is staying and demanding new antibiotics, I am going to do the same since I don't feel what I am getting is doing anything either. Maybe we can go back to our normal IV cocktail. Speaking of cocktail, I miss St. Thomas.
Anyway, what my post was originally about was our Oxygen saturations. First of all, oxygen saturation is a measure of how much oxygen the blood is carrying as a percentage of the maximum it could carry.Your oxygen saturation (o2 sats) usually range from about 98-100%. Even with CF mine and Daltons have always been 96-100%. In the last few weeks we both have dropped and hovered to around 90% and just these past couple of weeks we have dropped even more. Without oxygen, my o2 sats are around 83% and Dalton is in the same boat. This is a very over whelming feeling for me. I am now on oxygen almost all of the time. I do breathing treatments four times a day and it doesn't make it any better.
We need all the prayers we can get please. That is all I ask of you. -Katie

Fresh Air Postponed...

Unfortunately,  I cant go home for a few days as of this morning. The current antibiotics I'm on just aren't cutting it.
I need to get better! Transplant evaluations are coming up, and Katie and I are getting on that list! -Dalton

Monday, March 11, 2013

Time For Some Fresh Air!

My discharge day is almost at hand, and I'm glad. I've been here long enough. I need some fresh air! Unfortunately, Katie is not ready to go yet. Her infection is still running rampant and her anxiety is stirring. After a little time here, however, I think she'll be feeling better.
I cannot wait to see Bo and Marley, but I especially cannot wait to cook again! I miss cooking and eating gourmet food with Katie SO MUCH. When she gets out, it's going to be Hells Kitchen at the Prager household! -Dalton

The Weekend..

Is today Monday or Tuesday? My days are all running togeher. This hasn't been the best admission for either of us. Dalton is progressing though and will probably be getting out tomorrow or Wednesday (that will be two weeks for him). I however won't be getting out until atleast Friday, maybe longer than that.
Over the weekend I had several anxiety attacks. So I was treated with oral Ativan. I got worse and so I was then treated with IV Ativan. It was a horrible experience. I started throwing up a lot of blood and my blood pressure was really low, I had low O2 Sats, and my heart rate was high. I was taken to the step-down unit of the ICU. I honestly can't remember anything from this past weekend or today. And I honestly really don't want to.
Please pray that Dalton gets home soon. I know he misses home. <3-Katie

Friday, March 8, 2013

Another Day..

Well after a week of fighting back in forth with my inner self, my doctor thought it was best that I'd be admitted today. Originally I was going to be bringing Dalton home but now he is still in until at least Monday and now I'm in until who knows when. I will update when I know more.
Oh also, big news... I talked to Pittsburgh today. We are still trying to get insurance information straightened out but it's something.. Please keep praying. -Katie

Thoughts

The times that I hate the most are late at night/early morning when insomnia has rattled my brain or early in the morning around 6:00 when I have awoken because I could no longer attempt sleep from my restless night.
I hate these times because Dalton is usually sound asleep. I glance over at his chest to make sure it is still moving up and down. I listen to his shallow breaths and pray that Pittsburgh calls us with an evaluation appointment soon. I hate laying there by myself,
thinking
hoping
praying
wishing
for something that might never happen.
-Katie

Thursday, March 7, 2013

Hospital

I am up here with Dalton. He should be getting out of the hospital tomorrow. I have started making jewelry to raise money for our transplants. We will have to relocate to Pittsburgh so we will be staying in a hotel for no telling how long before and then we will have to stay there 3 months after transplant. Neither Dalton or I work anymore. Trust me, it gets very boring and we would if we could. So instead of bringing in money from a job, we will hopefully be able to bring in a little money this way. If anyone has any ideas to raise money, we would love to hear of things you have done in the past! Feel free to comment! We love reading them! - Katie

Wednesday, March 6, 2013

This Journey

I was just sitting here listening to the machine that has been allowing me to breathe over the past 3 days make its continuing hmming noise. I started to think about all of the things that Dalton and I will be able to do after we get our lung transplants. I want to-
run for miles.
play in the rain.
kiss longer.
I know Dalton is ready for this journey and I am too. I am more than ready. We have been married on paper for almost two years now. But, soon enough we will be able to act like it. We don't go out a lot, we don't do a lot of fun dates. We are mainly homebodies because we just get too tired. Soon enough, we will be able to do-
whatever we want.
whenever we want.
Give us time. We will get there. -Katie

Tuesday, March 5, 2013

On The Sixth Day...

This is day number six in the hospital for me. My coughing has gotten better, along with my O2. Thankfully, the doctor said that if I feel up to it, they will discharge me in a couple of days. Pulmonary and I have been banging heads over me going home. If they had their way, I would remain hospitalized until Katie and I went to Pittsburgh. I politely declined on the basis that their idea of hospitalizing me long term is completely and utterly nuts. The hospital is my vacation condo, not my home!
When the doctors made their rounds, they came in and told me that my latest sputum sample grew Atypical Mycobacterium along with the usual infections. They will have to test my sputum two more times. They said if it grows all three times, then the infection is positive. If it only grows once or twice, it is not something that should cause concern. Needless to say, I'm crossing everything I got to keep this bacteria out of my system. With the transplant evaluation coming up, the last thing I need is a new breed of infection.
The social worker gave me the phone number for the Pittsburgh Transplant Center today. Luckily, it is up to Katie and I to initiate communication with them, so we can put the pedal to the medal and work it on our own schedule. That would be very convenient, because Katie and I are wanting to do a little bit of sightseeing in Pittsburgh. There's no reason we can't have fun while being fitted for two shiny new sets of lungs. Katie and I can not wait! You just gotta LOVE that new organ smell!
-Dalton

Coming Up On One Week

Well, Dalton was admitted to the hospital last Wednesday and he is still there. He has improved some but still has a way to go. The doctor originally wanted to keep him until we went to Pittsburgh to be evaluated for our transplant but Dalton did not agree with that at all. So, Dalton will do PFTs and they have hopefully improved at least a percent or two in order to be able to come home.
I haven't been up to visit Dalton since Saturday night. I haven't been feeling well and have been on 2 liters of oxygen with my O2 sats still lower than normal. I emailed our doctor and she started me on 3 different oral antibiotics so hopefully things will start to get better soon and I will be able to make it back up to see Dalton later today or tomorrow. I hate not being able to be up there with him, but I know from past experience when he isn't able to be there, I am okay with it so I believe he is okay.
Please pray that Dalton gets to come home soon. I will update when I find out more information.-Katie

Sunday, March 3, 2013

The Quest

Dalton and I are starting our journey to find new pretty, pink breathers! The only center that will transplant us is in Pittsburg, Pennsylvania. We have done a lot of testing and our insurance information has been submitted to Pittsburgh. The next step is to have an actual appointment there which will hopefully be happening within the next two weeks to a month.
As Dalton said in the previous post, we didn't think it would happen this soon and we definitely didn't think it would happen at the same time. But I feel that we are blessed that we are going through this together. We will know what each other is feeling and I think it will be good for coping and dealing with this.
I just really want to welcome you on this journey with us and thank you for all your love and support! I can't wait to share our story.. -Katie

It's Finally Time

My whole life, I've always seen the time for a transplant to be "in the future". I believe, however, that I have finally come to that mile marker. I have a lot of faith in Katie and I. Something in me just knows that this will all work out. Our transplants will not be the end of the road, but the start of a new one. It's time to get in that far right lane and start merging onto that big highway! -Dalton