Nervous

I'm sick. I can't get around that fact anymore. The home health nurse came today and my vitals were no good. On 5 liters of oxygen at rest my o2 sats were 96% and my heart rate was 140. I had a fever and night sweats last night. 

I don't want to go back to Pittsburgh to the hospital. I'm gonna try everything in my power to stay at home. Here's to more IVs and treatments. I could really use an extra prayer. If you need me the best way to get ahold of me would be text. Not much into talking on the phone right now. Love and peace to you all. -Katie

Never Giving Up

Things are getting much harder for me. Even day by day. I do still have good days though, but they are few and far between. This hasn't been a good weekend. I struggled a lot with breathing and fevers. I am still on IVs at home and they are working out okay. The only bad part is waking up early to start them and staying up late to do the evening doses. 

Other than my health, life is good. Dalton and I have grown closer since we've gotten sicker. It's nice to have someone who literally understands everything. His love is so genuine and pure. I'm so blessed to have him. 

I am tired of sitting at the house with no job. I can't wait until I get my transplant so I can go back to work! I would go to work right now but that is just not possible right now. I haven't worked since June of 2012. Most people would be happy to not have a job but sitting a home is awful, especially when you don't feel like getting out to do anything. I would LOVE to have a job right now. Not even for the money, but for the socialization. 

Dalton and I are pretty much loners but we love spending time with people. We don't get out much these days because it's so hard but love visitors. If you would like to come visit us, text me! We would love to have anyone over! And I mean anyone (unless you plan on burglarizing our house)! I know a lot of people are on break right now so I'm serious, come visit us, even if it's just for a few minutes! We'd love to see some friends!

-Katie

Home

Well, I made it home Thursday night around 9:00. Mom drove up, picked me up, and drove me back home all in one day. I think she woke up at like 3:00. I couldn't have done that! Anyway. I am still on IVs through January 4th. I was so happy to get to come home but I am already just feeling miserable. I have a fever and a lot of wheezing. But unless I absolutely cannot breathe at all, I will not be visiting any hospital or doctors office until December 26th. I'm really hoping this is just a fluke and I'm just tired and my body is just trying to catch up but I don't think so. I am working so hard to try and stay healthy for Christmas. It really is my favorite time of the year. I'm gonna go try to get some sleep, I hope everyone has a great weekend! -Katie

A Week

I have been here since last Wednesday, almost a week. I am really ready to go home although I don't feel any better. This time of the year is my favorite and I really don't like being stuck in here. I have been dealing with pain in my lungs and shortness of breath. They have me up to 3-5 liters at rest now, and 6 while walking around. It is no fun being sick, but I get past the bad feelings because I think about all I am going to be able to do soon with my new lungs. Although I would really hate to be stuck in here during Christmas, I think it would be so awesome to get a lung transplant around Christmas.
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

I am Beautiful

So before I post anymore blogs I want to point out a couple of things. This is real life. Real life isn't always happiness and rainbows. Real life hurts sometimes and sometimes it even sucks. Nobody should be expected to be happy 24/7. I have my bad days and I have my good days. Sometimes I want to hug everyone and tell jokes all day long. Sometimes not only do I want to rip my hair out, but I probably want to rip yours out too. Sometimes I just want to sit at home and cry all day long. And you know what? I'm allowed. I am allowed to feel happy. I am allowed to feel defeated. I am allowed to cry, laugh, curse, and smile. Having a chronic illness teaches you more than just to be strong but it teaches you how to survive. You have to make your own path in life. You can't always take the easy way out. There are going to be people who can't handle or don't want to handle what you have to deal with. And I have had so many people like that in my life. I have learned with those people you have just got to thank God for him putting them there for a while because when they no longer are there for you when you're actually sick, the least you have is happy memories to look back on. So from now on, just know that this blog can get bad and it probably will. I am entering a point in my life where things are going downhill fast. I have needed 6 liters of oxygen to walk around when just a couple of weeks ago I could go on 3-4. I am exhausted the minute I wake up until the minute I lay back down (if I even get out of bed that day). You get to read my blog and think 'oh that poor girl'. Please don't think that. I am sick, yes, but I am alive. I may not be breathing well, but I am breathing. I may not be beautiful right now because my eyes are sunken in, I am all bones and no fat, I have dark circles under my eyes, but I am a child of God and I think that I am beautiful enough.
-Katie

Really Rough Night..

With CF you can go to having a great day one minute and the next your world could be crumbling before your eyes. I had one of those nights last night. It started out with coughing tons and not being able to breathe at all. My lungs were hurting so bad and nothing they were giving me was working. I ended up taking a few different drugs and doing some treatments. I am still not feeling good and haven't been asleep since yesterday at 8:00 am. I am exhausted but can't sleep because my lungs hurt. I just wanna lay down and be comfortable for a couple of hours. Hopefully in the next hour I can get my antibiotics and I get pre-treated with Benadryl for an allergic reaction so that I can fall asleep. I am also going to talk to my doctor about giving me something else for my pain. The several different meds they tried last night didn't help at all.. I just cuddled with my blankey all night.. I am praying today is a better day. I want to go home so bad. There is only 11 days until Christmas and it is my favorite holiday (along with a few days following up to it). I wanna come home!!!
-Katie

What A Feeling!!

So, at the beginning of the week I said if I could just get through this week I would feel a lot better and I was so right.. I am ecstatic that I am on the transplant list. I'm not gonna lie, for the longest time I did not want to be on the transplant list. Dalton and I would talk about it often and it would usually end up in a bickering match. I wasn't ready and he was. I could not make up my mind whether I even wanted to go through with it. I wasn't scared of the surgery, not at all. I wasn't scared of being on the vent after surgery, I wasn't afraid of ECMO if it came to that, I was simply afraid of rejection.

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.

-Katie

Wednesdays Appointment and Transplant Update

Dalton and I had a doctors appointment here in Pittsburgh yesterday. It could have went better, but realize it could have also been way worse! I will update us one at a time.
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
-Katie