Sunday, January 25, 2015
Normal
I'd give anything to be a normal 24 year old. All I want is a job, a life. This is no life. I'm stuck in limbo. I spend 95% of my time at my house in bed. It's miserable. Don't feel sorry for me. I'm not used to this. I wasn't raised to be this way. This isn't a life. This is hell. -Katie
Saturday, January 24, 2015
New Drugs!
So, for the longest time, I have prayed for this. Before I met Dalton, before I got oxygen, before I was referred to the lung transplant program, I prayed for this. Now, it is finally happening! No, this isn't a cure, but this medicine will help patients with Cystic Fibrosis more than it ever has before!!! I urge you to check out the link!
http://www.cff.org/pipeline_mobile/details.cfm?id=86
The new drug will help CF patients with double deltaf508 (my mutation) to tackle the problem at the cellular level. Pretty awesome news.
I'm still waiting on anything to be done with my insurance so I really have no clue what's going to happen. Even if I do get insurance back, I might try to stick it out to wait for this new medicine. I realize I'm really sick and this may not help me, but I'm willing to try anything before I get a transplant.
I'm sure some of you don't know, but with transplant, you're basically trading one disease for another. Sure, you may be able to breathe but there is so much that comes with getting any kind of organ transplant. What some of uou may not know is that you're even at a higher risk to get Cancer. (One of my CF friends is currently battling that).
A lot of people don't understand this but... Transplant Is Not A Cure.
-Katie
http://www.cff.org/pipeline_mobile/details.cfm?id=86
The new drug will help CF patients with double deltaf508 (my mutation) to tackle the problem at the cellular level. Pretty awesome news.
I'm still waiting on anything to be done with my insurance so I really have no clue what's going to happen. Even if I do get insurance back, I might try to stick it out to wait for this new medicine. I realize I'm really sick and this may not help me, but I'm willing to try anything before I get a transplant.
I'm sure some of you don't know, but with transplant, you're basically trading one disease for another. Sure, you may be able to breathe but there is so much that comes with getting any kind of organ transplant. What some of uou may not know is that you're even at a higher risk to get Cancer. (One of my CF friends is currently battling that).
A lot of people don't understand this but... Transplant Is Not A Cure.
-Katie
Saturday, January 17, 2015
2 Months Post Transplant
Today marks 2 months since Dalton got his transplant. He continues to make progress in his healing everyday. I am so proud of him. He finally has his trach out and all chest tubes except 3 (2 of those might get taken out tomorrow!). Other than his chest tubes, he's doing good. I honestly am just so happy for him. I can't even imagine what it feels like. Here's to 2 months post transplant Dalton! You're awesome!
As for me, no updates. I still don't have insurance that will cover my transplant and it is way too expensive to even think about me paying for it. Since I got discharged from UPMC, I have pretty much been on ivs the whole time except for a few days. It's not fun at all and I never get out of the house. I would love some energy just to go to Walmart or something. I hate being locked up in here. There's really nothing to update. Daltons improving and that's all I pray for. I'm so happy -Katie
As for me, no updates. I still don't have insurance that will cover my transplant and it is way too expensive to even think about me paying for it. Since I got discharged from UPMC, I have pretty much been on ivs the whole time except for a few days. It's not fun at all and I never get out of the house. I would love some energy just to go to Walmart or something. I hate being locked up in here. There's really nothing to update. Daltons improving and that's all I pray for. I'm so happy -Katie
Sunday, January 11, 2015
Sunday Morning Early Update
The past week was a very emotional and trying time for me. At the beginning of the week, I honestly wasn't sure where mine and Daltons future was going to go. So let me begin...
Dalton got his transplant on November 17th and has been in the hospital ever since. There have been some setbacks (quite a few actually) that lead me to pray harder than I ever had in my entire life. After Dalton got his lung transplant he started rejecting his new lungs (very common in the first year or so). Although I knew it was common, it didn't make it feel any better. So they started him on thymoglobulin to treat his stage 3 moderate rejection. The stages for rejection are as follows: 0 being no rejection and 4 being severe rejection. There had also been problems with his lungs, developing a new bacteria and no sight of chest tubes being taken out (and there were 5 of them). So anyway, he has had a really rough past few months. Fast forward from all the horrible news and mess that I got from early in the week to today. Dalton texted me and it was a picture of him. No oxygen and no trachea hooked up to anything! He was breathing all on his own!!! Can you believe it!? I was ecstatic! So I'm guessing the thymoglobulin is working!
Dalton got his transplant on November 17th and has been in the hospital ever since. There have been some setbacks (quite a few actually) that lead me to pray harder than I ever had in my entire life. After Dalton got his lung transplant he started rejecting his new lungs (very common in the first year or so). Although I knew it was common, it didn't make it feel any better. So they started him on thymoglobulin to treat his stage 3 moderate rejection. The stages for rejection are as follows: 0 being no rejection and 4 being severe rejection. There had also been problems with his lungs, developing a new bacteria and no sight of chest tubes being taken out (and there were 5 of them). So anyway, he has had a really rough past few months. Fast forward from all the horrible news and mess that I got from early in the week to today. Dalton texted me and it was a picture of him. No oxygen and no trachea hooked up to anything! He was breathing all on his own!!! Can you believe it!? I was ecstatic! So I'm guessing the thymoglobulin is working!
On a side note, my aunt passed away at 3:00 yesterday afternoon. She was really sick but she didn't lose her battle, she won. And now she has the ultimate prize. Fly high, Karen. -Katie