Friday, May 13, 2011

ACTIVELY listed

I apologize for not keeping up with my blog. I started the 30 Days of Blogging in hopes to really keep up to date with my posts - but life got kind of crazy for a little while. Since my last post a LOT has happened. I went through the evaluation process for a double lung transplant and found out today, that I am now ACTIVELY listed. The evaluation itself wasn't too bad, just time consuming! I was in the ICU again for a few days in March. They ended up taking out my port because I ran 105 fever. The blood cultures came back negative but because I have had two ports that were infected before they didn't want to take a chance. I went about two weeks on oral antibiotics and two inhaled antibiotics before I was back in the hospital with high fevers. Now they knew that the port wasn't the source of the fevers, so I got ANOTHER port. My lungs don't respond as well as they used to to oral antibiotics. My doctors think it's probably because they have formed a film and that now only IV antibiotics are strong enough to penetrate through. I am still on oxygen 24/7. I haven't been able to return to work which really stinks. Some people who are listed for transplant are well enough to be able to work while they are waiting for new organs, but because of my dependence on oxygen it unfortunately isn't an option for me. My doctor thinks that she is going to keep me on IV antibiotics until I get the call for lungs, because I seem to run a high fever the second I come off of IV's. I'm still kind of in shock that I am listed. The whole process happened so fast it's kind of amazing. I don't think it is really going to hit me until I am literally in the hospital being prepped for surgery. It kind of feels surreal for now. I am extremely grateful that I am going to get the opportunity to have a second chance at life. I'm deeply saddened however that someone has to pass away for that to happen. I will be forever indebted to my donor's family. Words can't even express the emotions that I'm already feeling thinking about the actual transplant and all that goes on with it.

3 comments:

Katherine Gilkey said...

AMAZING NEWS KATY!!!! so happy for you!

Katey said...

So excited you are actively listed. You are in my prayers! I know it's an emotional roller coaster with ups and downs; but it is well worth it! And you have so much support!

Kara said...

Hi Katy, Just found your youtube video which eventually led me here to your blog. I just wanted to let you know how inspiring you are and that your video is deeply moving. I do not have cf so I cannot even possibly understand what you have had to go through, but I love the fact that you don't let a disease define you as a person. I read your post about being actively listed, and my thoughts and prayers are with you. Keep fighting and stay strong : )