Tuesday, May 24, 2011
Every year I usually write a letter to fundraise for the CF walk and send it out to my mom's address book and also post it online. This year I got it started really LATE because of everything that was going on with the transplant work-up and some other craziness in our family. Needless to say, I wasn't expecting this year to be one of our top fundraising years. Our team has grown from about 10-15 people the very first walk back in 1995 or 1996. This year I had a little over 70 walkers on my team. I had donations from people that I honestly have never met. I really think that CF is going down. I hope there is a cure for CF in my lifetime, but if not, I know there will eventually be. The determination and avid support of people dedicated to fight this disease is completely overwhelming. This year my team, Katy's Krusaders recruited a bunch of new walkers, whom really set the bar high with their own fundraising efforts. I want to thank everyone from the bottom of my heart. My team so far has over $17k and I am still getting e-mails saying that people are still donating! After transplant, I'd really like to give back to the CF Foundation and help them in anyway I can. Whether it's volunteering at walks, participating in meetings, anything. The never ending outpouring of support is what keeps me going everyday. It's amazing how some people have never even met me, yet they say that I have inspired them. Kind of crazy. But I'll take it, and I'll do everything in my power to keep raising money each and every year because we all know fundraising is what financially backs the research on the drugs that could in the future potentially wipe out this horrific genetic disease and stop taking innocent lives of loved ones all around the world.
Friday, May 13, 2011
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.