What a wonderful year!

My transplant center has a sign up that says "Amazing Things are Happening Here", and I honestly am going to agree 110% with them! Since March they have been kicking ass at saving fellow CF patients lives! In March, my friend Charlie had a double lung transplant. Lyndsey followed in April! Most recently, my friend Allison who had a lung transplant back in 2004, needed a kidney transplant, and received one on 11/9/11 from an amazing friend of hers. Who knew I would be called two days later for my double lung transplant, followed almost one month later by another amazing friend of mine, Kristy! This is going to be one of the BEST holiday seasons ever!! I can't even imagine that we have all been blessed enough to have a second chance at life, free from the CF burdens (coughing, hours of therapy, hospital stays, nebulizers etc.). Not that we are in the clear and scott free because we had a transplant. There are tons of medications, and doctors appointments and tiny things that you need to pay close attention to, BUT doing all this and feeling GOOD is NO comparison to what it was like dealing with the old, sick, crappy CF lungs.

The picture above was taken this summer. Lyndsey, Piper, Kelley and Alli all had their new lungs already. Alli was waiting for her kidney, and Kristy and I were waiting for lungs. All of our prayers have now been answered! The next time we get together, there will be NO oxygen cannulas, and rushing home because we ran out of oxygen! We'll be able to laugh without coughing, maybe even take a stroll on the beach once the weather gets warmer! There are so many exciting things that are now a possibility. I am so lucky to have this group of girls to go through this amazing journey.

That's it for now. I promise I will try and update more often! Please pray for all of our donor families, as this first holiday season without their loved ones is probably going to be the hardest. Also, please, please, please, become an organ donor if you aren't already! It really does save lives - just look at the picture above! That's SIX people who would not still be here right now if it wasn't for organ donation.

I got the call and it was a GO!

This isn't a long message - I just wanted to let you all know that after 18 days in the hospital I am now home with my brand new lungs!! I am forever grateful to my donor and donor's family for giving me a second chance at life. I haven't felt this good in YEARS! 11/11/11 at 11:11pm I received a call from my transplant center telling me that they had a match for me. From then on, it's all kind of a big blur to me. I was in the hospital for 18 days, and I am finally home!!

Please keep my amazing friend Kristy in your prayers, as she really needs a call to come as soon as possible!

Post Transplant Goals

While I am waiting for the call to come I thought it would be fun to start thinking about some of the things that I would like to do when I am recovered and feeling great. I want to challenge myself and do things, whether they scare the living shit out of me or not. I truly want to live life to the fullest and experience as much as life as I can. My sister Christine said that if I decided to do such things as sky-diving, surfing etc. (which by the way are most likely going to be on the list), that she would like to do it too. I'm excited to experience things I have never experienced before, but more than that I can't wait to do the things that I used to enjoy and no longer can. I can't wait to be able to go skiing with my whole family. Now my niece and nephews are old enough to ski, so our family vacation will be so exciting. I can't wait to just work out and push the limits. One thing I have definitely regretted is not being more active with exercise. I would always get started and get in a routine, but as soon as I started feeling crappy, I let that be an excuse to stop, when in reality I should have just pushed harder. I guess that's one of the biggest life lessons I've learned. And for anyone with CF now, who's health and PFT's are still at a pretty good spot - PLEASE, take my advice and exercise your ass off. It can do wonders. Just check out amazing fellow CF'ers like Ronnie Sharpe and Jerry Cahill. A CF friend of mine from clinic has even run the NYC marathon a few times (and not with new lungs, with his original yucky CF lungs). I can't wait to take a deep breath and not have a huge coughing fit afterwards. I can't wait to travel around backpack free (my liquid oxygen backpack - my friends have ever so graciously named me Dora). I can't wait to wake up every morning and be able to stick to my plans because I KNOW I'll feel good. Today I was really looking forward to hanging out with one of my best friends Sara and our friend Aurora who we haven't really seen from HS, but I had a crappy night sleeping, my lungs felt super tight and I just could not get out of bed. I HATE that feeling. I also want to give back to the CF community in someway. Whether it's fundraisers, or volunteering for some of their functions, giving speeches. I just feel like If I get this second chance at life, I want to make the most of it and I want to be someone that people can look up to!

insomnia strikes again

Being that for the last few weeks it seems like I can never sleep through the night, I don't know why I haven't been catching up more on my blogs. I guess that's also because I don't feel like much is going on in my life right now. I don't work. I wake up, I take my pills, do my morning therapy and IV medications, rest for a little, then some more meds in the afternoon, and then the same routine at bedtime with the therapy, IV meds and bed time pills. On monday, wednesday and fridays, when I feel well enough I go to Pulmonary Rehab for an hour and a half, in hopes of gaining some muscle to make my body as strong as it possibly can be for transplant. My good friend with CF Kristy is also in my Rehab class, and I have to seriously thank god that she is. We are the only young people in the program, everyone else pretty much is old and has lung problems due to smoking their entire lives, it's a blast let me tell you!
Next week it will be three months that I have actually been on the list. I know that's not long in comparison to some people and I have no right to complain but for some reason I just thought that my new lungs would be here by now. I have to say my spirits are in a much better place. For a while I was kind of freaked out, not knowing if this was really the right step for me. Now, I am 100% sure that transplant is the thing I need next. I am constantly on 6L of oxygen now at all times, and if I am actually doing something strenuous could use more. I've been putting on some weight, but I am still fitting in my abercrombie kids size 12 shorts haha. My friends, both new and old have all been pretty amazing about keeping in touch with me and trying to get together, which has really helped! I feel like I sometimes have a busier schedule now than when I worked full time! I do have to take it easy at times though because after a day or two of fun, sometimes I need two or three days in bed to recover fully.
I guess all in all, I've realized lately that life could have been easier, but I truly believe that it is the struggles that one person must overcome which makes them the person they are today.
I'm just REALLY looking forward to the day where I can take a deep breath in, not feel pain and start a long, happy future with my amazing boyfriend and give back to my family who has turned their worlds upside down during this whole transplant process!

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.