It has been quite a while since I have written and I feel like a slacker!! Although lately, my life is chock full of events that I don't think I can really call myself a slacker or lazy. I wish I had more time to devote to this blog .. but when I don't have time to write, it's a constant reminder that I am out doing things and living life because I am NOT sick anymore!

 A lot has happened since the last time I wrote. We have the set the date for our wedding. I got my dress and was taped to be on an episode of TLC's Say Yes to the Dress! I am now working TWO jobs! I applied to graduate school to get my Master's in Nursing Education, I am hoping to start either in the Fall or by January.

 Okay so the health front .. My 6 month bronchoscopy showed MINIMAL rejection. I was treated with a quick steroid burst. I was slightly crazy and irrational for a few days when I was on 50 and 60mg of Prednisone but I am not back to my maintenance dose of 10mg, which doesn't really seem to effect me that much. At the beginning of this week I had another bronch just to check and make sure the rejection was treated with the steroids (and it was - NO MORE rejection!). They actually say with acute mild rejection that treatment with steroids is 98% effective - which is pretty amazing. The word rejection is so scary. But to have it be completely gone with just a little steroid burst and taper is not so bad.

 I started working again per diem in March at my old job in the NICU. With health insurance and wedding plans developing it was really time to start working full time. Unfortunately there were no full time positions available so I sent out my resume. I ended up getting a full time job in a great hospital in the Neonatal ICU. So right now I am on orientation for my new job and still working per diem when I have a free night for my old job! I have some amazing friends at my old job that I really don't want to part with - so it's fun to pitch in and work here and there when they need me. Not to mention the extra money doesn't hurt when you are have your own wedding coming up and a bunch of friends getting married as well!

 On to the wedding. We booked for next year - October 11, 2013! We are having the ceremony at my local church and then the reception will be held in Long Island right on the water! I went to Kleinfeld's in the city (the most amazing bridal store ever) and fell in LOVE with my dress! The episode will be airing during Season 9 which I believe starts in September. I will have an exact date soon and keep everyone updated!!

 And last but not least, yesterday I actually completely a 10K! For anyone who doesn't know conversions, that's just a tad bit over 6 miles! Joey trained pretty hard for it. I feel a little guilty because I didn't train as hard as I said I was going to, because life just got in the way but I finished and crossed the finish line in 1:30 minutes. Considering this time last year I was in a wheelchair and couldn't breathe without oxygen, it's a pretty amazing feat. Besides Joey, I participated with a few of my amazing cysters; Lyndsey, Piper, Bobbi and Gabby. Lyndsey and Piper are also both post-transplant and Bobbi and Gabby have not been transplanted and still ROCKED it!

 All in all, life is pretty freaking amazing right now. I couldn't be happier, I have so many awesome things going on and to look forward to! All this thanks to my donor Angela. For the last 8 months, her and I have made a fabulous team. I can't wait to see what the future holds and to take us on more adventures!! I also think I am going to start working on my letter to her family. I know it's going to take a little while to perfect exactly what I want to get out and make them see how much I love and appreciate their generous gift of life. I still can't believe it's been over 8 months since I got that life changing phone call.

The future Mrs. Monte!

Yes ladies and gentleman, I am officially engaged and the soon to be Mrs. Joseph Monte! I can honestly say that I think my proposal was the best ever - it couldn't have been more perfect!!

I woke up yesterday morning 4/16/2012 and at 7:30am was a little confused to see my cousin Erin in my living room. She had a gift bag from Joey - that had a letter detailing what my day was going to be like! I thought I was just going to have a special birthday celebration - little did I know what this boy has been planning for god who knows how long!! A limo picked Erin and I up at my house and brought us into the city where I met with a personal shopper that we know at Barney's. Joey told me to treat myself to a new outfit for dinner and a pair of shoes (not just your run of the mill shoes, Christian Louboutin's if I pleased!). After finding a fabulous dress, Erin and I had lunch at Fred's, the restaurant in Barney's. The limo then brought me to the Carlyle hotel, where I said goodbye to Erin and headed up to the Salon. I had my hair, makeup and nails done. Joey then met me and escorted me back to our hotel room, where we were upgraded to a suite with two bathrooms, a kitchen and a PIANO! I got ready and we took a stroll to Central Park. He informed me that the restaurant was in Central Park. We walked down the stairs and stopped in front of the Bethesda Fountain, "looking" for the restaurant .. then he grabbed my hands and turned me towards him, professing his love for me and before I knew it, he was down on one knee! People started to clap, and then my friend Melanie who is an amazing photographer came out from the tunnel and informed me that Joey asked her to capture our special moment! He knew that I wanted my engagement in pictures so that I could always remember it. It was perfect and then ring - beyond my wildest dreams! We then had a little photo shoot before we took off for dinner. I still had no clue where we were eating. We had only called our mother's, he told me that dinner was going to be very private and we could make the rest of the phone calls there. Dinner ended up being at Carmine's - and our families were both there! It was absolutely perfect. We are both extremely close with our families, so having them there to share our special moment was amazing!! After dinner we said our goodbyes and Joey and I went to a rooftop bar at the Peninsula Hotel - the view was breathtaking. We stayed the evening at the hotel - and when we returned there were rose petals leading to the bedroom and shaped in a heart on the bed .. and a bottle of champagne and desserts to congratulate us!

The location also could not have been more perfect. It was a beautiful, sunny day in April - 86 degrees and not a cloud in the sky. Flowers starting to bloom all around the park. It was gorgeous. He proposed in front of the fountain because of what the fountain stands for. It is a large angel sculpture looking down on the fountain with four little cherubs which represent health, purity, temperance and peace. He thought it was very appropriate considering all that I have been through in the last year!

I will never forget this day for the rest of my life. Every single thing was perfect - Joey planned everything to a "T"! I am going to marry my best friend. I am living and breathing with amazing new lungs and life seriously could not be any sweeter!

PFTs = 95% =) HOLLLA!

I was actually stressing myself out over today's appointment. The past month I definitely haven't been AS great with my working out routine as I had been during previous visits so I was a little anxious that I would see a decline in my PFT's, X-RAY etc. As of April 1st I have gotten myself back on the exercising everyday band wagon. I have printed out inspirational pictures and hung them over my treadmill.

If this little boy isn't the biggest motivator ever, I don't know what is. You really don't have any excuses after looking at him, running with a huge smile on his face! All the worrying however was for nothing. My PFT's have increased and are the highest that they have been post-transplant, and I honestly think EVER in my life ... my fev1 is 95%!!! That's with slacking on the treadmill. I keep thinking if I am consistent with working out .. I wonder what they could be at my next appointment next month!! I have also printed out a calendar and am filling in the miles that I run/walk daily - I think seeing how far I am going is a really good motivator as well! I don't want to see any blank days!!
I am so incredibly thankful to my donor. It is National Organ Donation Awareness month and I really want to help get the word out about how amazing organ donation can be .. I am volunteering at a table on friday to spread some awareness and hopefully recruit some new donors!!
I'm also back to work!! I am going through orientation right now .. but it feels amazing to actually have a job again and be part of the working class! I am just working on a per diem basis right now .. to slowly get back into the routine - but I think that I'll be ready to go back to full-time status again soon!! Either that - or continue per diem and go back to school to start my masters! Decisions, decisions!!

6 weeks post op appointment!!

My staples are all officially out!! My PFT's are higher than I have seen them in YEARS and I haven't even really started working out yet. Now that my staples are out, I am allowed to return to Pulmonary Rehab. I am going to call later to set up my schedule. I honestly can't wait to start, and have a little routine to follow! I also bought myself a new treadmill so that when I do not have rehab and it's cold out, I can still work out! Nothing is going to stop me from maximizing the full potential of these amazing new lungs of mine! I'm also allowed to start driving again. I feel like my life is getting back to normal! It's SOOOO crazy. I feel amazing and I am more excited for the new year than ever before!! Bring on 2012!! I'm ready =)

Forever Thankful ..

I'm not the best with words but I feel like it's necessary to get down exactly how I am feeling this holiday season. Blessed and Lucky are two of the main words that come into my mind. I honestly cannot believe that I am sitting here, able to take a DEEP breath in and not end up in a coughing fit turning up my oxygen and wondering when it's going to end. That's all BEHIND me now, and it's completely surreal.

I wish that I could meet my donor's family right now and let them know during this holiday season that they have given me the BEST gift in the entire world. I wish I could hug them and make their pain and sadness go away. I owe my life to my donor's family for making the decision to donate his/her lungs.

Just two months ago, I had lost complete faith that I would still be alive right now. I had gotten so sick that I don't even think I realized how bad I was. I couldn't walk by myself, I couldn't bathe myself. I was completely dependent on my family to help me around, I couldn't breathe without oxygen, I was hooked up to the strongest IV cocktail almost 24 hours a day. I was in so much pain from my diseased, yucky, CF lungs. Now today, 6 weeks after my life saving transplant, I think about what it was like right before surgery, and it seems like a bad dream, but it was real. My donor's lungs are the ULTIMATE christmas gift. I will cherish them forever.

In the new year I cannot wait to start giving back to the community. I want to help spread awareness about organ donation and how amazing and truly life changing it can be for people. I really hope that I can make a difference and make people realize that donating their organs is a beautiful thing.

This is going to be the best Christmas I have ever had. All I need is to be with the people that I love. My family and friends have been amazing throughout my transplant journey. The love and support I have received is completely overwhelming. I want to thank my boyfriend, Joey for being my rock through everything. I want to thank my cysters who have been there for me, preparing me, answering my crazy questions and just knowing what I am feeling and thinking.

I have never been so content and at peace with the world. I honestly feel like for once, everything is happening just like it should. I am very excited to start a brand new year, and put this new found "health" to good use!

A little pre-Christmas excitement!

My two week post hospital check-up went PRETTY well. Turns out there was some fluid building up around my left lung, that went from a small amount to a more moderate amount. Being so new post-op, my fabulous doctor wanted to be aggressive and make sure everything was okay - so I was admitted yesterday. They placed a chest tube, took lots of blood and cultures and did a bronchoscopy this afternoon. Everything looks like it is resolving on its own and I should be able to go home in another day or two once they have definitite results from all of the tests they performed and are sure nothing else crazy is going on. Let's face it, sometimes I don't always follow the "norm", so being extra careful I guess is a GOOD thing!

What's kind of cool is that my really amazing friend Kristy is here in the hospital as well, recovering from her double lung transplant which she received on December 9th! I took a stroll down the hall to see her a little while ago and she looks absolutely amazing!! Our mom's just went to grab a bite to eat outside of the hospital walls. They are really cute! Kristy and I also went to the same Pulmonary Rehab program pre-transplant, so we should be able to go back to the same program once we are both out of here and ready to start! Afterwards instead of going home exhausted, we might actually want to go out and do MORE fun activities!!

That's it for now. I am BORED in here, so you might actually get another update before I leave.

I am getting really excited for Christmas! I can't wait to see the kid's faces when they open all of their presents. I was able to get pretty much all of my shopping done online before I got re-admitted. All I have to do when I get home is wrap, which I actually love to do. I'll get all settled in my room, put some christmas music on, grab some hot chocolate and get to work!

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.