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.

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!

3 months ...

No ... I am not three months pregnant! Today marks the third month of being listed. I know that 3 months is typically early to receive a call, but of course deep down I was hoping I'd be on of the lucky ones! Unfortunately, it seems that there has been a lack of suitable donors. My friend had her appointment at the TRX center and they said they have been getting calls, just nothing worth while.

I feel like this waiting game has me on a roller coaster of emotions. One day I'm pretty optimistic and can't wait for the surgery and other days I guess I'm the exact opposite, wondering what will happen if the perfect pair of lungs doesn't come for me in time? I'm pretty sure these are all natural feelings, but nonetheless they are kind of stressful to deal with! I mean we are literally talking about life or death matters.

I just started a book tonight called "Joy for Beginners", it's a story about a woman who has a new lease on life after beating cancer. Her and her friends start coming up with ideas that have always frightened them and are going to try to succumb to those fears. I'm hoping it will be an uplifting book because I just finished "A Stolen Life" by Jaycee Dugard and that was pretty heavy, although equally amazing at the same time that she could share her ordeal with such truth and honesty.

Twitter ...

I am still not completely sure how I feel about the whole twitter thing, BUT since I have succumbed to facebook and now blogging, I feel it was the logical next step!

So please feel free to find me on Twitter, and follow me! I can't promise how often I'm going to use it or what I'm even going to post that isn't already on facebook or here, but WHO KNOWS!

My name on Twitter is: katyCFsurvivor

I'm also kind of obsessed with keeping up with celebrities, so while I am waiting on the transplant list - what's one more thing to add to my daily schedule!

I don't mean to brag but ...

My boyfriend is pretty much the best guy there is. I always knew that Joey was an amazing person inside and out. It wasn't until I started dating him and I got sicker and sicker and I realized that he didn't care. He loves me whether I can run along side him on the treadmill or if the only thing he can do to comfort me is come over and watch TV with me.

I honestly feel like I hit the boyfriend jackpot. I would do anything for him and right now it's so hard because I would love to do little things here and there to show him that I love him as much as he loves me, but my health really limits me. He's studying to become a nurse, and he works almost every free minute at Erin's Isle (the restaurant that we both worked at and where we met about 10 years ago!). When I was studying for my nursing boards he would bring me random Starbucks coffee. I wish that I had energy and stamina where I could just do little things for him like that.

We started dating in April of 2008 while I was still relatively healthy, except for the IV antibiotics 2-3 times a year. We went away to a wedding in Aruba in July of 2008 and ever since then my health has gotten progressively worse. We only had a good 3 months where I was feeling good to do fun things all the time. I jokingly told him that he's not going to know what to do with me post-transplant when I am feeling good and have energy again!

This post is not directly to Joey or anyone in particular, but for those of you with CF who think that there are no good guys out there who will stick by you when things get tough, this is to prove that there are! When Joey and I started talking I wasn't exactly looking for anything. We had always been friends, and I always thought he was really cute and the nicest guy ever and that if he was just a LITTLE bit older he'd be my perfect match. Well a few years later, you realize a few years don't matter in the great scheme of things.

I can honestly say that since I have gotten sicker, besides my family and friends support, Joey has been and continues to be my rock. I cannot wait for the day that I feel well enough to make him see that sticking by me, even when sometimes I sleep for days, will eventually be worth it!

CF DR update

So I had my usual every other week appointment with my CF doctor (now that I'm on IV's and the transplant list, they like to keep a really good tab on me!). Nothing really new except that I am finally going to be set up with an insulin pump, something that has been talked about for a few months now, until the whole getting on the transplant list took precedence. I'm still on 6L of oxygen, except this past week I feel like at certain times I need even MORE than that to feel comfortable, especially if I start coughing and can't catch my breath. I've been having really bad pain sporadically in my chest, I think it's more pleuritic, but nonetheless it HURTS and its kills when I have a coughing attack. I was prescribed Lidocaine patches, which so far are doing nothing! Percocet helps, but I think with the impending transplant they don't want my body to be used to a certain amount so that post-surgery I'll need even higher doses of pain meds. I didn't even do a PFT at the office. I have my transplant appointment next week where I need to do another PFT, EKG and 6 min walk test, so I think that's good enough. My entire body has been aching lately. I don't know why. It's my chest (obviously) and my lower back (I think that's from carrying the 6lb liquid oxygen backpack around whenever I am out). I've been having random feelings lately about what if I don't make it to transplant. I've mentioned it to my mom, but everyone tells me I'm crazy and that it's coming. However, it's a REAL possibility. There are so many people who die waiting on the list. I know that I need to be positive, but some days it's just REALLY hard.

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!

Update ..

I haven't blogged in quite a while. I don't know why I just can't seem to commit to keeping up with posts. I am not working at all anymore. Except for pulmonary rehab three times a week, I literally have NO schedule. I have been trying to keep as busy as possible though. My friend Lyndsey lent me a portable oxygen concentrator which has enabled me to stay out longer and even sleep out if I want to! Last week I went to Nancy's new house in long island and slept there instead of driving home late at night. Joey and I are even going on "vacation" to the city this week! We wanted to get away before transplant, but being that I am close to the top of the list and that even if we went to the Jersey Shore or the Hamptons, we could get stuck in hours of traffic if I happened to get the call for lungs while away. We actually have a gift certificate to a steakhouse and our friend Toni Ann bought us tickets to see Rock of Ages, so we are going to get a hotel room and have a NYC vacation! It will be nice to just get away for the night and spend some time with Joey! We don't get a lot of alone time and it SUCKS!

CF Walk 2011 and Katy's Krusaders

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.

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.

Day 6

Day 6 - A picture of a person you'd love to trade places with for a day



As much as it sucks living with a chronic disease, I am very comfortable in this role. There aren't too many people that I would actually trade places with, if it were possible. However, one person I definitely would like to trade with is my older sister Christine. Not only has Christine been my role model since I was a little girl, she is an amazing sister and one of my bestest friends. My sister Christine is amazing. She deals with such a full plate, and still always has a smile on her face and she always seems to put everyone else's needs before her own. She has been like the energizer bunny ever since I can remember. Even now, as a wife and mother of two little boys, she holds down not only one full-time job, but she teaches lectures to PA students and she is taking classes online to further her degree.
Her drive and commitment have always inspired me. I'd like to see what it was actually like to juggle everything she has going on. I also would like to see what it was like to be a PA (Physician Assistant). I am in the medical field, so seeing a different side of the medical model would definitely be interesting.
I would also LOVE to be around my nephews for more than just a few hours. I am not sure that I will ever have children, so being in her shoes for a little while would be amazing. My niece and nephews mean the world to me.

Day 5

Day 5 - A Picture of your Favorite Memory



I have always loved holidays. Mainly, because it gets everyone together, I also happen to enjoy the yummy food that usually accompanies the festivities! Christmas was always my favorite. My older sisters, Terrianne and Jeanine were out of the house by the time I was born, so it was just me, Tricia and Christine on Christmas Eve. My mother always dressed us in matching pajamas and we all slept cuddled in one bed. We tried to stay up as late as we possibly could so that we might hear Santa's sleigh or something else miraculous. We sometimes siked ourselves out and really believed that we heard rustling on our rooftop (mind you, we have NO chimney! so I don't know how Santa would get down!).
The next morning we couldn't get our parents up fast enough. Then the dreaded wait at the top of the stairs, waiting for my parents to get the video camera set up JUST RIGHT. Every year, the same thing and every year it felt like a MILLION hours passed by before they finally said "Okay girls, time to come down".
After the rush and craziness of opening all of our presents, we went down the block. My Aunt, Uncle and cousin live two houses away from us. Every year we would make Christmas breakfast and eat as a large, extended family. Around 2-3 in the afternoon my older sisters came over, and it was like Christmas all over again.
Growing up now, seeing that Christmas is not the awe inspiring holiday it used to be is kind of depressing. I still love Christmas but it's just not the same. I can't wait to have my own kids one day, because I think then it will start to be exciting again. I love watching my niece and nephews open gifts and talk about Santa Claus. Holidays were so amazing and magical when you were little and just believed!

Fevers .. again

Okay so I have been running a fever again. Yesterday the highest it hit was 101.7, and even though I have had fevers as high as 108! (yes, that's right) in the past - with an implanted port they always worry that there is an infection. So they did blood cultures yesterday and it will be a few days before we get the results. They started me on the medication that worked for the last two port infections I had just to be proactive incase it is in fact a port infection (which i hope to god it isn't!).
I have strict instructions that if my fever goes above 101.5 again that I have to go straight to the ER. They are worried about my oxygenation status, dehydration etc. I just really don't want to go back there! My doctor even said, Right now between the 6 antibiotics, the anti-fungal, the fluids and solu-medrol I'm pretty much covered for EVERYTHING. So WHYYYYY am I not getting better?

Day 4

Day 4 - A Picture of Your Night



Okay well my night is not so much fun. So here's a picture of me doing my first IV med of the night. My total night schedule takes a little of 4.5 hours. So yea that is all I will be doing! My boyfriend is working so he will stop by when he is done.
I have had quite a productive day however. Last night when my sister was accessing my port we weren't getting a blood return. We were both extremely confident that it was in the right place. I have also have issues with clots before so I was kind of freaking out. Not to mention this is already my THIRD port since July 2008! She called her friend over who is a pediatric home care nurse and also accesses ports to give it a try, also no luck. So today I went into the city to have a port study. They just accessed my port under fluoroscopy to make sure it was in the right place and checked to see what was causing the blockage. At the end of the catheter a tiny clot, a "fibrin sheath" in the medical world was starting to form. They were able to give me a clot busting medication called tPA (tissue plasminogen activator) which ran through my port for a little over an hour and cleared the blockage, HOORAY!

Day 3

Day 3 - A picture of the cast from your favorite show



Let me first preface this by saying that I have many favorite shows! I love nurse Jackie because it is funny and yet at the same time deals with real issues. I absolutely love the young nurse Chloe and Dr. Coop, who when he gets nervous grabs boobs.
The rest of my top fave shows: Say Yes to the Dress, Teen Mom 2, 90210, Gossip Girl, One Tree Hill, NCIS, and pretty much ANYTHING on HGTV. I love seeing people redoing their houses, or buying new places!

Day 2

Day 2 - A Picture of you and the person you have been closest with the longest.






I believe this section needs a few pictures. There are my sisters, who have been there for me and my bestest friends since I was born. There is also my cousin, who happens to be a year and a half younger than me but one of my closest confidants. We grew up living two houses away from each other, so we were more like sisters than anything else. Then there are the non-family related friendships. That prize of longevity goes to Sara.







Sara and I met in nursery school at the wee age of four and still remain close to this day (In the picture I am Little Red Riding Hood and she is a Ballerina). We went to school together all the way up until college, where I decided to go away to school and she stayed home. I'd like to say we stayed as close during that time, but college is a busy time for everyone. We still kept in contact although we didn't see each other as much.
Fast forward to today. We are still friends. We have been through rocky times. Her and I both have made mistakes in our friendship but as adults we realize that sometimes it's better to forgive and move on. Good friends don't come around often, so when you realize someone is really truly your friend, you better hold on tight and do everything to keep that friendship alive!

Day 1

Day 1 - A picture of yourself with 15 Facts



1. I like pretty much ANYTHING with cheese on it.

2. Growing up with CF has really impacted my career choice in becoming a nurse. I've always had amazing nurses and I always wanted to be just like them. Now that I work with premature babies and their scared parents - I feel I am giving back somehow.

3. Speaking of work, I LOVE to work. I hate being sick and stuck at home. If I can I will work until my doctor literally tells me I can't anymore. Some people like to think that it puts a strain on me, etc. Work is my escape. I am taking care of someone else who is even sicker than myself and I can stop thinking about my own health while I am there.

4. I LOVE massages.

5. Getting my puppy Chloe was an extremely spontaneous adventure after a lovely dinner and glass or two of pinot grigio, but I would be lost without her!

6. I am 27 and unfortunately, am just learning the very hard lesson of who my true friends are and who is just out for themselves.

7. PINK is my favorite color.

8. I love shopping for make-up, bags and shoes.

9. My family and I are extremely CLOSE. I have four sisters and they are all my best friends.

10. I'm kind of terrified of the ocean, and I can't really swim too well. Although I WISH that I could swim and didn't fear the water because I would one day like to try surfing.

11. I'm kind of a nerd. I love to read books. I was class president in high school and senior class president in nursing school. One day I would actually like to teach future nurses!

12. I have been dating the most amazing guy since April 2008 and he is my absolute rock.

13. On a good day, when my lungs aren't hurting - I like to drive around and sing at the top of my lungs.

14. I'm not yet engaged, but I'm pretty sure I know my exact wedding dress AND my bridesmaid dresses! (a girl can dream!).

15. I sometimes have somewhat of a potty mouth - which surprises some people because they think I'm this sweet, innocent girl, but that's not really me. I'm quite complex.

feeling slightly better for the first time in 4 weeks!

I woke up feeling pretty crappy - but not AS horrible as I have been the past four weeks. My sister, brother-in-law and nephews came over and spent some time. I colored with my godson and just had a good time. They seriously melt my heart. Andrew will be three next month and Matt is 18 months. I was actually off of oxygen for a good two-three hours and took my pulse ox and it was 97 on room air! I could barely believe my eyes.
My sister was just saying yesterday that I am usually the type of person who doesn't gradually get better but that I sometimes just wake up one day and am a completely different person. If that's the case, I can't wait to see what tomorrow brings.
My video blog up there is just a brief little statement of how I feel and how much I am loving blogging. My family, boyfriend and friends have been amazing. My parents, sisters and boyfriend in particular have been in and out of the hospital with me, they have sat with me and just listened to me cry and vent all of my frustrations. A few of my friends have stopped by and spent time with me now that I'm home and much more accessible than Manhattan. Last but not least, I have learned and been inspired by all of the CF'ers whose blogs I'm following. CF is definitely a scary disease. Even scarier since they stress cross-contamination and pretty much alienate you from bonding with the only other people who are going through the exact same thing. The internet has changed that. It's amazing to see everyone be so brutally honest and divulge some pretty serious, deep stuff but at the same time it's refreshing because sometime's I read something and I have that moment where I say "Oh my god, this person knows to a T what I am going through". That in and of itself is an amazing gift. I've also realized how damn STRONG we CF'ers are!

Still on IV's

I went to the doctor's the other day and of course not much has changed. She said that I am definitely heading in the right direction and that my lungs sound much better now than when I was in the ICU two weeks ago, but they are still not great. Let's face it, that much I knew. I feel horrible still. For a few days I was able to sit at rest without oxygen but all of a sudden I need it 24/7 again. I am so exhausted I find myself sleeping whenever I get a chance, which isn't often with the medication schedule I am on. My weight has fallen again to 97 pounds which isn't horrible - but right before this hospitalization I was actually up to 110! I was able to wear all of my old jeans and it felt amazing. After my hospitalization in July/August I had slipped down to 88 pounds and was wearing a size 12 from the little girls store Justice. I am going back to the doctor again on monday and we will do a PFT, XRAY and decide whether or not to stay on IV's. If I continue, I will most likely look into going on short term disability for work, which is the last thing in the world I want to do. However, I know that I really need to just think of myself and put my health above everything else. I know what I need to do, it's just so hard when the majority of your life CF never interfered and now that's all it seems like it's doing. Well that's it for now, I am going to try and get some sleep. Good night all!

Frustrated ..

So my friends it's super bowl sunday. While I am not an avid football fan, I must say I usually enjoy watching the game for the funny commercials, and of course the awesome food! I was supposed to go over to Joey's house and watch with his family - but am home instead. Last night I actually did my meds a little early so I could get a good night sleep. Well after laying in my bed wide awake for about 3 hours I decided maybe I would be more comfortable on the couch. My puppy Chloe followed me downstairs and laid next to me. I don't know if it's the steroids or what - but my head felt like it was so tired and the rest of my body felt like it just couldn't stay still. After a few hours of getting up and repositioning myself even my puppy got annoyed and slept on the floor next to me. At 8am when my alarm went off to start my morning meds - I was STILL awake.
Tomorrow marks three weeks on IV's (TRIPLE antibiotics, steroids and fluids PLUS two oral antibiotics). While I am healthier than I was in the ICU just a few weeks ago, I feel I am really lagging on the recovery part. I have managed to go parts of the day without wearing oxygen and feel okay, but if I walk even 10ft I get so short of breath and need oxygen immediately. My o2 sats drop to the 80's and my heart rate sometimes hits 160-170. This is NOT OKAY.
I really wanted to return to work this week but I don't see that happening at this rate. I am so torn whether I should just go out on disability or maybe give myself one more week. Problem is, I've already been out three weeks AND used all of my remaining vacation and holiday time. I am in the negative when it comes to sick days.
I don't know if maybe I'd be better off back in the hospital, where I don't have to worry about hooking myself up to all of these medications at crazy hours or whether I should keep fighting from home. I'm just so exhausted and I want to feel better.

Prednisone - how I loathe you ...

I have literally been on prednisone for the past two and a half years AT LEAST now .. CONTINUOUSLY. I honestly don't even feel that it makes much of a difference in the tightness in my chest anymore. I had gotten myself down to 2mg every day, another week and a half and I would have been prednisone free and then BAM - in the ICU, getting solumedrol boluses through my IV. Prednisone makes me insane. I hate the way I feel like I am a completely different person. I don't sleep well, I am always shaking my hands and legs. When I sleep at night I get the WORST night sweats and wake up completely SOAKED through to my sheets. It is so unpleasant. I have been on a million different medications all with different annoying side effects but Prednisone by far is the thing I HATE the most.

Lung Transplant

Well it's been a pretty crazy two weeks. I started feeling sick a few weeks ago but I honestly thought it was just a cough and chest tightness related to my monthly period. A week went by and I started feeling sicker and running fevers. I knew something was wrong, I just felt like something more was going on but couldn't put my finger on it. My doctor had added another oral antibiotic last week but so far it was not helping. Last monday January 17th my dad brought me into the ER. I was running fevers, had a horrendous cough with much thicker, darker mucus than ever before, I was also in tremendous pain and had a humongous headache. After being in the ER for 12 hours, they decided to transfer me to the MICU because I was desaturating and not able to breathe at all. They did blood gas levels and I had so much carbon dioxide in my lungs that my brain kind of shut down and told my lungs to stop cooperating. They put me on a bipap machine, which was enough to lower the amount of CO2 in my blood without them having to intubate me. I am extremely lucky that they did not have to intubate me, but it was extremely scary. For the first time in my life, I literally could not catch my breath. I thought that I wasn't going to make it. My family was by my bedside the entire time and said that I was so out of it that my eyes kept rolling to the back of my head. When I woke up and finally realized where I was and how bad things were I realized how serious things were. Joey and my parents made a wall of pictures of family and friends on my wall to remind me to keep fighting - because for a while, nobody was really sure I was going to pull through.
When I was transferred out of the MICU to a regular floor I was shocked by news that a good friend of mine, Tina Collotta with Cystic Fibrosis had lost her battle that morning. I have not been more upset or devastated in a long time. Tina's death kind of sent a chill through my body. Her and I have been friends online for about 10 years now and we always had very similar situations CF wise. We always seemed to be at the same baseline with out PFT's, always going in the hospital at the same time, I just completely related to her situation. I met her a few years ago. We were both on home IV's, but we decided to grab dinner and it was so much fun. Her and I both had the same goofy, laid back personality. I still can't believe she's gone. The most upsetting part of this whole thing is that she was taken way too fast. She literally just got actively listed for a double lung transplant this past week, she has a beautiful little girl who is going to miss out on having an amazing mother like Tina in her life.
My doctor and social worker talked to me this week and think that its time that I start looking into transplant. My PFTs are technically not low enough to get actively listed right now, but they are very close. The fact that I have been in an ICU twice in the past 6 months and almost got intubated is also a reason they want to be proactive. I am scared and at the same time extremely excited for this new journey. I know that there are risks and things can go wrong, but I am so sick of living my life in and out of the hospital. For the past two years everyone has seen my health decline. It seems like I am on IV meds every 2-3 months and in between those times I usually only feel good for 2-3 weeks at best. It's not fair. If there is a pair of lungs out there for me, that can give me a second chance at life, I want it. I am ready for the life style changes that transplant requires.