Live.Love.BREATHE =)

6 weeks post op appointment!!

2011-12-27T10:02:00.001-08:00

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 ..

2011-12-23T21:11:00.001-08:00

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!

2011-12-14T15:54:00.000-08:00

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!

2011-12-11T14:29:00.000-08:00

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!

2011-11-30T21:16:00.001-08:00

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 ...

2011-08-18T00:47:00.000-07:00

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 ...

2011-08-13T23:56:00.000-07:00

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 ...

2011-08-13T15:56:00.000-07:00

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

2011-08-12T19:04:00.000-07:00

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

2011-08-10T22:28:00.001-07:00

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

2011-08-08T21:56:00.000-07:00

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 ..

2011-07-30T14:51:00.001-07:00

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

2011-05-24T22:46:00.000-07:00

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

2011-05-13T19:09:00.000-07:00

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

2011-03-08T20:22:00.001-08:00

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

2011-02-20T12:14:00.000-08:00

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

2011-02-18T16:54:00.001-08:00

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

2011-02-16T17:36:00.000-08:00

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

2011-02-15T11:40:00.000-08:00

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

2011-02-14T16:25:00.000-08:00

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

2011-02-13T19:57:00.001-08:00

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!

2011-02-11T14:46:00.000-08:00

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

2011-02-09T21:38:00.000-08:00

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 ..

2011-02-06T15:56:00.001-08:00

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 ...

2011-01-28T17:49:00.001-08:00

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

2011-01-27T18:28:00.000-08:00

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.

new iMAC and pink vest!

2010-12-21T19:22:00.000-08:00

Study drug visit, IV antibiotics, and Bone Density - OH MY!

2010-11-10T11:50:00.001-08:00

So yesterday I headed into the city for another Vertex study drug visit. The visit consisted of PFT's, blood work, EKG, a sweat test then I was given a meal and 30 minutes later I took the Vertex pill. I've been sick for a few weeks now with this lingering cough and I'm on vacation from work for a week so my doctor and I decided to start home IV's. I'm definitely not sick enough where I need to be hospitalized. This is more of a "tune-up" I would say. So my sister accessed my port the other day and last night I began what I hope is only two weeks of IV meds. Here's to beating the change of weather and staying healthy!!

Yesterday after the study visit was over, I stayed and talked to my doctor. There are a bunch of new things that I am going to begin in hopes to improve my lung function and over all well being. For starters, I am going to start acupuncture again and make sure that I make it there every week so I can feel the full effect. I started last year - but my insurance at the time didn't cover it - and to be honest I couldn't afford what it cost plus the hassle of getting into the city every week. I did feel it helped though, so I am going to give it another go! My doctors offices are finally moving across town into a new building and she said there's an amazing gym there and a fabulous pulmonary rehab that I would probably benefit greatly from. I am going to try and schedule both acupuncture and pulmomary rehab on the same day so I can just make a day of it in the city once a week!

Next week I am finally going for a bone density scan. I regret that I haven't gone earlier because I really feel that I have some issues now. I have random bouts where my hands and feet just lock up. If I'm holding something tiny, such as a pen my hand usually drops it. Whatever this is - I want to get to the bottom of it - because it hurts like a bitch when it happens and it can really affect my career.

Oh and I ordered the new washable vest, in PINK of course! Can't wait til it's here - I'll put up some pictures!

Did I just jinx myself?

2010-11-06T13:24:00.000-07:00

I find it rather odd that today I am on the phone with my doctor discussing my very gross, thick, green mucus when just about two weeks ago I was posting about how good I was feeling lately. I'm not superstitious by any means - but maybe I did jinx myself. My 02 levels are down again - 90% on room air and my heart beat is fast (138bpm) and my cough is, well it's productive and definitely needs some high potency medications.

I am actually on vacation from work starting tomorrow for an entire week. I guess it's good that I am going to nip this in the bud and not have to take anymore time off from work. I also feel like maybe someone is playing a trick on me. Like they knew I had a weeks vacation coming up - so instead of letting me just relax and enjoy - they had to make my lungs revolt so that I have to pay very special attention to them while on vacation.

Feeling crappy

2010-11-05T20:39:00.000-07:00

In less than two weeks I've gone from feeling pretty decent to feeling god awful. I am trying my hardest to not let this turn into something but deep down I feel it's time for IV's once again. Oral antibiotics seem to do absolutely crap for me lately. I hate the fact that I know at certain points, when it's more than a little cold and that my secretions are getting thicker and darker that IV antibiotics are the ONLY thing that are going to make me feel better. I have been drinking so much water that I literally run to the bathroom every hour. Trying to flush whatever this is out of my system just isn't working. I added an extra 10-15 minutes of using the percussor (which I dug out of the closet, it hasn't been used in years) after my vest therapy.

As far as medicine compliance goes I have to say I am extremelyyyy vigilent. I make sure that my chest PT is done, my nebs are done and all of my pills are taken. There are however two things that I am still struggling with.

One is exercise. I hate exercising. I really do. I have read SO many blogs and articles about how exercising is the best thing for CF and yet still I am reluctant to make it my priority. I know I have to add it in and be commited - but I don't know how someone goes from having trouble walking up a flight or two of stairs to becoming a full fledged gym rat. I WANT to be that gym rat - I just don't know how to get to point A to point B.

The second thing I need to get more serious with is insulin. I take my standing dose of insulin every day but I sometimes forget to cover my carbs, especially if I am out eating and not in the comfort of my own home. I was diagnosed with CFRD when I graduated college in 2006. For the first three years I didn't have any complications. I took an oral hypoglycemic pill before meals and that maintained my blood sugars at regular levels. The last year however it's gotten worse. For the first time in my entire CF life I had trouble with my weight. I lost about 15 pounds in a short amount of time. I was started on insulin and was very good with it at first. I even bought a journal where you wrote down your sugars in the morning, before meals, 2 hours post meals, before exercise and before bed. My problem now is that I feel even when I count my carbs and take the exact dose that I need 1 unit per 15g of carbs, I sometimes get really hypoglycemic after. And that my friend, is the WORST feeling ever. I get so shaky and dizzy and just feel like I have no control over my body. I absolutely HATE that feeling. I've actually talked to my doctor about this and we discussed possibly getting an insulin pump. Apparently some insurances don't cover it but luckily mine does. So I have the number of this endocrinologist and I am going to give it a shot. It's not that I want another medical device to scream, "Hey, i'm sick!" but if this pump infact does make it easier to not get those dreaded low sugars and I don't actually have to stick myself with insulin multiple times during the day - I figure why not. It can only help. If I don't like it, I can always say no thanks - I'm done. So we shall see!

Fundraiser in MY honor!

2010-11-02T07:27:00.000-07:00

This blog is actually a little late but it is definitely something that deserves recognition. Everyone knows the past two years have been hard on me healthwise. I had to stop working for an entire year because my hospitalizations were so frequent and I just couldn't seem to stay healthy for a long enough period in between stays to actually start a full-time job again. I helped out at Erin's Isle (the restaurant I worked at since I was 14) for some extra cash - since my parents were pretty much supporting me. In that time period, I stopped work, moved out of my apartment and back home and spent most of my free time either in the hospital or at home doing IV medications. I unfortunately still had bills to pay, a car payment, student loans etc. My parents and family helped me out as much as they could - but let's face it, the economy has been tough on everyone lately. Joey decided to put together a fundraiser at Erin's Isle where all the tips that he made at the bar that night would go directly to me to help me out with my financial matters. He not only made a ton of tips but he also sold 50/50 raffles to increase profits. The night was a hugeeeee success. So many people showed up that night (I wasn't there because it was a surprise originally). The next morning Joey showed me the results of the night and I was completely floored at the generosity and the willingness of people who truly love me by the support that was given. Thanks to that night - and a little loan from my amazing boyfriend I will be officially done with paying thing off in less than 6 months. The stress that has been lifted from my shoulders is amazing. I am truly the luckiest girl in the world to have a boyfriend as amazing as Joey and a fabulous family, both mine and Joey's!

Hello Fall ..

2010-11-02T07:20:00.000-07:00

I actually don't mind the fall weather. I LOVE brining out the UGGs again and comfy sweaters. The thing I hate is all the yucky viruses going around. It seems like everyone has sore throats, is sneezing and coughing non-stop. I am always very cautious and good with hand washing - but this time of the year I am simply OCD about it. Working in a hospital I'd have to say I wash my hands at LEAST every 5 minutes or so. That can make for very dry, yucky hands - thank goodness for hand lotion! I honeslty cannot believe it's already November. Time has flown by so fast it's crazy!

I took a week off from work next week - not to go away - but simply to relax and get my room organized. I think it's time to do a major clean up. I also want to make room for a desk so that when I start back to school I am not crouching down at this little lap desk that I now have my laptop on. For someone who's prone to bone problems later on life - it's probably not the best set up right now!

Here's to the fall and the winter - let the damage not be so bad on my lungs this year! I might just have to buy a pretty new scarf, hat and gloves to keep the cold air out of my bagpipes!

2010-10-22T05:22:00.000-07:00

I have been feeling really good lately. I still get random bursts where I am really short of breath but overall I feel like I am living a normal life again! Work is great! It's been very busy in the NICU lately and I really feel like I am starting to get the hang of things. I am learning new things day by day and enjoying each and every moment. I love that I am able to help not only the babies but also their anxious and worried parents. Being a nurse is everything I have always imagined and I am so happy that I did not give up on my goals! I am actually looking into starting school again to get my Masters degree! I already sent the application in - now I just have to send all of my transcripts in (since I took summer classes at a bunch of different schools over the years). I get tuition reimbursement with my job and the program I am looking into is actually not expensive at all because its a city school! I would actually end up almost getting my masters for free! I am applying to specialize in parent-child nursing. My ultimate goal is to remain working in the NICU and start teaching at a nursing school or university on a part-time basis! Ever since I started nursing school I always envisioned myself teaching a nursing class or even clinicals in the future!

Cough

2010-10-07T04:07:00.001-07:00

Dear Lungs,
Please stop waking me up in the middle of the night. You are loud and obnoxious and you aren't even productive, so you are essentially doing me NO favors. My bronchoscopy showed nothing of importance and I am NOT ready to go back on IV's - so please just leave as quickly as you came!
Please & Thank You,
Katy =)

Nebulizers/Compressors

2010-09-24T06:17:00.001-07:00

Okay so I have noticed that a lot of CF patients use a variety of different nebulizer systems and nebulizer cups.

I was just wondering what nebulizer system does everyone use. What cups do you use. And do you use different systems/cups with different medications?

For example I am on cayston - so I use the Altera nebulizer system and cups JUST for Cayston.
I use the Pari LC cups for the rest of my meds and I use the Pari ProNeb Ultra 2 compressor with those.

Vertex

2010-09-23T05:14:00.000-07:00

Taken from the CFF.org website
"Vertex Pharmaceuticals is developing two oral compounds designed to treat the basic defect in Cystic Fibrosis - a faulty gene and its protein product, called CFTR.
VX-770, the most advanced of the two compounds, is known as a potentiator and is designed to allow CFTR located at the cell surface to function correctly.
Vertex is also developing VX-809, known as a corrector, which is designed to move defective CFTR to its proper place in the cell."

In January of this year my doctor's office called me and asked me if I wanted to participate in a new drug trial. It was for Vertex 770. They wanted a group of CF patients who were homozygous (carried two of the same genetic mutations) for DeltaF508. I was one of the few patients at my CF Center that was eiligble for this. I jumped at the chance! In order to qualify for the study you had to have a FEV1 of 40%. Luckily at enrollment date my FEV1 was 50%. I began the 16 week study. My first PFT which is the one that counts was only 38%. But since I had already enrolled in the study at 50%, I was still able to partake. It was a double blind study. That means that both myself and my doctors did not know whether I was receceving the actual drug or the placebo. The study entailed me keeping in touch with the doctors every two weeks. I either had to go into the office for a sweat test, multiple blood draws, pulmonary function tests and EKG's or follow up with a phone interview. The pill was a large blue pill that I had to take twice a day after consuming a high calorie meal. To this day I still am not sure whether I was on the placebo or actual drug but I am glad that I participated! At the end of the 16 weeks you were able to continue on to the second part of the trial if you had either a 10% increase in your FEV1 and/or a decrease in your sodium chloride level from the baseline sweat test that was drawn. I am not sure what my last sweat test result was but, I did have an increase in my PFTs. Day One (FEV1 - 38%). Week 16 (FEV1 - 43%) which calculated to be over a 10% increase.

In June I began the open label part of the Vertex 770 study. The study is going to go over a 96 week period. I am now officially getting the real drug. I still have to go to the doctors for visits but not as often as the first part. When I do go I still get blood draws, EKG's, PFTs, and sometimes a sweat test. I also have to go for liver function tests every two weeks. I got hospitalized at the end of June and my doctors made me stop taking Vertex for a little while because I was running fevers and they wanted to make sure that it didn't have anything to do with the drug. I began taking it again continuously at the end of August. It's been almost a month now of taking it on a regular basis and I really do feel like it is making my mucus thinner.

I am excited for the future of CF drugs. Vertex has two different compounds VX-770 and VX-809 and from what I have been reading - eventually they will be tested together. The two compounds together are supposed to have the best result. One is a corrector and one is a potentiator - so each compound has different effects based on your mutations and the effect it has on the CFTR protein. Research has actually shown that VX-809 has a better result in my genetic mutation (DDF508) - so I am really hoping that my CF Center will soon be testing this compound as well.

Health Renovation!

2010-09-22T18:17:00.000-07:00

First let me start out by saying that life has been CRAZY since I last posted! I am still working as a NICU nurse and absolutely loving it! I have now been at my job for 6 months! The time has been flying by. It's really amazing how you don't mind working when it's doing something that you love.

This update is basically about getting myself as healthy as I possibly can be. I know that I have said this all before but after the last few months that I have had - I am more motivated and determined than ever to NOT let CF get in the way of my everyday life.

The past few months have been spent in and out of the hospital. I was in the ICU. Had a systemic infection from another PORT infection. I had fevers up to 108! I required oxygen 24/7 for almost two months straight. My oxygen levels went down to the low 80's with even the slightlest movement. After two back to back hospitalizations, being on oxygen 24/7, missing TONS of work, six long weeks of IV antibiotics, getting a THIRD port and losing a tremendous amount of weight - I want to physically do everything in my power to never get to that point again. Granted - the infection was probably something that I couldn't have prevented - but I wasn't in the best shape physically before the infection took place, so when it hit - my body had no idea what to do. It really took a toll out on everything. When I got home from the hospital I couldn't even make it up a flight of stairs without literally pulling myself up the banister. I was so scared, I honestly felt like I was starting to die. While I was in the hospital I had set up a meeting with my doctor, my mother and my sister because I wanted to ask her point blank if she thought I was getting progressively worse. My doctor, whom I trust very much, stressed that she really didn't have all the answers, but that she really felt I was just going through a rough patch and that I would start to turn around.

It's now almost a month and a half since I was discharged from the hospital and I do believe my doctor was right. I no longer feel that I am losing control of my very existence. My PFT's are stable. My FVC on 9/14/10 was 63% and my FEV1 was 42%. In January my FEV1 was in the 60's. I KNOW that I can do better. I have been following a blog on here written by a fellow CF patient, Ronnie Sharpe. He has an amazing outlook on life and is extremely beneficial to anybody that has CF and is in a funk. His blogs, plus guest blogs that he features on his site have officially motivated me to really give my all to my health. Through exercise, many CF patients have turned their health around and increased their lung functions.

From all of the data that I have seen and written proof that exercise is the key to CF management - it's time I get serious about fitness! I have always been compliant with my medications. Unfortunately for someone with CF, that isn't always enough. I am going to start today - exercising seriously. Getting my body in the best possible shape will help me to be able to work at my job for a very, very long time. It will hopefully enable me to feel well enough to be able to realistically think about becoming a mother when the time comes. Most importantly, it will show CF who's boss!

2010-03-27T18:01:00.000-07:00

I have a job finally! My DREAM job!! I am back in nursing and working at a hospital 10 minutes from my house. I am working in the Neonatal Intensive Care Unit (NICU). I ABSOLUTELY love it!!! I can see myself in this area for the rest of my career. If my health remains stable, I am actually thinking about going back to school in a few years to become a neonatal nurse practitioner!

Since February I have been taking a new study drug, Vertex 770. This pill taken twice a day is supposed to work at the cellular level, fixing the main defect in CF - causing symptons to disappear! I'm not sure whether I am on the real thing or the placebo. A month into taking the pill I wasn't feeling any changes and actually felt quite sick. My doctor started me on another round of IV antibiotics. Since then, I have been feeling MUCH better. It could be that the Vertex just took a little longer to take effect in my system, the IVs are whats done the trick, or possibly a combination of the two things helping each other out. Either way, I hope that I stay feeling the way I am feeling now for a LONG time!

Working full time again is definitely wearing me out - but I don't mind! When you are out of work for over a year because you were so sick that you just couldn't - working again is a blessing! I am exhausteddd, especially being on IV's right now. I wake up at 4:30 every morning to make sure that I have ample time to shower and get all of my meds and therapy done. When I get home, I still have two doses of meds to go - but knowing that I LOVE where I am working makes it bearable. As tired as I am waking up at the crack of dawn, I cannot wait to get into work and take care of adorable, innocent babies. Something about seeing what they go through (even though I go through enough of my own stuff), just makes the crap I deal with on an everyday basis, seem less important and not so bad.

This year I redid my youtube video for the CF walk. I am hoping that this year is another huge success! I really feel that with all of the new drugs out on the market now for people with CF, that things are going to be okay. I can't wait to turn 26 and then have a million more birthdays after that!!

2010 = MY year

2010-01-23T15:39:00.000-08:00

So this year started out pretty good. I've had a few rough patches to get through but I am finally clear headed and know that things will work out in time. February 11th I am starting a new study drug that is actually supposed to revcrse the effects of CF at the cellular level. This is the most amazing thing that has been discovered thus far. It has already shown an average of a 10% increase in lung function and a decrease in sodium chloride level (this is what causes the mucus to get thick, sticky and cause infections). It's phase two of the study. There will be a group that gets the actual drug and a group that gets a placebo. I am PRAYING that I get the actual drug. Most studies there is a 50/50 chance of whether you will get the drug or not, this study is 4/5, so my chances are definitely better. In the meantime I am still looking for nursing jobs, I feel that it is time for me to get back into the workforce. I'm still bartending a few nights a week, but I MISS nursing so bad! I am looking to become an RN in a neonatal intensive care unit. I actually have an interview monday (so keep your fingers crossed). Monday I am also going to start scheduling in the gym into my daily planner. It's sooo hard to get myself there, but when I am there I feel good. My boyfriend has been waiting on me to get my ass in gear - so I am going to this week! I know that a consistent exercise routine will also help me feel great.

August 2008 - a glass of wine and a puppyy!!

2009-08-08T18:47:00.000-07:00

If you know me at all you'd know that I have always wanted a puppy. Well last August I happened to be living on my own (well with two roommates) and got one. Joey and I were out to dinner and I just wanted to go to a pet store. We went to one in the mall but then called a few to see if they were still open on our way home. We ended up at pet store that had small terriers, shihtzus and malteses. I actually picked up a maltest first - but she wasn't very friendly. I then locked eyes on this adorable little female shihtzu and picked her up - she did not go back down in that cage. Joey tried talking sense into me that I couldn't just get a dog like that, I had no supplies, etc., etc. He was right, I probably shouldn't have, not in that way anyway. But I am sooooo glad I did. Chloe is the most precious puppy ever and I love her to death!

A long TOUGH year ...

2009-08-08T18:00:00.000-07:00

This past year has been both the best and worst of my life thus far. So many good things have happened to me, you would think that they would outweigh the bad. Unfortunately, the good things all came flowing to me at once. The bad just kept getting thrown at me, even now, today as I sit here in the hospital writing this.

Let's start with the good. My godson was born on March 24 and became my favorite little man in the entire universe. He makes me smile and he cant even talk yet! There is just something about babies that makes everything seem okay. Then in April - in the same week I was offered my first nursing job on the spot at an interview AND my AMAZING boyfriend and I started going out. In June I graduated from nursing school and in July I passed the nursing boards on the first try!

In July my family (and boyfriend!) went to Aruba to celebrate the wedding of a family friend. It was an amazing time, just what I thought I needed before I started working in the real world. Unfortunately I got very sick while I was down there and since then nothing has been the same.

I called my doctors office from the airport in Aruba to let them know that I would definitely be needing a room at the hospital as soon as I got back to the states. Once I was out of the hospital, I started my orientation for my job as a nurse. I worked the night shift on a medical/surgical floor. Probably not the best situation or me, but as a new nurse there aren't many options. I didn't feel well, but I continued working. I did my first bout of IV antibiotics in September. I didn't stop working I just got a PICC line. One night while going over patients charts I realized my arm with the PICC line was much larger than my right arm. My SECOND blood clot. I went to the doctors the next day and the PICC line was removed. My doctor decided that since it was my second PICC induced clot that it wasn't a great idea to try anymore PICCs in it. So I fixed my schedule at work so that I would work and have eight consecutive days off to go into the hospital get a mediport placed and start IV antibiotics.

November and December came and gone. I never felt great, but I didn't feel horrible, I was able to continue to work (using quite a few sick days) despite how I felt. January came and I talked to my supervisor and let her know what was going on. She agreed that my health was the most important, so I went on a leave of absence. I was in the hospital for a month. I went back to work and was okay for a week beore getting sick again. In March I resigned from my position knowing that it was taking too much of a toll on my health.

I started a new job in the middle of March at a cosmetic dermatologist office. The workload was nothing. It was however 5 days a week, and I had to wake up early to travel into the city. But it seemed to be working. Until I woke up one morning in the worst possible pain. I went to the doctors and they sent me to the ER. I was colon was backed up, I had a kidney stone and a massive kidney infection that had seeped into my bloodstream. I was rushed into emergency surgery that same night to put a stent in my ureter to keep the stone from blocking my kidney from clearing out the infection. The doctors didnt want to take the stone out then so I went home on IVs for a month, still in tons of pain. I went back to work, but I missed a few days. A month later I went back into the hospital to get the stone removed and ended up missing more days at work. In an office situation it isn't ideal to have someone like me, although obviously these were unfortunate, unplanned for absences. I was not fired, but I resigned on my own accord.

Since then I have been job free and going back and forth between the hospital and home. I have been in the hospital every month since January. It seems like I get home for a week or two and bam I'm right back where I started. April and May were the kidney issues. June my mediport got infected and also caused a septic blood infection and had to be removed. July I had a small bowel obstruction and they stuck a nasogastric tube down my nose which was the most uncomfortable thing that has been done to me yet.

My boyfriend is amazing. Even if I was perfectly healthy I would say he is the most amazing man on earth, but being that I have so much going on and he deals with it sooooooo well - he truly is the best. He's put up with me when I'm on steroids (roid rage really exists - just ask him!), when I'm depressed, when I'm just pissed off and angry and when I'm at my best (which I feel like is a rarity these days). We've been together almost 16 months now and I couldn't be happier. I know that he is it for me and from what he tells me, he feels the same!

My sister had another baby boy just this week on August 5th at 11:12pm. Matthew John 8lbs 4oz and 20 1/2 inches! I haven't yet met him because I am stuck in here getting myself better for my other sisters wedding in two weeks! My PFTs (lung function) are the lowest they have ever been, 43%. Everyone keeps telling me that they will go up but I am definitely scared that maybe I've hit that point where CFers get an infection and just go downhill til they are on the transplant list. I don't want it to be that. But when you go from going into the hospital once or twice every twelve months to ten times in twelve months it disheartens you a little. I've started seeing a psychologist and I talk to my CF friends often. I also just started an antidepressant (my second try - the first one didn't work at all). I'm just not the same person I used to be and that bothers me more than anything in the world. I'm extremely depressed about the status of my current health. I'm saddened that I cannot work right now because I worked my ass off to get through nursing school and pass those boards. I'm mad that because I'm not working, my poor parents have to pay my bills (which is not a small feat since I was not very responsible with my credit cards when I first got them plus the brand new car and $600/month health insurance). I just feel like its my turn for something, a break, to win the lottery, to be happpy and healthy the way I used to be.

Friends and my hectic schedule

2008-01-26T14:06:00.000-08:00

I always try and keep in touch with my friends during the school semester but it gets hard. Being a nursing student is hard, being a nursing student with a lung disease is ridiculously hard. I am almost done and my friends and I have all stayed in contact but lately one friend has been saying that she feels like she tries all the time and that I do not make an effort. What everyone has to understand is that - I don't go out on the weekends, I work. During the week I go to school and am exhausted by the time I get home. I often have reading and studying to do which takes up the remainder of my night. Sometimes I just sleep because I feel like crap and sometimes sleep is the only thing that helps. On the weekends when I work - I sleep late. I literally set the alarm to give myself enough time to get up, do my therapies, eat a little something and shower for work. If I have to wake up earlier, I feel it. Once I get tired and over exert myself I get sick. The only time I usually see my friends are on Saturday nights because I bartend so they come to drink and see me. Other than that - I hardly ever see anyone. I even tried to make a girls night with Dawn and Danielle on Tuesdays just for an hour or two to watch One Tree Hill and catch up with each other, but I happened to be placed in a 12 hour clinical on Wednesday which means I have to wake up at about 4am - so obviously no more girls nights. I don't have a life right now other than school. I feel myself getting more tired and I have less energy than I'm used to having. School is over in May and then hopefully the studying is over in June/July when I take and PASS (fingers crossed) the nursing boards. Until then I really hope that my best friends and family can understand that I am not avoiding anyone, I just really need to get through school and keep myself as healthy as possibly at the same time.

Contemplating moving

2008-01-25T18:53:00.000-08:00

Since I was a little girl I always dreamed of living somewhere other than NY. Not that I don't like NY. I do, I think it's great to have a big city so close with the shopping and entertainment and restaurants and also be 30 minutes from the beach, I just don't feel like it's somewhere that I want to spend the rest of my life.
With my lung problems I get sick often. Mostly when the weather goes from one extreme to the other and especially in the freezing cold of winter. It sometimes hurts to even go outside because breathing in the cold air irritates my lungs.
Unfortunately my entire family is here in NY. I have family in other states, but the family that I care about most is right here in NY. I also have some of the best friends that I could ever ask for. I've had three friends who have been with me since I was about 4. They are the best friends anyone could ask for. Along the way I have met other people, Beth, Dawn and Danielle to name a few and then from nursing school I met Cathy who has turned out to be as close and as important to me as my friends that I grew up with. I feel like leaving this behind would just be crazy. But I also have a feeling that if I do move to a warmer climate that I will feel better.
My family thinks that I should live in NY for a year after graduation and see how I am healthwise because I won't have the stress of school on me. Stress does play a major role in when I get sick, but it is not WHAT gets me sick. Stressed or not, the winter sucks and I can't stand it. I almost feel like being a hermit from November-March when it is cold out and thats no way to live life.
My sister and brother-in-law also recently made me Godmother of their soon to be baby. I cannot explain how excited I am and I feel like leaving would be a dissapointment to them. I have to keep reminding myself that I can still visit as much as I want and keep in touch via phone and e-mails. Being there 24/7 isn't necessary part of being a Godmother.
I am going to San Diego in March for spring break (as long as I don't get sick and need IV antibiotics during that time). I really want to go and take a look around because there is a chance that I may just go and give myself a year and figure out if I am better there or here. There's parts of me that know it would be smarter to stay here another year, not to wait and see if my health changes being out of school, but more so to save money so that it would be easier if I decided to go. However there are other parts of me that are screaming from the inside telling me to just go. I'll obviously make sure I have a job before going anywhere, so money shouldn't be a HUGE problem. I will have to live paycheck to paycheck for the first few months but I think in time I'll be okay. I can also start saving some money while I'm here and working. Growing up is hard, growing up with a lung disease that does better in certain environments (not the one you currently live in) is even harder :(

My last hospitalization

2008-01-16T14:40:00.001-08:00

I usually go in the hospital twice a year for what people in the CF world call a "tune-up". This usually just consists of 10-14 days on IV antibiotics, chestPT (I often just call my treatments) three times a day by physical therapists, and REST. I can no longer get peripheral IV's - the normal IV's that last a few days that one normally gets in the hospital. I have to get PICC lines which are specialized catheters to deliver my medicine and they can stay in for a few weeks to a few months. It goes in through my upper arm and goes into my right atrium to deliver medication. This particular time, I developed a DVT (deep vein thrombosis/blood clot) in my vein. DVT's are particulary dangerous because they can dislodge and travel to vital organs (lungs among others) and cause life threatening complications. I cannot begin to explain to you what my arm looked and felt like. Everyday I noticed that my arm was swelling a little. After a few days of thinking it was nothing, after I got out of the shower one day I looked at my arm and realized it was a bluish color. I informed the nurses right away and even though it was New Years Eve, I was down having a CT-scan just a few hours later. The CT-scan confirmed that I did in fact have a DVT and it was pretty extensive. They started me on heparin (a blood thinner) to prevent anymore clots from forming. They obviously also took out the PICC line. I have been getting PICC lines for so many years that I guess I gave me veins a break and they were able to get regular IV's into my arm (one for the heparin and one for the antibiotics). Once they were sure it was a DVT a team of doctors came to see me, including my CF doctor, the vascular team and the hematologist. Since this happened in my right arm and I am a righty I opted to go for a procedure that would get rid of the blood clots. I could just be on medicine, however the meds don't necessarily make the clots that are already there dissolve, they just help from preventing more. Everytime I used my arm, even to do simple things like brush my teeth or hair my arm began to hurt and turn colors. I had a procedure that they did in the OR, they inserted a catheter into my groin and scraped out the clots, they then inserted a catheter into my arm to continously deliver thromobolytic (clot dissolving) medicine over the next 24 hours. There is a risk of bleeding, so they kept me in the surgical ICU for 24 hours while the catheter was in place. I am now on Lovenox, a daily injection that I have to give myself for three months just as precaution. My arm actually still hurts a little when I am using it a lot, but it is 99% better.

First post for my first blog ...

2008-01-16T12:59:00.000-08:00

For starters my name is Katy. I am 23 years old from Queens (Whitestone), NY. I am the youngest of five girls in my family and the only one who was born with Cystic Fibrosis (CF). CF is a huge part of my life, however it does not define who I am. If you saw me walking on the street, you probably wouldn't even suspect that I had a progressive, chronic lung disease. Living with CF has made me challenge myself in many ways and I constantly feel that I am growing intellectually and emotionally through my experiences. I recently viewed a few blogs of other CF patients and people affected by CF through being in relationships with someone that had CF and they inspired me to keep a little log, or in this case blog of my life.