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

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!!

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 ...

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

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

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

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.