Saturday, January 26, 2008

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.

Friday, January 25, 2008

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 :(

Wednesday, January 16, 2008

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.

First post for my first blog ...

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.