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.