No Port. For Now.

Sorry it's been so long since my update!!!!

      Nothing interesting has really happened over the last few weeks. 

So to catch ever one up I did NOT get my port, 

which I'm kind of glad about. 

I ended up going all the way up to Miami for nothing. 

So let me tell you all how that went over..

      So I've been on IV antibiotics for 4 or 5 months now (I honestly can't remember how long it has been).  So when I first started these IVs the doctor said I would be on them for a month. A month goes by and then the doctor explains that the medicine is working so well that he want me on it for another month or two. Well I was glad that the medicine was working, but also bummed because this would mean even more time to wait to go out in the boat and go diving. But I sucked it up and told him I would do ONE more month to get my health back up. 

       So the next month passes and I go back in for my check up. All excited I think I'm finally going to get this PICC removed. Wrong again. Doctor begins to explain that the infection I have in my lungs is one of the hardest to get rid of (the name of it is MAC) and it needs long doses of antibiotics. If we stop now there is a huge chance that it was going to come back fast and be just as bad as before my treatment. So I unwillingly said fine, I'll do another month. 

        My next check up comes and I get this asshole of a doctor (he fills in for my regular doctor). So then I asked him when I was getting my PICC taken out and he looks at me like I'm crazy. I told him my doctor said one more month and I was done. He quickly corrected me with: "No, no, no. With this infection you need AT LEAST 6 months. Sometimes it can even go up to 24 months long." lbgr^w$yg%g&ctn!!!?!!?!!?? 6 to 24 months!?!? Then he continues "Yea, you should probably start thinking about getting a port too." So I'm completely upset by all this news. He keeps asking if I want a port so I can go swimming and do what ever I want since it's going to be so long. So I ask him if I could think about it. I felt like he was pushing it on me. I never even thought about getting a port or was even asked by a doctor. So I said I will think about it and tell him on my next appointment. 

         My next appointment comes and I have made my decision. I'm going to get the port. I mean I'm going to need one eventually anyways, all CFers end up getting them as they deteriorate. So he's like "okay, if that's what you want to do.. I mean if it was me, I won't do it". WTF!?!? You don't talk your patient into getting it and then when they finally feel good about their decision go back! But I was like what ever, I already talked to a bunch of CFers and they said it was the best decision they have ever made. So I was completely okay with it. We made the appointment in a week and I went back home.

         Even though I heard so many great things from people about the port I was still very nervous to get it. The day finally came and we drove 3 hours to the hospital that was doing the procedure. When I got there I signed all the paper work down stairs and they took me right up to a room. The nurse went to give me the last few sheets to fill out when another nurse walked in and said "Don't make her sign those yet, the doctor wants to speak with her first." As if my nerves weren't bad enough!!! So the doctor walks in and bluntly says "I'm going to try to talk you out of this, just give me 10 minutes." So he went on and on about how I'm not ready to get a port and I should wait until I "need" one not "want" one. Oh and that he already contacted my doctor and he thinks that I shouldn't get one either. So being scared already, it didn't take much to talk me out of getting the port. We grabbed my things and left the hospital just as quickly as we got in. Why couldn't this guy just call me over the phone and tell me all this instead of making me drive 3 hours out of my way?? 

     

        So that's how my life has been going. And that's not mentioning all the other things that have been going wrong, like my grandpa's house burnt down and he's been living with me and my mom for a few months now. I've been having to watch him and he barely can walk from point A to point B. Or that my boyfriend and I just broke up a couple of months ago. We were together for 4 1/2 years. But it's just one thing after another. I'm just trying to focus on my health for now. All the other things will just sort themselves out, or so I hope.

When It Rains, It Pours

Well hurricane Isaac is in full effect!!!

No better time to continue my story!

     So after getting out of the hospital for my first tune up, I went home and and continued treatment. It was the end of June when I noticed a big change in my health. Something wasn't right and I started going down hill fast. My boyfriend at the time was leaving for the military and I was completely upset over it. So I just assumed that the reason I was getting sick was because I was so upset and sad about him leaving.

     As the days got closer to him leaving for basic training, I got worse and worse. It was to the point where I threw up every few hours and started getting dizzy. The day finally came to say good bye. We dropped him off at the airport and started the long drive back home. The 3 hours felt like a full day. On the way back I was so exhausted I couldn't even sit up, I laid there with my eyes close feeling like I was going to die. I couldn't eat, my stomach had a horrible squeezing pain that took my breath away. When I finally got home my mom could see how bad I felt she asked if I was okay and if I wanted to go to the ER. That night I woke up every hour feeling so dizzy that I would stubble to the bathroom and throw up. After throwing up I just passed out on the bathroom floor. As the hours went by it got worse. My mom finally had enough and packed a weeks worth of clothes and helped me into the car. Like I said before, we didn't have the best hospital, in fact they know little to nothing about CF. So we rushed to Miami Children's Hospital once again.

From the ER they started an IV, did blood work, and got me into a room. 

By the end of the night they noticed that my skin started turning yellow. 

They rushed me in to ICU 

were I spent the next 11 days.

The last couple of days in ICU

    While I was in ICU I got around 5 IVs, 2 tubes of platelets, 3 bags of blood, and was on dialysis. After running more test they found out that I had pancreatitis and I let it get so far that I was going into renal failure and all my organs were starting to shut down. I don't remember much, the first couple days I was out of it and sleeping most of the time. I remember waking up to my mom sitting in the same tiny chair day after day. I would just lay there listening to her mumble her prayers on my bed side. I went 2 weeks with out eating and lost 14lb. I didn't really notice how bad I was until the day I tried to stand up. I just sat at the edge of my bed, put my feet on the ground, stood up, and took one step. I started feeling dizzy, so leaned against the bed and told my mom to call the doctor. Then I blacked out and couldn't feel anything. I heard the terror in my mom's voice as she was yelling for help. I kept telling her I was okay, but she said "No! You're having a seizure!". Then everything sounded like it was in a tunnel, I told the doctor that I couldn't see him but I could hear him. So after that, the doctor told me that my body has been though too much and I wasn't okay enough to do anything. That's when it hit me.. I couldn't even walk. Was I really that bad??

The first day home from ICU

Finally got home after 15 days in the hospital. 

One of the best feelings in the world! 

To finally be able to eat normal food and just sleep in your own bed!

The yellow & black pills are what cause pancreatitis, Tetracycline

Daily Update: 

Haven't been feeling so good lately. I've noticed I've been coughing a lot more. I just hope these antibiotics are still doing their job. On Friday I get my port placed. Kind of nervous about that still. But I will finally be getting this PICC line taken out which I am more than happy about! Considering that it's been hurting for the last couple of days. I am going to video the before and after of my port for my next post. So wish me luck!!!

Turn For The Worse

So before I continue my story,

I just wanted to thank you EVERYONE who started reading my blog!!!!

It honestly means so much to me =). A lot of you said that I left you hanging and wanted 

to know more, well I will be updating my blog every week.
So stay updated!!!!

<3

So lets jump ahead to senior year.... 

      I was 18 years old and having the time of my life. Everything was perfect. A month before graduation, I went up for a doctors visit because I noticed that I was coughing a lot and couldn't sleep through the night anymore. When we went up to Miami Children's Hospital my doctors noticed that my PFTs (pulmonary function test) dropped from the 100s to the 80s. They told me I needed to be admitted and I was devastated. I begged them to hold off until after graduation. They finally agreed and set the date for the day after graduation. But in the mean time, they put me on antibiotics and told me I had to stay out of school for a whole week. So I had to email all my teachers and go to the school to grab a weeks worth of work for all 6 classes. It was right at the end of the year and I always did okay in school but after missing a week of school I thought that I might not even graduate.

1st time being hospitalized 6/9/07

     So after working my ass off in school to keep up with everyone else, I finally graduated. The next day, I packed my stuff and drove 3 hours to the hospital. I wasn't really upset, I was actually kind of excited. I have never been for a "tune up". A tune up is when you get admitted into the hospital get your health back up to "normal". It usually last about 2 weeks and you get a PICC line and antibiotics to help get you back on track. So the first couple of days weren't so bad. It's not until about day 5 or 6 that I even thought about wanting to go home. But after that thought came in my head, it got worse and worse. So finally after begging and crying to go back home because I was missing all my friends and "real" food. The doctors were not happy but they agreed to let me go. They put me on 2 antibiotics and sent me home.

Little did I know I would be back in less then a month with even more problems...

My first PICC line

A PICC line is like an IV. 

It's a long, thin catheter that is inserted into the vein, 

usually starts from the upper arm and ends near the heart. 

Used mostly for long IV antibiotics. 

Cystic Fibrosis?

      I've been thinking about writing of this blog so many times the last past few days BUUTTTT....  I knew I would have to do this one next so I was kind of avoiding it. Not because I don't like to talk about what Cystic Fibrosis is, but because it's so complex. It's not the same for everyone who has it. So I guess I'll begin with what it is and then on how it affects me.

Cystic Fibrosis is a life threatening genetic disease that causes 

thick sticky mucus to build up in the lungs and pancreas. 

THERE IS NO CURE

 The average lifespan is 

37 years old.

About 30,000 people in the US have Cystic Fibrosis.

1 in every 31 Americans are carriers of the defective gene.

With CF some cases are worse than other. Some people can go years with out ever being hospitalized, while others are in and out of the hospitals every month.

Me, when I was little

Lets start with when I was diagnosed...

     I was diagnosed with CF at 6 months old. My mother noticed that I was getting sick and something just wasn't right. My parents took me to the emergency room where they did a bunch of test. They found that my electrolytes were the lowest that they have ever seen on a living person and decided that I needed to be flown out ASAP. (Let me say here that our hospital was not the best, not even close. I live in the Florida Keys, which is over 100 miles to "actual" hospital.) But that was where things were complicated.. to be flown out you need to have a credit card to put down for the transportation and my parents did not have one at the time. My doctor knew that this was a matter of life and death, reached into his own pocket and put his credit card down for the flight. It still brings tears to my eyes this day, thinking about how caring some people are. He literally saved my life that day.

         They flew me out to Miami Children's Hospital, one of the best children's hospital in the US. There they did even more test while I was in ICU. After a few more test over a couple days, they finally tried a sweat test and that's when my parents life was flipped upside down. The doctors told them that I had Cystic Fibrosis. I can't imagine what my parents felt when they heard those words and found out what it really was. At that time the life expectancy was 18 years old. I'd be lucky to make it out of high school. 

       But thing's were not as bad as they though. I got better and live a normal life, going to school, playing with friends. It was almost like I didn't even have CF. I took pills before meals and did a treatment at night, but other than that everything was perfect. Some times I even wondered if the test was wrong, maybe I didn't have CF and I didn't have to do treatments. Even when I would spend the night at a friends house and skip out on treatments I didn't feel any different. Maybe it was all just a mistake and it was someone else's results? I didn't ever feel bad, short of breath, or never coughed like they said I should. I never told anyone about my CF, I don't know if it was because my family never talked about it or if it was because I actually didn't believe it. But soon that would all change, I would believe, and things would get worse...

Hello Blog World

My name is Stephanie. I am 23 years old and live in the Florida Keys. 

I enjoy photography and writing. I want to eventually write my own book, so I thought I would start off with a blog. I have a lot to talk about, from long cold hospital visits to going out in the boat breathing in the salty air. 

So for those who want to know a little more about me or just to keep 

up on my life, this is were everything will be. My heart will be poured into this, the good and bad will be revealed. There will be a lot about Cystic Fibrosis, which is a disease that I have. But there will also be a lot about just me and my life.