cant wait until summer

This summer, in June, my family and I are going to be going on yet another cruise! I am so excited they are always the highlight of the summer. On top of that I always seem to feel a lot better in the spring/summer time, then fall and winter. Maybe that is because i do not really like cold weather anyway, ( it makes me cough) One thing that will be happening for the 3rd time is going back to the Texas Children's for another "follow up". I always get so nervous around the time i have to go back in. Just another step closer to a transplant in my mind. If i could change anything about me though, i am not sure i would completely "change" or get rid of my CF. In some ways it makes me who I am. My scars, i wouldn't take away, i would leave my "port" and possibly my tube. (idk about that one though)! Something i would change? being able to breathe full, big breaths just like everyone else! No coughing, no trying to catch my breath. Just breathe. Sadly, I know this will not fully happen until I do get a new set of lungs. I hope more than anything I can hold on to the set God gave me for at least 2 more years! Anyway, back to the vacation;) This ship goes to Atlantis, which is on my top 2 FAVORITE ports to go on a cruise. Not only do they have a beautiful water park and hotel, but the shopping is like heaven. A candy store, Starbucks, and Jomba Juice line the outside area right next to privately docked yachts, which are not to bad to look at i must say:) It also goes to ST. marrtan and ST. thomas. who doesn't love the U.S virgin islands? The water is completely see threw, and the sand looks like its sugar, such a beautiful island. Lastly, the Allure( the cruise ship i am going on) its the biggest cruise ship ever made to date. It looks just like it's sister ship the Oasis, but like 5 feet bigger. Some of my favorite memories are on our cruises over the past 5 years. You get to see so many new things, and meet new people. I honestly can't wait until this year!

one breath at a time.

This year Christmas went well i am now more officially starting homeschooling, which is a lot more convenient than regular High school. Everyone else is going back to school tomorrow but as for me i will be at home doing online school with maybe a Starbucks on the nightstand. After the holidays are over i am always so ready for the hot weather again. Not only is it easier on my lungs but its my birthday in march, and its so much quicker to put on a tee shirt and shorts:) Because my 17th birthday is soon-ish, i want to go on another cruise. This would be our 5th i think, anyway, i honestly do not know when i will need new lungs so better get as much fun smashed into one spring break and summer as i can. I have a bad feeling this summer will be my last "pre transplant" summer. In a way i am very happy, it gives me a good outlook knowing i will feel better and do things i have never been able to do before. Or that i have done but in the past year have not been able to well. I am not really sure the last time i could walk up or down the stairs in my house and not get winded like i have been running 5 miles. It seems like people who get transplants their lives are divided or referred to as " pre transplant" and "post transplant" i am sure i will do the same because your life changes so much, as well as the way you feel.Yes i know getting these prized new lungs will not be fun or easy. It will be the hardest thing i have and will ever have to do in my life i am sure. But the outcome is so worth it at this point... i remember when i was about 11 or 12 and my doctor just said the word "transplant" and i cried. That young i could never imagine that i would need one, or in that case get bad enough to need one. Looking back that was only about 5 years ago and im telling myself it needs to hurry. Living like this is on the edge of horrible. Amazingly the amount of air you take in effects EVERYTHING about your life. I see the effects every day: more treatments, more coughing. more hospital stays. more "attacks". more sitting in bed. no more going to the mall or anywhere that requires me to walk for more than around 5 or so minutes at a time. This life is like being trapped on my own body, i hate my body now and how much it hurts me to see myself in this downward path getting harder to "live" each day. My mom sometimes sees it as "being lazy". The sad thin is, its just i CAN'T anymore, my mom has never seen me this bad..or like this. She almost cant deal with the fact that i am not "lazy" its that my body really cant do the same things its been doing for almost 17 years. My mom also has it in her head that if i do a lot of running or exercise that this "stage" will go away. That is not going to happen but i keep telling myself one day it will.

i guess im going to the hospital?

I haven't been to the hospital in so long..sadly it really hasn't been but now as i get older i tend to go more frequently. Any way this time around i will probably stay around 3 weeks. Which tops my usual 2 weeks, but it just depends. At the moment my mom is getting ready to access my port! hopefully it works(keep your fingers crossed.) Now when i go to the hospital is doesn't really bug me. The scans, blood work, ivs, and treatments around the clock have just became a part of my life for the past 16 and a half years. So many good and bad memories have been made in hospitals. Yes some good can come out of it. At the old hospital i was born in i would go until i was 14 ish. It was plastered with my art work. Something on basically every floor. My baby foot print is in the lobby,with framed water colors and ceiling tiles here and there. All the nurses knew me by name, and most of them actually have known me since birth and took care of me in the NICU. So changing hospitals was a big thing, but now i don't really care because its the same(minus the art work) lol. Yes, it gets very boring most of the time, but my mom stays with me, so we have time to talk and stuff.. especially when the room is a 2 by 2. Another thing that will be different is that i will have this to keep you updated:) we just accessed my port. it flushes but wont draw back(because we haven't used it in a while.) so mom put some hep in it.
anyways, i will put up another post when i get to the Santa Rosa in the morning
Love, Faith

i hate being sick all the time

Since i was little, i would only go to the hospital about once a year and get a "tune up" as my parents would call it. Most of the time it didn't take up any school and i could still have a simi normal school life, only missing every now and then for cf sickness.Before ivs could be more portable i had to take a massive iv pump in a bag to school for a couple weeks when home iv's had to be done at school. I was only in 3rd grade so it was not a big deal. Everyone knew me basically my whole school career as "the girl who is always sick,absent,or late." I was late almost every day because of morning meds and treatments. I didn't know that those days were in reality a lot easier then. Now If I'm sick its for about a week or more at a time. Therefore, i miss that much of school and it is very hard to catch up. Also Hospital stays are more frequent, and longer. Because Junior year is supposed to be extra hard it is not going to be easy to miss that much school. Since school started this year i have already missed 5 days. I'm just worried that because I'm getting sick i need to go once again back to the hospital, but i cant afford to miss a month of school. (the amount I'm guessing i will be staying this time..ugh) with my luck my PFT'S will be like in the 20's. When I'm relatively "healthy" I'm in the low/mid 40's.(just so u know where i am at) I'm thinking for the rest of this year i should be home schooled. Never in my life have i been. My parents wanted me to live a normal life as much as possible. But when stuff gets bad i guess they might consider it. It is so hard to play catch up in school every time i miss. And i haven't been to the doctor in a while(UGGH dreading that) so i will most likely get shipped of to Houston for a 2nd go at an evaluation for my lung transplant.joy.........

My Story

On March 13th 1994, I was born 2 months premature. My mother had gone into premature labor at about 20 weeks of pregnancy and had been on bed rest. Not able to stop the contractions, the doctors had no choice but to deliver me. I was born very small and not breathing. And something else was very wrong, my stomach was black and blue and so swollen that it looked like it was about to rupture. I had a meconium ileus, where your intestines rupture because the meconium is so thick it can not pass through the intestines, which is a sign of Cystic Fibrosis. At only 3 pounds 15 ounces, I was quite tiny. The doctors rushed me out of the delivery room to get me breathing and for emergency surgery. At first, they did not know what was wrong with me. They could see a large mass on the ultrasound and could only see one kidney. They told my parents that they would need to do exploratory surgery. My parents held my tiny hand and named me Faith before the doctors took me back for the "unknown" surgery. That is when they discovered the ruptured bowel. It was so gangrene, that they had to remove 75% of my small intestines. Although the doctors immediately suspected Cystic Fibrosis, it was four long and agonizing weeks before my parents were told that the tests had come back positive. The doctors told my parents I would not survive the first night, then they said I would never be able to sustain life because of my short bowel. Despite all the negative things that the doctors told my parents, my parents were determined that I was going to live and just kept turning to the Lord for healing and strength. I was in and out of the hospital a lot during the first few years of life. The first few years included TPN, which is nutrition through an iv because I couldn’t eat enough and didn’t absorb anything. It also included oxygen, medications, breathing treatments, and i.v. medications, and then a feeding tube was placed in my stomach to help me gain weight. I still have my feeding tube which I use for my nightly drip feedings. This is a routine thing in my life: treatments, drip feedings, medications, and hospitals. As a child, after being on TPN, it caused me to go into liver failure and need a transplant. I was going to be put on the transplant list and once again my parents were told I was too weak to live while waiting for one… but once again God answered my parent's prayers and my liver started working. I have not needed a liver to this day. The main thing as you might know with C.F. is that the lungs get full of thick mucus and it makes them susceptible to infections. I have had lots of infections and that’s mostly the reason for my hospital stays. I have a portacatheder, so I can get my I.V. antibiotics to help fight the infections. My main enemy ...pseudomonas aeruginosa which is a bacteria that I have fought my whole life. One time I had a micro bacterium that made me really sick! I never want to get that again. So, 16 years of fighting my pseudomonas has made my lungs weak and hard to breath. Sometime soon, I might be going through what a lot of C.F. patients do, a double lung transplant. It is not an easy decision or an easy procedure. Every day, I have numerous breathing treatments, a drip feeding of formula at night so that I can sustain my weight and tons of medications every day and night. There is always something there to remind me of my C.F. But besides all of that, one thing that I think makes me special is my scars. No, they are not pretty, but they remind me every day that I am strong. I have numerous scars from catheders and liver biopsies and surgeries. My main scar is on my stomach from the bowel resection at birth. It runs all the way across my stomach from left to right and then I have another scar that runs through that up and down from my tube placement. So it makes a cross on my tummy. That reminds me that I am still here because of Jesus. I know that for sure! Every breath for me is a miracle and my family and I pray that my lungs stay strong and I can stay healthy! And this is my C.F. story...