Hello World
Hello, my name is Elizabeth and I have Cystic Fibrosis (CF). CF is a genetic lung disease that causes the mucus that lines the lungs to become very thick and sticky so it traps in bacteria that cause infections, and basically drowns you very slowly. If you’re reading this you have obviously stumbled upon my website. The reason I have this website is so I can share my experience as a CF patient through social media. I want to spread awareness. ...
Turn for the Worst
Well things have taken a drastic turn lately. A turn for the worst you could say. I was doing swimmingly for a couple of months there and now I am in the hospital... I made a couple poor decisions, as we all do, but they did not CAUSE my downfall. They sure as hell didn't help, and might have made it slightly worse, but did NOT cause it. I know what you're thinking, "what were your poor decisions?" and/or "what exactly a turn for the worst?" ...
Thoughts Before Transplant
What exactly is the concept of being sick? Is being ill the same as having an illness? Why? Why anything? Why is there anything? Why is there life, love, hate, death? What’s the point? Why can’t it just end? These are all questions that I asked myself when I was preparing myself for what was a grueling workout for myself pre-transplant. For example, getting from my car to the front door… Getting on top of and down from my slightly too ...
Meaningfulness
All my life I have wanted to do something that means something. I always have had this thought in the back of my mind that I will be gone off of this Earth a little too early for my taste. But I guess that’s the same with anyone. I have always wanted to be remembered after I die, not just as Liz, but the girl Liz who did something wonderful and amazing that inspired many… I guess that’s why I started this whole thing, but the truth is I ...
I’m back!
Well hello everyone, I know I haven't put anything out there in a while, but I am back. I'm sorry guys, I have been so busy now that I am finally home! Yep, that's right, I'm not at RMH anymore! :) Okay, so first of all I have a job now! I am a secretary in a yoga studio, inputing data and client information into a database. I also just graduated high school and am trying to figure out what to do with my life. As of now, I have no freakin' ...
Cystic Fibrosis Awareness Month: Macaela
Well hello everyone! May is an especially special month for me a some of my friends because it is CF Awareness Month! In honor of CF patients around the world, I had some CF patients I know write their story for me. This specific post will be about my friend Macaela. She is from California and lives in North Carolina. I wish her luck in everything she does, and wish that all of you can share her story with the people you care about. ...
RMH (Ronald McDonald House)
So as most of you know I have been staying at the Stanford/Lucille Packard Ronald McDonald House in Palo Alto. It's a community living setting, and things are very different. In the beginning I wasn't too sure about it, and I was very busy with meds/appointments and watching TV. Haha, and a bit of homework. We had a lot of drama here... It's like high school, but it's fun. Some of the moms here are really fun to hang out with, they are all ...
I See Things Differently
Before I got my transplant, I would walk down the street and see people smoking a cig. Usually it didn't really bother me besides the fact that it was making me cough. If you wanna smoke, smoke, it's your right. But now, when I people smoking it makes me sad, and angry. Not only are they damaging themselves, but what if they got in an accident and go brain dead, they are ruining the chance to donotate those lungs and save a life. All I can ...
Life After Transplant, So Far
Hello everybody. I know it's been a while, but I have had to do a lot of healing and having family time lately. A lot has happened since I last blogged about my experiences. Lets see... I got my transplant, and then I told you all about it. But what I didn't really talk about was when I went to see my lungs in person afterwards. I got to hold them, poke them, squeeze them, scold them, thank them and then say goodbye to them. They fought a good ...
Unusual Stress?
So the peat couple of months have been very stressful, but especially theses past two weeks. It's supposed to be the happiest thing to ever happen to me (transplant), but I can't help feeling not happy. I feel guilty, and saddened for the donor who died and gave me their lungs. Not only did my whole life change from dying to nearly normal, but also to legal adult all at the same time. I had so many papers to sign, and all of these adult things ...
Hospital Chronicles: 6
So this has got to be the most eventful HC ever. As you all know I got transplanted AND I turned 18. So I won't really go into detail about that too much. Here's the situation. POST OP DAY1: Sedated, get breathing tube out DAY2: Sedated, two chest tubes out DAY3: Coming off of sedation, standing, eating...becoming a person again DAY4: Catheter out, dancing, got my hair brushed and braided, eating normal food, they take the ...