I am far from perfect, but everything I write is from my heart and it’s honest. I strive to be the best version of me that I can be. Even though on the outside things can look normal, it's what's behind closed doors. That's the real stuff. For a long time I would always try to smile and mask how I would feel physically and mentally. But now, I don't try to be strong for everyone else. I don't lie and put on a show to make people think I'm always doing okay. What you see is what you get. It's not for pity and it's not for attention, it's reality and it's also awareness.
I've felt almost every emotion in the book over these past two and a half (almost three) years. I've broken down, I've spent hours crying, and I've been so angry I’ve wanted to just scream at the top of my lungs. I've been anxious and nervous to the point of my brain feeling like it wanted to explode. I've been in the worst pain of my life to the point that I just wanted to slip into the deepest sleep forever so I wouldn't have to feel anything. With new situations or with unexpected scenarios brought me fear. I've been scared, SO unbelievably scared because for the longest time it was like I was physically watching myself disappear.
But lets start at the beginning. As a kid growing up, my parents strived to make my life as normal as possible. I participated in many activities and sports, and if I didn't abide by the rules, I also got in trouble like everyone else. The approach my parents took due to my situation had its advantages and disadvantages, but I believe that living a “double life” at times allowed me to learn how to understand others better by seeing and experiencing those different ways of life.
When I was around nineteen, twenty, and twenty one years old, I went through my “rebellious” stage, but thankfully I overcame that and saw what was really important. So I got my act together and from then on I took care of myself the best way I knew how. No matter what I did though, CF had its own agenda. A year later is when things became harder, and my life as I knew it was about to change big time. I was told by my medical team that due to the fact that things were becoming more difficult, and I was getting harder and harder to treat with my extremely resistant bacteria, it was time to look into transplant. Not exactly the news I wanted to hear and definitely not where I wanted to be in life at twenty four years old. I set up my appointments for transplant consultation and tried not to think too much about it.
Fast forward a few months later, things were changing and they were changing fast. I went from being able to span treatment of IV antibiotics from 8 weeks down to 4 weeks. The amount of time I would have to be on them grew longer, and treatment grew harder. The need for oxygen grew from only needing it at night to then needing it every day, all day. I couldn’t drive anymore, I felt awful 95% of the time. I coughed so much, I literally was unable to breathe at times. I remember gasping for just the slightest bit of air. An unbelievably frightening feeling. I’d cough so hard I would crack ribs which then brought on tremendous amount of pain. As time continued to go on, I was in pain constantly, all over my body from head to toe. I was on 4-5 liters of oxygen, and I could no longer do much on my own. I was now twenty five years old and everything I did was a true struggle. My husband or a family member had to be with me at all times. I needed help doing the simple things we all take for granted everyday. Getting out of bed, walking to the bathroom or the kitchen. Bathing, getting dressed, and even brushing my hair was a true challenge. Life as I knew it was no longer. I would catch quick glances of myself in the mirror and when I stopped to give a good look I saw someone I no longer recognized. I wasn’t “living” anymore, I was just simply “existing.” I was slowly dying and my only hope was new lungs.
Going through transplant consultation was quite the experience. It was a few days long and it took a toll on me mentally. My husband and I went through all the classes and appointments and it was a lot to take in. Not only were we dealing with the fact of my current health state and our lack of options, but we were trying to comprehend and take in so much information on a very important subject and decision. The most nerve racking but anticipated appointment, was my meeting with my transplant doctor. I already knew him from clinic and I knew that talking with him was going to answer a lot of questions or concerns I had about the transplant process. He was very direct and honest with myself and Seth which is something I always appreciated from my all of my doctors. After consulting with my doctor, I was told that due to my current and personal health situation, I was going to be looking at some possible complications that maybe others without my particular issues, wouldn’t have to necessarily face. My success rate after the first year of transplant, was about 25% less then other CF patients that weren’t dealing with my particular problem. After the second year, I was looking at a 50/50 shot. My heart sank and I felt like I was a balloon slowly deflating. Not only was I already struggling with the complications of end stage Cystic Fibrosis, I was now being told that my only shot at possible life again was “a roll of the dice.” Unknown, and impossible to predict.