Real 65 : Dana's Dream Part I

Real 65 is a segment of Breathe 3-65 that is dedicated to entries and interviews sharing honest and personal experiences of living with, treating, and loving someone with Cystic Fibrosis. 
It is a place for all those impacted to share their stories. 

 

Today's Real 65 is a great honor to share with all of you. Dana's passion for life is infectious. It is such gift to have her share her journey of CF with all of us and invite us to walk along side her as she relates her own life to every one of ours. Life with CF is not fair but it still can be incredibly beautiful - Dana's journey is a perfect example of that.
 

“The faster we live, the less emotion is left in the world. The slower we live, the deeper we feel the world around us.”

"As a society we all have something in common.  Although we are all very different, there is one thing that connects us all and that is emotion.  Everyone has their bad days struggling to find the happiness in those moments.  I believe that it's okay to feel sad or angry.  Or maybe you are nervous, anxious, or frustrated.  I believe that all these emotions are important to feel and important to acknowledge.  Having one emotion consume your life while it’s pushing away the others usually ends in ourselves feeling like we are about to explode, or that we are carrying a significant amount of weight on our shoulders. I believe that particular statement even goes for such an emotion as happiness. Sharing and feeling all types of emotions are healthy for the human body and brain. Our multiple emotions is what makes us who we are. It shows us that we are alive. Experience and life itself gives us emotion, therefore molding us into who we are supposed to be.  So as you embark on this journey with me, I would like to welcome you to my emotional roller coaster. 


I was diagnosed with Cystic Fibrosis at three months old.  My parents were twenty two years old and I was their first born.  Talk about an overwhelming amount of news.  The medical staff of doctors and nurses told my parents that it would be very unlikely for me to make it to my eighteenth birthday.  Well here I am today, very proud to say that I am twenty seven years old and have accomplished so much in my life.  My story has been far from boring and although difficult and debilitating situations arose many times, somehow I wouldn’t go back and change any of it even if I could.  I believe that CF; no matter how much physical/emotional stress and torture I have been through, it has somehow helped me become the person I am today.  That I am very proud of.

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.

After the transplant consultation I not only had a lot to think about, but a huge decision to make.  Some of you may be curious as to why I would have to even think about whether I would want to proceed with getting a transplant.  I’m sure most of you would think that it should be a no brainer, being that receiving a transplant was the only shot at my life being saved.  I find that the most common misconception with transplant is the fact that many think it is a cure.  Unfortunately, this is not the case.  Receiving a transplant is without a doubt a wonderful gift, but going through end stage CF and transitioning into transplant is ultimately trading one set of problems for another (as the docs would say).  And when CF reaches its end point, your options are next to none.  It becomes hard for people that are not in this situation to fully understand the emotion and thought that goes into this.  During consultation they suggest that when taking the time to make this decision, that it is something that you are sure about.  Going through a double lung transplant is no walk in the park, and you have to be in the right mindset to take on such a life-changing procedure and event.  Before I went through this process I found myself asking the same questions that you may be.  “Why wouldn't someone choose transplant?”  Because when you get to the point of having to either accept or refuse transplant, your only other option is letting the disease take your life.  It wasn’t until I was sick and dying, that I found the answer to that question.  Cystic Fibrosis is what I sometimes like to call the “invisible disease.”  Most of the time we look, talk, and do things like everyone else.  But on the inside our body is struggling every second of every day to just do the simple things.  Then when severe times strike, we struggle to just exist.  Our life becomes unpredictable and eventually impossible to control.  But every day we fight for our life, because it’s just what we do.  It is all we know.  So to answer the question, I believe that some of us do not choose the transplant route because some of us have simply had enough.  Some of us become too tired and beaten down after all that we have been through.  Others find it easier to get back up after being knocked down multiple times, and then some just struggle more.  So I always say that everyone has a different amount of fight in them.  It doesn’t mean or come down to the fact that certain patients dealing with CF are better or stronger then others, I believe that it just means whatever our individual experiences have entailed, we either feel that we have reached our end point or we believe there is more out there for us.


When it was my turn to make my decision, I had wonderful support from my husband and family members.  They told me that whatever decision I chose they would support me.  I didn’t feel pressured into picking one choice over the other because I knew that they knew that this was something I had to decide for myself whether they agreed or not.  When I talk to people about this particular time in my life I always say that it was the most difficult, yet simplest choice I have ever made.  Confusing way to put it, I know.  I was twenty five years old and for as long as I could remember I have always let CF be apart of my life, not something that ruled my life or defined me.  I was never told that I wasn’t good enough or that I couldn’t do something.  I was always told to follow my dreams, and never let CF take those things away from me.  I was born a fighter.  I have never backed down and after everything I had been through and overcome up until that point, I realized that there was never a choice or decision for me to make.  It was just a realization.  The realization that this was in fact my path and just another chapter in my storybook.  Yes the odds were not quite in my favor and I had no idea what I was really getting myself into, but it was in fact MY only option.  My only option at a chance to live and breathe free."

Please join us next week for part II of Real 65 :  Dana's Dream.  

 

 

 -  About Today's Contributor  -

My name is Dana and I am 27 years old. I was born in Philadelphia Pennsylvania, but now live with my amazing husband in beautiful Central PA. 

I am a licensed Cosmetologist which has always been my dream job!  I professionally worked in a salon for many years until my health no longer allowed me to. Now, I do my work for just family members and close friends. I am also a dance instructor. I danced for 15 years as a child, and now have the incredible opportunity to be back as a teacher in the world of dance! Some of my favorite things to do are, watch movies, read, dance, and spend as much time as I can with the people I love! Writing has always been something I have also loved to do and with all my experiences with CF and now transplant, I love sharing my stories with others, in hopes that I can provide hope for others! We need a cure!

You can continue to follow my journey through Facebook by typing in "Dana's Dream Team" which is available for the public to see! I am always so grateful for the continuous love and support! XOXO

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.