Real 65 : Dana's Dream Part II

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. 

Last week, Dana shared part I of her powerful story and the heartbreaking realities she faced. Her words embody the very definition of what it means to be courageous, inspirational, and tenacious. Please take a moment and read Part II of Dana's Dream and let her story inspire your day. 

Dana's Dream Part II

"So I took that leap of faith and in March 2015, I was officially placed on the list and considered active.  I had already been in the hospital since January at that point and I was struggling more than ever.  My body was physically giving up.  My energy was at its ultimate low and whatever energy I did have I used to just keep my body going long enough to hopefully receive new lungs in time.  Being placed on the transplant list was really hard on me mentally.  In fact, just being in the position of a life or death situation was taking its toll.  I had never felt more terrified in my life. There was so much I didn’t know and nothing has ever scared me more than the unknown.  I lived every day wondering whether I would get the call, or whether my life was truly ending.  I spent many of my days crying because I didn’t know how else to deal with it.  My husband stopped working and stayed by my side in the hospital my entire admission.  At home our friends and family members were working hard at creating and putting together fundraisers for future transplant expenses.  I was hospitalized from January 2015 until May 2015.  My hospital room became my own little apartment I decorated and made feel as “home-y” as possible.  The hospital cleaning staff, the dietary staff, and even the transport staff grew to know more then just my name and birthdate.  And of course the doctors, aides, respiratory therapists, and nurses not only became my friends, they became my family.  It was my home away from home. 

In May 2015, after months of many different treatments, there was nothing more that could be done.  I wasn’t getting better, but there was nothing else to do except wait.  Wait for my life saving call.  At this time I was in fact to ill to travel back home, which was four hours away from my hospital, so my husband found an apartment for us to live in, within one weeks time.  I wasn't going home and truth be told I didn’t know if I would ever make it back.

Within two weeks of being discharged from the hospital I was admitted once again.  I knew at this point that this was it.  That I was now so sick that I was either going to be in the hospital until I received my new lungs or I was going to spend my last days there.  It was June 2nd, and I was getting my Chest PT at the time and as I was chatting with my respiratory therapist when I had this weird feeling.  I didn’t put much thought into it until after my PT was finished.  I was sitting in my hospital bed and I looked at my husband and told him that I had a feeling I was going to get a call really soon.  It was such a strong feeling I was scared just talking about it.  Sure enough, the next day on June 3rd, I was told there were a potential set of lungs.  After many phone calls, orders, tests, consents, and a transfer to the main hospital, late that night I was told that my surgery was in fact “a go.”  For months I had this unbelievable fear that I couldn’t shake and right before I found out the lungs were mine, every worry I ever had was gone. It was the craziest, yet most comforting feeling.  I did not know how surgery would go or what path I was headed down, but I chose to have hope and faith.  As I was saying my goodbyes to my husband and family, I was about to be rolled into the operating room and I told them one last thing, “I got this.”  That was the first time in a long time where I truly believed those three words I spoke.  I was rolled into a huge bright white room with several people already setting things up.  I was then transferred from the bed I was in to the surgical table.  I stared up at the white ceiling, surprisingly not anxious, only slightly nervous, but mostly calm.  After I was all prepped and set up, I closed my eyes and prayed.  Praying was nothing new to me, but this was a prayer like I've never said before.  Short, sweet, and to the point. 

In that moment I was finally at peace with whatever may happen, trusting that what I was facing was bigger then me.  I lived my life the best way I knew how for twenty five years. I laughed until my cheeks and tummy hurt, and was given the opportunity to not only love so many people, but to be loved, truly and deeply.  So before I knew it, I heard, "Alright Dana, we are going to take real good care of you, no worries.”  Placing a mask over my nose and mouth, I was inhaling as slowly and deeply as I could, dreaming of the moment that those deep breaths would be effortless.

June 4th 2015.  That was the day that by the grace of God, my life was saved.  A young girl changed my life in the biggest way and I am so grateful for her everyday of my life.  She is my hero and my angel, and I take her with me in all my adventures through my new life. 

My second chance at life has brought me a lot of different emotions.  Some of these feelings I know well and others, I had never felt before.  As time continued on with days and months passing, I saw changes.  Receiving a double lung transplant was an amazing gift, but by far the hardest thing I have ever had to do in my entire life.  It changed a lot of things in me, physically, mentally, and emotionally. I can now understand majority of what I am feeling, but every once in a while some new ones pop up. (Part of the rollercoaster I guess). I went into surgery as one sick young woman who had been suffering and slowing dying. I came out of surgery with not only new lungs but as a new person with a new perspective on life. I was alive and that's when I started truly “living” again.

Today I am speaking to you as a twenty seven year old woman who is proud to say that I am almost sixteen months post double lung transplant!  It has not always been easy.  The doctors had said that there would be problems, just a different set of them.  Since I was transplanted I have dealt with moderate rejection, severe and debilitating allergic reactions, pancreatitis, and severe kidney disease.  But since I was transplanted I have also been able to put away my nebulizer, return my vest, walk, run, dance, and my personal favorite BREATHE! These beautiful lungs I have received have given me sixteen extra months with my husband, family, and friends. There is so much love, and so much laughter, and I have never felt more alive in my entire life.   

So although I have been given new lungs, my time with them is unknown, and I can only hope and pray for the good path.  I want to show people that CF is the real deal. So the only way for me to do that is share my story with the world in hopes that I can help at least one person. Then with continued awareness comes fundraisers and donations to the CF foundation in hopes to one day find a cure. I want to hopefully also show people that there is always going to be "something" in life. With everyone, not just me. It's all in how we handle it. That's when your "true you" comes out. It's okay to be mad or sad, nervous or worried because eventually all those things will lead us back to happiness as long as we let it.

Transplant is no cure for CF, but it buys you more time to be on earth with the people you love and the things you love to do. You can have the chance to go places you've never been, volunteer at a organization, help an elderly man or woman to their car, show random acts of kindness.  Stare at the bright blue sky and watch as birds fly together in the air.  Enjoy watching the leaves on the trees fall softly to the ground, and close your eyes to feel the cool wind and the stunning warm sun on your skin.

I've known, seen, felt, and suffered more then any twenty seven year old woman should have to. But that makes me who I am. CF does not define me. CF is a part of me and has shown me how to have strength, courage, determination, and perseverance.

So I guess the moral of the story to anyone reading this, is to never give up, persevere, never lose hope, and have faith that things will be okay. Don't be afraid to FEEL.  Physically and emotionally. Embrace it with open arms and an open heart.  It took me 27 years to fully understand and comprehend that life is a GIFT, so live it! Human society becomes robotic at times, in return missing all the beautiful things in life.  So next time you are in a grocery store running around like a maniac, driving too fast because you are running late, or simply feeling like your day is slowly getting worse; just stop for a second, close your eyes and truly FEEL what it's like to be calm and content.  Listen to the birds chirp, the wind blowing, or simply find peace in silence.  Then take a deep breath because without those breaths there would be no you, or no life. Then once you do, open your eyes, and if you truly believe it, I guarantee that you will see a whole new beautiful world.  And guess what? It's pretty special."

 

 

-  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.