Every Obstacle Is An Opportunity

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Officially, I have end stage heart failure. I am on an end stage heart failure medication that flows directly into my heart. Having said this; I, myself, am far from end stage. I have been on the transplant list at a status 1Ae for 26 days now, but whose counting? Actually, UNOS is counting. Every day you wait, counts. I am finally at the top of the list for my blood type and body size, so our wait is nearly over. It is important you know that a heart transplant is not a cure, it is merely an exchange from a terminal illness to a chronic one. And that is fine by me. I know how to do that, have been doing it my whole life.

Being a long-term patient here as been trying at times. I’ve laughed, cried, screamed (internally of course), shook my head, rolled my eyes, and cried some more. And I wouldn’t trade one minute of it. I have literally stripped down my life. No running errands, no business dinners with my husband, no traffic, none of the day to day distractions. I am left with myself. Just me. Just my thoughts. I could ignore them, keep myself distracted in other ways like tv, books or music. But that isn’t me. I embraced my thoughts. I chose to make this experience into an opportunity. I took a hard look at my life, and asked hard questions. My answers have enlightened me.

When faced with the reality that this surgery could lead to the end of my Earthly existence, I realized I have everything I need. Although I am not ready to leave them, I know my family loves me whole heartedly and any past issues are long resolved. I have created and maintained valued friendships, and found my best friend and soul mate. And most importantly, I have found purpose in my writing. I am fulfilled.

When I arrived here, I felt my world had shrunk. I was wrong. My world is overflowing with love, and I have been enlightened spiritually. My life is richer because I am here. For the first time I am fully present. In this moment. Facing my own mortality has taught me many things. Life is not what I do or what I have, but who I am. And that cultivates love. To fully engage with those around me. To listen with purpose and intent, instead of letting my thoughts wander.

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I expressed my gratitude every day leading up to my hospital admission. All our necessities were met; house, car, health insurance, food. Life was great, and we were happy. But some how, I missed it. There are so many more things that I took for granted that I don’t now; fresh air, birds singing, neighbor children’s laughter, the smell of the hardwoods and dirt, sunshine on my face. Even without these things, I am still very happy.

Without death, life would have no meaning. I am fortunate to learn this at such a young age. My journey is nowhere near over, and I will continue to grow and flourish. If I could give you one take away from my experience so far it is this. Don’t be a slave to your work. Sit in quiet reflection. Engage and be present with your loved ones. Because time is an illusion my friends. You’ll blink, and it will gone.

Chelle 

Click here to register to be an organ and tissue donor

 

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Scream Or Enjoy The Ride? The Heart Failure Roller Coaster

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The roller coaster is the heart center of most amusement parks. It gives us the thrill of adventure, a rush of adrenaline and an enjoyable amount of fear. Coasters come in all shapes, sizes and speeds. The fastest is in Abu Dhabi, United Arab Emirates and tops in at a whopping 149mph.

Another roller coaster that is less amusing yet seems just as fast, is the coaster I am on called Heart Failure. This is a ride I stumbled on to many years ago. I didn’t choose to ride this coaster and unlike other rides at the park, I cannot simply disembark. When this one stops, I must transfer to another one; the heart transplant coaster. I do not know when that will be, only that it is getting closer.  In the mean time, I have been able to take control of the current track through meditation and breathing exercises.

My heart failure track has many slopes and peaks. It circles back on its self, yet is constantly changing. I am usually in the front row alone; with my husband, family and friends constantly moving to different sections of the cart. My faith in Spirit has cushioned the seat, as the love and support of my family has smoothed out the jostles and jolts.

When my heart is out of rhythm or skipping beats, the cart is at its highest peak on the track and getting ready for a steep dive. These were the parts I used to white knuckle and scream all the way down. Not so much now. These days, I pop an Ativan, grip my husband’s hand and we ride down together. Most of the time I am happy.  I can see the track ahead. Then out of nowhere guilt, frustration and grief pop up and the track goes all corkscrew like. At least that section is emotional, it is the physical bumps I have to watch out for. I wouldn’t want to be projectile vomiting on the person behind me!

At night when the track is beautifully lit with twinkling lights, the journey is the scariest. As I peer over the edge, I can see straight down into the abyss. And there, in the shadows, waits my old adversary, Death. I stare long and hard mustering up all my courage and strength and yell, “Not tonight my friend!” I turn back in my seat and smile. I’m ready for the next loop and curve. At least the next coaster will have a different view!

Chelle

Be A Hero. Be A Donor.

 

40 Years Since the Miracle of My Rebirth


My rebirth. That is exactly what it was too. If you’ve been following my blog,  you know I was born in the early seventies as a blue baby with a heart defect called Transposition of the Great Arteries (TGA). A few months shy of my third birthday, I underwent TGA Senning repair at The Mayo Clinic in Minnesota.

TGA is a very complex condition requiring multiple procedures and surgeries if the infant is to survive. See, my blue blood that enters the heart was going straight back into my body instead of through my lungs. And blood coming from my lungs went around and right back to the lungs instead of out to the body. There are many types of congenital heart defects making it the most common birth defect and the deadliest. US statistics show that approximately 40,000 babies a year, 1 in every 100 are born with a CHD. And for no reason other than God’s plan, I was chosen as one of them.

Today is a celebration of that miraculous day and a time of reflection. As I contemplate the journey I took to get here, one thing stands out above all others. When the hell did I join the old person’s club? Seriously folks. When? Was it when I first started taking cardiac meds? Because that was childhood. When was it that I started having more in common with the elderly than my peers? And, when quite frankly, did I become ok with it? We all will be diagnosed with old age at some point.  @michaelkinsley is correct when he states that some of us get the symptoms prematurely, I am proof of that!

I take ten different medications daily then an additional three more daily to counteract the poison from the first ones. With a whopping grand total of 31 actual pills daily. This doesn’t include any as needed pills. The side effects are awful, I shake like a Parkinsonian just brushing my teeth and putting on makeup. But, the meds keep me alive while leaching their venom so I continue taking them…and will for life, just different ones and hopefully in a lesser quantity. I have a lovely clear leash that attaches to a bottle, the collar of which rests annoyingly in my nostrils. I sleep reclined, enjoy napping and am usually constipated. Not everything is bad though.

I have found myself. I have learned to be still, to practice mindfulness, to listen to nature more and the tv less, to forgive, and to be grateful. Regrets? Sure, I’ve had them. I faced them head on like a boxer in a ring. Dealt with them, put them in their place and moved on. I have met a lot of people on my journey. Some are still in my life and others are not. I learned from them all and am appreciative for the lessons. Acceptance of my heart disease and future transplant has been easy. Losing my independence, not so much. Some people say I should fight it. Fight what? I already have it. I was born with it. I will die with it. Heart transplant won’t cure it, it will only change it. “You ask me if I have scars? yes sir, I have my scars.” William H. Bonney was correct. We all have scars. I am proud of mine. They represent battles won.

Death is my old adversary. It is inevitable. A part of life. I feel as though I have entered my final chapter, and Death has given me another test with extra credit. I am gearing up for battle. I have been in many skirmishes over the years; spiritually, physically and mentally, but the biggest is yet to come. I am prepared. I will go into this battle with the most powerful weapons I have; dignity, courage, strength, positivism, mindfulness, hope, faith, and for me the most important of all love. And in 40 years, I will celebrate again!

Chelle 

Be A Hero. Be A Donor.

A Spiritual Heart Transplant {Conversations with Myself}

First i would like to thank Spirit for such a beautiful day. I am sitting on our back deck in 70+ degree weather in February in Erie. It’s unheard of. Usually the topics I share with you have pertained directly to my wait on the transplant list. Today, I would like to share something very deep and personal with you. I felt that in order to be prepared for this physical heart transplant, I also needed a spiritual heart transplant. And this is how it happened.

I closed my eyes, relaxed my body and became one with my breath. I imagined it was a beautifully sunny day with the perfect temperature and light breeze. I was walking through a meadow of colorful wildflowers following a path of short grass. I came upon a small child of about three years old sitting on the path holding a blue daisy. She turned, smiled and welcomed me over. The child was me. She had long brown hair, big brown eyes with long eyelashes, perfect coloring and a big magical smile. She was wearing a red gingham sundress and had a scar down the center of her chest. This was our conversation.

me: hi, wow you’re gorgeous.

her: thank you, so are you.

me: how are you? how do you feel?

her: I feel wonderful. I am a miracle, and so are you.

me: yes, we are. would you like to sit in my lap? I held her to me and rocked her back and forth.

me: you are so brave and courageous. I hope I can be that brave and courageous for my transplant.

her: you already are

me: i love you so much

her: i love you too.  I have to go now. You can come visit me anytime

With tears streaming down my face I watched the little girl and her blue daisy cross over a small creek bridge and into the trees. I hollered out to her..goodbye baby girl.

*After I gathered myself together, I went deep. I went to the place I know I needed to go but till now didn’t have the strength or courage to go.

I closed my eyes once more and returned to the meadow. As I walked along the path I met a young woman of about 23 or so. She had short brown hair, big brown eyes and wore an old ball cap with a red billiard ball on the front. She was very thin and frail looking in her top and cut off denim shorts. The young woman was me. This was our conversation.

her: hi, I’ve been waiting for you. She told me you would be coming

me: it’s nice to see you. how are you doing? {we walked down to the creek and sat on the edge tossing stones while we chatted}

her: I am lonely but doing well. I miss my family. Are you angry because I left and moved out here?

me: angry? no way. I am so proud of you. That took guts kid, leaving like you did. You left everyone you knew to move to a place you’ve never been to start a life. That’s amazing.

her: but I didnt always keep in touch.

me: that is not all your fault. your family knew where you were and how to contact you. You cannot blame yourself for their actions. Although, you could have left a little differently than you did. Gave them more warning or explanation. But you did what you thought was right. What you had to do. Without your bravery and courage, I wouldn’t be the strong woman I am today. All the scary things I have done in my life, I did because of your decisions. So thank you.

her: your welcome, your turn

me: Are you angry with me? for not fullfilling your dreams? I am not a school teacher. And I don’t have any children. I know that is what you wanted.

her: You did fullfill my dreams. You are a strong and happy woman. You live in a place you love and have a man by your side that loves you and would move a mountain for you. how could I ask for more? as far as the old dreams, I am glad I had them. They got me through a lot of really hard times. but that’s all they were. You have bigger, more important goals in front of you now. After your transplant you will help others be strong like you. you are right where you are supposed to be. All the decisions we have made have led you to this very place in your life. You got this! Let all of that other stuff go, you don’t need it any more.

me: thank you. I miss you some times you know.

her: I am always here. but we are done for now.

With tears streaming down my face I watched that brave young woman cross over the bridge, take the hand of the little girl with her blue daisy and disapear into the trees.