My Heart Transplant Journey So Far..

Happy Waitaversary To Me! Today marks the one year anniversary that the United Network of Organ Sharing added me to the national organ transplant wait list. I am very grateful just to be on the transplant list. It is quite an exclusive group, like a posh country club without the fancy food, expensive booze and pretentious conversation.

Looking back at this past year, there have been many changes. Some good, some not so good. The first ten months was filled with travel restrictions, extreme fatigue, emotional instability  and the beginning of my loss in independence. The first thing I have learned after two months residing in the hospital, is those ten months were a cake walk compared to this. I had my furbabies, my husband and we were all together at home. Now we are two hours away from each other. And every day we wait seems like an eternity.

time I have to agree with Dr. Einstein here. Residing in this place I have experienced time on time’s terms. And the terms are, none. It doesn’t exist. It’s an illusion. It’s all relative. When you are living your usual normal life, time seems to fly by. However, when you are waiting for a life saving organ transplant it moves at a snail’s pace. Once I started getting the “go juice” pumping into my heart, the game changed from a physical one to almost all mental/spiritual one. The thoughts foremost in our minds are; how many more days will we have to wait, will they find me a match, and if they don’t, I want to die at home.

Life is constantly surprising me. Death has always been my adversary, now in a strange twist it’s more of an ally to me. And that, my friends is very unsettling. I feel as though we are playing some kind of hellish game. With every thought or prayer of the doctors finding me a donor heart soon, I envision Death waiting in the shadows with an irreverent grin on its nasty face. Yes, I understand that my donor’s death and transition to the next plane will happen regardless of my obtaining a heart. Yet the guilt and sadness lives on. For now.

Some days I feel as though I have woken up in the cuckoos nest and expect to see Jack Nicholson walk around the corner at any moment. These are the times I have to practice self-preservation through self-care. The do not disturb sign goes up, the sleep phones go on and The Honest Guys do their thing. Keeping busy is my salvation here. Working on my writing, practicing meditation, reading, goofing off with the nurses and enjoying family visits have all been my saving grace. I feel there are many more lessons to be learned. Letting go is one of them. For if I can let go, I shall find peace again.

Chelle

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With Love, Humor and Grace

Pulling back from an emotional kiss with my husband, I saw the sadness in his eyes, the sadness that mirrored mine. He didn’t want to leave but I knew he couldn’t stay. Letting our tears flow, we held our embrace a little longer, then walked hand in hand toward the elevators. We expressed our love in a public goodbye, then I stood and watched him go until he was out of sight. I struggled to hold back the flow of tears while George and I turned around, desperate for the refuge of my room.

Almost to my destination, I caught the eye of a nurse whom I have become close to. Noting the look on my face, she asked how if I was alright. I mumbled “Sunday’s are the hardest days”, as tears flowed down my cheeks. She stopped what she was doing, wrapped her arm around me and we walked down the hall. Once in my room, she held me as I cried on her shoulder telling her how much I missed my husband and my home. She explained that being away from those we love can sometimes be a harder struggle than the actual battle we are facing. She reminded me of what I strong woman I am. Reminded me that not only have I have made it this far, but I did so with love, humor and grace. And reminded me that when we get through to the other side of this journey all the suffering and sacrifice that my husband, my family, and I have made will all be worth it.

My strength being renewed, I gave her a hug, thanked her and told her to get back to work. With my head held high, I wiped my tears and told myself I was ready to continue the journey.

I only wish she could have done this for my husband as well.

Chelle


Please register to be an organ donor so someone else doesn’t have to go through what we are. Wwwdonatelife.net/register/

Where I Found Myself

My name’s Chelle and I was lost. Not lost in the sense that I didn’t know which direction to turn, but more in the sense that I lost who I was. I felt like a shell of my former self.

An old friend recently described me as a “wild girl” in my youth. I was as confident, outgoing, spunky and fearless as a girl at a frat party. These traits stayed with me through my twenties when I traded fearlessness for recklessness and negativity. I was in a bad relationship, worked two jobs while going to school full-time and practiced virtually no self-care, ignoring my cardiac situation completely. When the first indication that my health was beginning to fail, I was worn down by life and a bad marriage; I was barely thirty years old. This was the first time I was truly lost. I decided I had enough of my own BS. I put on my big girl panties and took action. I moved back to my home state, reconnected with my family, made an appointment with a cardiologist and divorced my husband. Pretty soon that spitfire girl of my youth was back, wiser and happier than before.

A short time later I met the love of my life. I snatched him up and we were living the dream. Until our world came crashing down in six words. I think it’s time for transplant. We knew this day would eventually come, but it still felt like a punch in the gut. After the initial shock wore off and we devised a game plan, things smoothed out for awhile. But as my heart failure progressed, I became as insecure and timid as a virgin on her wedding night. I slowly lost my independence, my memory and cognitive function declined, then the extreme fatigue set in. I fell into a massive funk. And I stayed there.

You could say I was going through the five stages of grief, and when I fell upon acceptance I settled there like a cat in a sunbeam. I was waiting for a heart transplant and that is exactly what I did. Waited. I kept telling myself I should be enjoying the time I have, spending it wisely. Instead, I went into escape mode. I escaped into everything but life; books, games, tv, food. This wasn’t like the last time I was lost. Before I was able to resurface and regroup. This was different. This time I was stuck like my boots in the spring time mud. Not going anywhere. Complete halt. I tried every tool in my toolbox; meditation, yoga, inspirational reading, praying and short walks in the woods. Nothing. I completely lost my mojo.

By now you’re probably wondering where did I find myself? Where did I wander off to? I was where I have always been. Within. The path I took to find myself started with a gentle nudge from my therapist. “Journal”, she said. I looked at her like she was from another planet. “You’re kidding right? I hate journaling”, I told her. “Just try it for a week or so” she suggested. I rolled my eyes in disdain, and reluctantly agreed. At my next appointment, I had to eat crow. It actually helped to verbally vomit in my notebook. As I continued spewing my emotions on the page, the universe gave me a huge bump. I reconnected with my birth sister Theresa Ann, who is a life coach . With her assistance I started to see glimpses of my old self again. With encouragement from Theresa and my husband, I took my journal and started a blog. My goal was to inspire other patients waiting for transplant and at the same time educate the public of the importance of organ donation. By the time I was admitted to the hospital 34 days ago, I was really finding my voice. The sparky, sarcastic and positive woman was back.

We all feel lost and alone at some point in our lives. We try desperately to climb out of the muck. Our friends, family and therapists can point us in the right direction, however; it is only when we ask ourselves the tough questions and stare into the sometimes terrifying abyss that is within ourselves, do we transform back into the butterfly.

Of course there is the chance I am completely wrong and it is all the go juice (Milrinone) pouring into my vein. Guess we’ll never know!

Chelle