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

 

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

 

What I Do All Day

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Morning comes early here in the hospital with whispers by a nurse with a vampire fetish. Clicking on a dim light, she sucks blood from my PICC line into small tubes while I try to continue snoozing.  As she opens my door to leave, the white hall light splashes across my floor while the dings of my neighbor’s call bell sounds urgently. I roll over snuggling down trying to get comfortable, when I hear a soft rap on the door. What seemed like 10 minutes was actually two hours. It’s the care aid with a giant scale for my daily weigh in. I can’t help but feel like a resident at a weight loss camp. I bet they don’t get weighed in at 6 am though. After I see my bright red numbers appear she hands me my telemetry monitor, I gather my tubes, IV pole (which I named George) and shuffle back to bed.

An hour and a half later, I am lightly snoring away in dream land when I hear a light knock at my door. The door opens to the commotion of the nurse shift change. My night nurse bids me farewell till evening, while my day nurse takes my vitals and hands me morning meds. I slide to the edge of the bed, grab a hold of George and my tubes then  to the bathroom where I pee into what they call a hat. It looks like an upside down white hat, sits in the toilet and measures my output. Good times! I wash up for the day, grab George, gather my tubes and head to my recliner where I wait for my low sodium fake eggs and potatoes which I heavily cover in ketchup. I hear the pleasant ring of my video messenger and have a lovely chat with my husband before his meetings start for the day.

Shortly after that the nurse practitioner/fellow come in to see how I feel and my night was. I tell them what I told my nurse, they do a quick assessment and off they go. Then I settle in with a little light reading, currently The Heart of the Buddha’s Teaching, while I wait for the attending doctor to come around. Depending on the day, what happens next can vary. Once a week my PICC dressing gets changed, twice a week my tubes/caps get changed, twice a week my linen get changed and daily my room gets cleaned. If it is the last two I like to go for a walk, I can’t stand the smell of hospital disinfectant. When they are through I saturate everything with lavender water.

Back in my recliner, I listen to the buzz of activity in hallway. I feel like I’m living in a small town and peeking out the windows.  Engrossed in my reading and note taking, I am distracted by a call of yoo-hoo at my door. My nurse walks in with more meds, a new milrinone bag and takes my vitals, again. About this point my attending doctor, which changes every few days but is always a heart failure doc, comes in with his entourage of fellows, students and groupies. Today is Doctor Ramani. A tall Indian man with kind eyes. I repeat to him what I have told the three people before him and he tells me what the attending before him did. “It is just a waiting game now and we will make it homey as possible for you.” Ok, then.

After another trip to the bathroom, dang the IV lasix works well. Me and George go for a late morning stroll down the hall. I walk and George rolls about 75 feet, then I return to my room. I curl back up in my recliner, pop open my laptop, find a good movie to watch and wait for my lunch to appear. My favorite is the hot turkey with mashed potatoes and carrots. I have to say it is a strange feeling not to be able to go to the fridge anytime I wish. I do however have a snack drawer and the nurses let me store things in their fridge. When I am done eating, someone comes in and grabs my food tray. Then my nurse pops back in with more meds, vital check and blood draw. Are you seeing a pattern here?

Now I am free until my next meds/vital check at 5:00. I usually try to walk every hour if possible, take a nap and do some writing. Walking the halls is a good distraction because I can chat with people. Mainly the nurses so far, it seems I am the only patient up moving around. My day is also sprinkled with battery changes, extra meds (potassium, magnesium), aids documenting my input/output, and just random whatever.

Around 6:00, I am back in my recliner to await my dinner drop off. I should explain that I get a menu everyday to choose what I want for the next day. I usually make substitutions of course, I like something lighter for dinner. The food isn’t too horrible if you know what to order. I like to walk a bit after I eat then wash up and settle in bed for the night. By 8:00 I am nestled down in my bed, my video messenger ringer goes off and I chat with my lovable hubby again. After we blow kisses and say our good nights, I practice a little meditation to boost my spirit and clear my mind. Just as I am getting drowsy, there is a knock at the door. My day nurse pops her head in to say she’ll see me tomorrow and my night nurse walks in. See gives me more meds, checks my vitals and says she’ll be back in a couple of hours to draw blood. Of course she will. And like clock work, the vampire nurse is comes in, clicks on a dim light and sucks blood from my PICC line.

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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.

My Fire Has Been Ignited

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A month has gone by since I have written a post. My energy has been knocked down and I lost a bit of my drive. I have been journaling my thoughts, although I do not know if they are blog material. I started this blog as a personal outlet, a place to lay my thoughts so they would not fester inside. Along the way, I lost my vision and started writing for others. I’m not sure why, it isn’t as though many people read or even follow my blog.

I have been compiling memories to paper with the hopes of writing a book about my journey. I want others to know what life is like for heart failure patients and for other patients to know they are not alone. If I help one patient with this blog or change one person’s mind to register as an organ donor, then I will have accomplished my goal.

Another goal is too fight through this relentless soul crushing fatigue.  Since my heart can’t keep up with the demand of my body, the blood is diverted away from muscles and tissues in the limbs and is sent to vital organs instead. Because of this lack of circulation, everything is a monumental task…or feels as though it is. But, i am resilient. I am ready to continue my fight!

So…I will keep writing.

Chelle

Be A Hero. Be A Donor.

The Circle

Many years ago I attended a company seminar and acquired the most important tool in my tool box. I don’t always remember to utilize it, and recently a good friend reminded me to. Waiting for a phone call that will change my life and allow me to continue to live it tends to take a toll on the nerves. Anxiety creeps in, stress creeps in. I am always questioning. Is that phone call the coordinator with a donor heart offer, will it be today or tomorrow and if so am I ready, will the call even come? It’s enough to drive me mad.

If I want to stay sane, I need to remember my circle of control. I’m a visual person. I hold out my arms and make a circle. I visualize the things I can control inside the circle and things I cannot outside. Some days it seems like nothing is inside my circle. Those are the bad days. But, I know they won’t last and the good ones will come back around. The ones where I can see clearly into my circle. I see myself eating healthy, walking, meditating and keeping my attitude positive. If I can have more good days than bad and keep my sights set on the inside of that circle…I’ll make it!

Chelle

Be a hero. Be a donor.

https://www.donatlife.net/register/