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/

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

 

An Open Letter To My Future Donor

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Dearest Friend,

I feel we’ve met before, on another spiritual plane, in another time. I’ve spoken to you in the morning dawn and whispered to you late at night. You may not be ready to leave yet, and that is okay. No worries, I have time, I can wait. Live your life, have adventures and find love. You and your family have been in the forefront of my mind quite a bit lately. It is hard to express how much love I have for someone I have yet to meet.  I want to assure you that I will honor and celebrate your life everyday. That you will become part of my family and one day I hope to be part of yours.

Together our spirits will become one. We will hunt and camp together, sing in the rain, act silly under a summer full moon and dance by the firelight. I’ll teach you to write, and together we will finish my book. We’ll meditate, pray and be still together; we’ll be active and strong. We’ll see the mountains of Montana and the deserts of Arizona. When I learn more about you, your passions will become mine. We’ll pursue them together. We’ll root for your team and mine.

There is no thank you large enough in this world for the gift you and your family are giving us. You are giving me back my life. You are giving parents more time with their daughter, siblings more experiences to share, nieces and nephews a chance to learn who their Auntie is and a husband more time with the love of his life. The only way I know to repay you is to live everyday to the fullest, to speak your name, share your story and honor your life.

With love and gratitude,

Chelle

Be a hero. Be an organ donor

My Best Birthday Yet

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“There are those who hate to see their birthday arrive. Ah, but not I. For each year is a gift, each day is a gift. I am thankful and am grateful for this day of my birth. I find motivation within to live this year so let it begin!”

~~Theodore W. Higginsworth 

 

Waking to a light rap on my door this morning, I slid my eye mask up to my forehead, took a deep breath and started another day in the hospital. A young care aid pops in with towels for my daily wash up. “Happy 4th of July,” she declares rambling on about how quickly the day arrived and where did the time go. “One’s perspective is relative,” I answer groggily from my bed. Looking at the confusion on her face I explain,”To you it may seem fast, however I have been waiting for a heart transplant for 324 days. To me it feels like an eternity.”

After she leaves, I wash up and eat my fake eggs. Shortly after, my husband shows up bearing gifts and clean clothes. I think I was more excited for the clean underwear than the gifts! We sit on my bed and get down and dirty. Not like that, gutter mind. I opened packages from my family as well as strangers. I was overwhelmed by everyone’s thoughtfulness and generosity. About this time there was a knock on the door, three mail room employees walked in with donuts singing to me. And that was the beginning of a great birthday filled with off-key singing. The doctors sang during rounds, the nurses sang at shift change, and just when I was ready for bed the food service workers sang and presented me with a small cake. In between vampiric nurses and singing doctors, I managed to video chat with my family which was much-needed. I also got to go outside for the first time since I have been here. It was hot a humid and only lasted five minutes, but I was glorious!

Every birthday has been a hard-earned milestone for me. I say this every year, and every year it’s true; I never expected to still be here, which in itself is pretty amazing. I have learned to think of my heart defect as a wonderful gift. This gift has made me grateful for every day, even the bad ones. Having TGA has forced me to realize how valuable and precious time is and has allowed me time to learn beneficial life lessons. For instance:

  • procrastination is for the healthy and the young
  • every moment is a miracle
  • don’t waste time on false or toxic people
  • always check my feet for slippers before leaving the house

Today I proven once again, no matter what my circumstances, with a positive attitude and the love of family, friends and strangers I can make any day into a wonderful one.

Chelle

Be A Hero. Be An Organ 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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Soul Mates

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I believe Rumi said it best when he stated,

“The minute I heard my first love story I started looking for you, not knowing how blind I was. Lovers don’t finally meet somewhere. They’re in each other all along.”

I am so fortunate and grateful to have found my soul mate. So many people these days never find that connection. Our spark was instantaneous and strong. We complete each other. Our souls intertwine perfectly.

Although Bill was in the medical field, I was nervous about explaining my cardiac situation and future transplant.  You see, my first marriage sort of imploded partly due to the fact that my ex wasn’t mature enough to handle my illness. I never expected to find a man who would not only be accepting of my impending heart failure diagnosis, but would jump right in to the chaos with me. But that is exactly what Bill did, with a “bring it on” attitude.

My health stayed stable for the first couple years of our relationship, then it took a nasty downhill ride, like a skier on a black diamond slope. This was the start of his caregiver metamorphosis. He takes care of me in so many different ways, a loving approach and a no complaints. Sitting in on countless doctor visits and sleepless nights in uncomfortable hospital rooms, holding my hand through it all. And when everything seems to much for me to handle, he is at his best; holding me, wiping away my tears and whispering encouraging words. He restores my hope and faith.

We are grateful for everyday we have together, more than other couples it seems. We understand how precious life really is, how health can change in an instant. Our unity is strong, I know we can withstand anything that comes our way. My heart transplant is a perfect opportunity for us to grow stronger and deepen our love.

We chose each other long before we came to our Earthly bodies and we will be joined together again when we leave them.

An Open Letter To My Heart

 

My life coach Theresa Ann  and I have been discussing whether or not I was ready in all aspects of my life for my upcoming heart transplant. All range of topics came up; home life, family, physical ability, the spiritual aspect, the mental aspect, even the legal aspect if something where to go wrong. Yes, I feel absolutely ready and prepared.  Or so I thought. Until she threw this one at me…will you tell your native heart good-bye? And if so, what would that dialog look like? WOW. The thought never occurred to me. She is correct of course. After much meditation and prayer on the subject, I came up with a letter. I would now like to share that letter with you.
My Dearest Heart,

When I was first aware of you, I did not like you much. You seemed moody and agitated. People were constantly asking about you and poking and prodding me on your behalf. I hated it and I hated you. You embarrassed me in front of my friends, and no one wanted to play with me. My high school days were no better. The constant name calling in the locker room, the whispers in the halls when you were being monitored by the doctors. I never felt like a normal child. I lashed out. I was awful to my siblings and parents. I didn’t understand, why me? Out of five children, why me? I did not have the tools to cope with it.

Then as a young adult, I failed you. I should have watched out for you. Cared for you better. I am sorry I did not. I chose to forget about you. I tried to have a normal life. As you know, that did not work out. You seemed to get more agitated and sluggish. There were a few times I thought you were going to stop working and leave me all together. But then, I heard you whisper my name. It opened my eyes. I knew I had to start taking care of you if we were going to make it.

We have been through so much in our 42 years, some good and some not so good. You have always been there for me and not once did you let me down. They opened me up and scrambled you around, shoved wires and stents through you. I am so proud of you. You have done a great job and soon you will be able to rest. I am trying to be mindful of our time left focusing on each moment. Trying not to look too far ahead. I hate the sympathy I am getting. Some days I want to hole up and hide with you. Be around me is hard for some, it isn’t a comfortable thing for people, they don’t know what to do. But that isn’t your fault, I am sorry if I blame you.

I am not sure if I am ready to give you away. Part of holding on, is letting go I have asked to see you after surgery. To have proper closure, let’s hope they will. It must seem strange to you that you are being replaced. It feels strange to me too. But if I don’t have the surgery I won’t be around anymore. I know your replacement will be honored and celebrated. As it should be. I promise I will always cherish and love it as I do you.

I hope I have shown you much love and compassion. You should know I am grateful for the lifetime we shared. Your lifetime. Your spirit will mingle together with my donor heart. I will never forget you.

I write this with all the love I have.

Your Lifelong Companion,

Chelle

Be A Hero. Be An Organ Donor.


Enjoying My Last Weeks of Freedom

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We have a plan! My husband and I drove down to Pittsburgh for my three-month clinic visit, ECHO, and 6 minute walk test. My ECHO results haven’t changed much but my 6 minute walk did. In June I walked 700ft without oxygen, this time I walked almost 400ft with oxygen. This result completely correlates with my worsening symptoms of chest pain, shortness of breath and exhaustion. Now when I say worsening, I am referring to shortness of breath when dressing, showering, and at rest. I rarely have the energy to leave the house and I no longer do housework. I know, I know, you’re jealous. You wish you could be stuck at home reading, binge watching The White Queen or Fargo and eating gummies. Wait, maybe you are, are you?

My cardiologist explained that because patients with CHD tend to decline quicker than non CHD patients, there is a small window of opportunity where I am sick enough but not too sick to under go surgery. With this in mind, we have agreed that it is time for IV Milrinone. Bring on the Go Juice! So that is the new plan. He will admit me for heart failure, start me on Milrinone and petition for a 1a status change as a special circumstance case. Once that happens, I will stay in the hospital until I receive a donor heart. My transplant coordinator is estimating I will get “the call” in July or August. Which gives me plenty of time to meet others who are waiting, eat lots of fantastic hospital food, and acquire the permanent odor of disinfectant in my nose.

I can’t tell you how happy I am to have a plan. Even though I have not been admitted yet, knowing it will be soon makes all the difference.  The hospital is like a second home to me. Don’t get me wrong, I am not excited to be two hours from my husband, furbabies and friends; however, it is a small price to pay. I am a professional patient. I am kind to the nurses and aids and am very comfortable in a hospital setting. these traits are to my advantage and will make my stay easier. I still would much rather be at home. If i did not, I would for sure be a crazy person.

They will try to make my stay as comfortable as they can, letting me wear my own clothes, enjoy the balcony garden and wander the hospital. I have packed my bag, my husband has packed his and we have arranged care for the cat and dog. There are a few activities I have planned to pass time till the call to be admitted comes. I am sewing telemetry bags to hold my heart monitor while in the hospital.  I would also like to create a pillow from an old shirt of my husbands and spray it with his cologne so as to feel him near me for the nights he is not.

Staying healthy is of vital importance now, as is keeping my head in the game by continuing my daily meditations,  journal and blog. I feel strong and focused, loved and supported.

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.

Walking Through Life in Sweater Boots

Recently I was asked what life on the transplant waitlist was like. Frustrating. Limiting. Discouraging. Defeating. Encouraging. These were my first thoughts. But as this was an actual video taped interview I knew that wouldn’t cut it. The question gave me pause. What  was my life like these days? Challenging. That’s what is. 

I am plagued by constant fatigue to the point of exhaustion, added to this I am not receiving enough oxygen to my brain or extremities. Both of these issues tend to make activites difficult, if not interesting. I have learned to adjust, rethink things and adapt. And once I have learned what my new normal is…it changes! Most of my days are pretty laid back and mellow. I usually can be found in fleece lined leggings, thermal top and sweater boots. If it’s winter I add a beanie and fingerless mittens. Yes, this is inside. You see with heart failure the blood doesn’t circulate well to the exteremities, it goes to the important place like organs. Also I take coumadin, which thins the blood thus, making me colder. So yes, even in 70 degree weather I am cold.

I only have so much fuel in my tank, therefore I have learned to prioritize my days. Cooking supper for my husband, peddling on my machine, and taking a walk with hubs and the dog in the evening are my prioritites. Now, if I have a doctor’s appointment or other appointment then that is pretty much it for my day. I go home I sleep. My tank is pretty much empty, meaning no walks, no cooking dinner, no nothing.

The last few days I’ve been feeling more run down, with more symptoms such as chest pain and shortness of breath. For now, until I adjust to whatever this new normal is, I will lay back in my recliner keep the tube up my nose and keep walking through life in my sweater boots.

Chelle

Be A Donor. Be A Hero.