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

LLA

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.