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!
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 GoJuice! 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.