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.

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3 thoughts on “Enjoying My Last Weeks of Freedom

  1. We are praying everyday that your journey to a new heart is getting you and Bill where you need to be. I did backpack Milrinone for almost a year. Keep on keeping on, Chelle.

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