When I started this blog, I decided I was going to write the truth. Whatever that may be. It may not always be pretty. it may not always be happy. As a matter of fact it may even be hard to read at times. But it will be honest. Here is the plain truth. I am exhausted. I am exhausted all the time. Some days it is more severe than others, but it is daily. This is the kind of exhaustion where you need to rest after showering.
Most people think that I am still living my life as usual until the call comes. It isn’t like that at all. Everything starts to change. One question that people get asked a lot is, if you could know your future, would you want to? Well, I know mine. And frankly, it sucks. Although I am absolutely confident I will get the call with a donor heart offer, my body is dying; my husband and I have to sit by and watch it happen. More than that, have to experience it happen. Every day I am waiting for that call, my body gets weaker, I get more short of breath, my memory slips a little more and my ability to comprehend and follow conversations becomes more difficult. I take 16 different medications daily and I am at my dosage maximum. The next treatment available is IV meds or an artificial heart pump. These treatments are merely a way to keep me alive until the call comes.
It is all a roller coaster ride. I have good days and I have bad days. I never know what the day will bring. Some days I can run an errand and some days are spent on the couch. The emotional ride I am on can be difficult for us to deal with at times. I try to keep my frustrations in check, I do not wish to add to my husbands stress and worry. He is my rock. Not only does he have a demanding full-time job, he cooks, takes care of things around the house, is my care giver and comes with me to all of my doctor appointments. It is the alone time that is the most difficult. Even though now a days I am asleep more than I am awake, those hours when I am by myself are starting to weigh on me. My mind starts wandering, and that is not a good thing when you are waiting to find out if you live or die.
I know I am being tested. My strength, my courage, my patience, my faith are all being tested. I know I will pass the test. I have to be stronger than the silence.
Be a donor. Be a hero.