One Year To Live

The story begins five months after I received my pacemaker in 1996.

I had been going to the doctor continuously with chest pain. My doctor was not one that didn’t take things seriously or ever put me off. She was amazing, always listened intently and took her time with all of her patients. Sometimes there would be very long waits in the waiting room. I knew it was because she cared so much and never ended an appointment until all of her patients questions were answered. She gave everyone the same time and respect, I was so lucky to have her.

She told me that because I was 26 and had a pacemaker device, that maybe it was anxiety causing what I thought was heart pain. After a few times of complaining about the same symptoms, she sent me for a chest X-ray.

Later that same day she called me and told me that I had swollen lymph nodes in my chest and that I needed to have a biopsy done to rule out lymphoma or Sarcoidosis. She told me that I should pray for lymphoma. My heart disease can be caused by Sarcoidosis, and nobody survives that. My biopsy was scheduled very quickly, I don’t remember any information I was given prior. I was still adjusting to my new life as a heart patient and this was almost too much to take in.

I had the surgery and was now playing the waiting game. Waiting for results and becoming more anxious by the minute. I remember standing in my kitchen with my parents the afternoon the surgeon was calling and praying I had Lymphoma. My Dad spoke up and said “If we are hoping she has cancer, this is bad”.

Finally, after what seemed to be forever, I was given the results. The doctor called and asked me to come into the office. I told him I just wanted to know now, that I couldn’t wait any longer. Long behold, I had Sarcoidosis.

From that day on I  began a series of tests. I remember sitting outside the X-ray department and the cardiologist I had been seeing came out to talk to me. I told him that I didn’t know anything about this disease and that I had been poked and prodded long enough without any information. He brought me in a dark dingy room, sat me down and his exact words were “Sarcoidosis can affect you from head to toe, inside and out. You have it in your heart and probably have less than one year to live. You should plan your funeral”. I don’t remember hearing a thing after that statement, it has been engraved in my brain since that day.

I was two months shy of my 27th birthday, with two children age four and one. I couldn’t believe this was happening, my worst nightmare. I cried so much that I couldn’t catch my breath. My family and friends were so upset, I saw no future. A few days later, I called the funeral home and made an appointment to make arrangements.

I can still remember that day like it was yesterday. Picking out my casket, songs, and learning how two small children should be involved in this process. It seemed unreal. I was going through the motions, while not really believing this was my life. How was I going to leave my children? They were just babies. I went home that day and dropped to my knees and prayed to God that I could live to see both of my boys graduate from high school.

I spent the next two weeks planning to die, spending most of my days on the couch crying. One day I was watching the Oprah Show, and Karen Duffy who was a Revlon model was on talking about Sarcoidosis. At this point, I still didn’t know how to spell this disease, I’d never even heard of it until two weeks prior. She preceded to say that she had Sarcoidosis of the nervous system, which was equally as rare as of the heart. I listened intently to every word. Once the show was over, I contacted the Oprah Show and they put me in contact with the Karen’s modelling office. Everything changed from that moment on.