If you ask me to define my miracle, I will say that I'm alive - but that doesn't begin to tell of the many miracles that kept me alive. I tend to live in the moment, enjoy the gift of each day to its fullest, and try not to dwell on the hardships of getting here. Lately, flashes have been popping into my mind. Maybe it's time to talk about some of these experiences.
Sometimes when I try to remember, I just can't seem to breathe. The memories merge into a feeling of panic and I pull away. But today, I will find one memory to face. Perhaps I should start at the beginning.
Pre-Diagnosis
It was January 2009. I shivered with fever and cold as I lay underneath my mobile home with a hairdryer attempting to thaw frozen pipes. It was my first winter as a single mom. I knew to plug the heat tape in when winter came, but I didn't know there was a light that indicated whether or not the heat tape was working. When my pipes froze, my 102 + fever didn't have a say in what needed to be done. I couldn't afford to replace cracked pipes, so I had to fix the problem immediately. So there I was... racked with coughing, burning up with fever... laying under my mobile home in snow at below 0 temperatures.
That winter seemed to be horrific for viruses at Sunset Heights Christian Academy. The students continuously brought in viruses and I had pneumonia five times that school year. I fractured ribs and separated my sternum coughing. I even managed to get whooping cough in addition. I didn't know what was happening to my body, but I knew something was wrong, seriously wrong.
I struggled with bouts of pneumonia and sickness for five more years. My doctor thought maybe it was lupus, but it didn't fully add up. My inflammation markers were always extremely high, other labs were inconsistent as well. Finally, in 2015 one of my mother's doctors who was treating her asthma-like symptoms suggest an Alpha 1 Antitrypsin Deficiency test (though he thought it was highly unlikely).
Alpha 1 Antitrypsin Deficiency is a hereditary disorder. It lives in the liver and mutates the protein enzymes that produce Antitrypsin, which protects the bodies organs. The organ most impacted by low levels of Antitrypsin is the lungs. Alpha's often suffer from COPD and/or Emphysema without having smoked. It usually presents in the patient's 50's. Additionally, the liver can become damaged by the mutated proteins and Cirrhosis develops. While this occurs later in life in some patients, most patients experience liver symptoms from Alpha 1 in the first two years of life.
Mom tested positive as a carrier. She had 1 mutated gene and 1 normal gene. I immediately went to AlphaNet.com and ordered my own free test. It made sense! All the years of suffering suddenly might have a name. While I waited for results, I researched. What I found was not good news, but there was a treatment. That meant hope.
It was May 2015 (I don't remember the exact date) I graduated with my Masters Degree, celebrated, then came home. I remember my heart beat seemed to pause for a second when I saw the letter in the mailbox. My diagnosis was Alpha1 Antitrypsin Deficiency ZZ (which meant my father had to be a carrier too). My Antitrypsin level was 4 - normal is around 100. I finally knew why I had been struggling, but I had no idea the journey I was setting out on.
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