After a fun and exhausting Wappen it was time to finally find out what the heck was wrong with me. During the waiting period my father had recieved the final diagnosis for Alpha 1-antitrypsin deficiency or A1AD, (he was also experiencing wheezing and coughing while sleeping) and I was pretty much 100% sure this was my problem as well. All the symptoms were there and it's very likely to be passed on to the next generation. These are some of the symptoms descibed in wiki: "Symptoms of alpha-1 antitrypsin deficiency include shortness of breath, wheezing, rhonchi, and rales. The patient's symptoms may resemble recurrent respiratory infections or asthma that does not respond to treatment. Individuals with A1AD may develop emphysema during their thirties or forties even without a history of significant smoking, though smoking greatly increases the risk for emphysema."
A1AD is totally treatable and the genetic mutation my father had was of the lowest degree so I was almost hoping this would be my diagnosis as well so I could start getting better! Well I wish.. The CT-scan showed a huge tumor (9-20cm in diameter) on top of my left lung (going over on the right one a little bit as well) and since that was the last thing I ever expected it hit me hard, really hard. Took me a while to realize that the doctor was actually talking about a TUMOR on my lung, but when it finally sunk in my life just stopped. I asked the doc some questions and he tried to calm me down by saying it's probably benign but all the horrors of cancer and death came flooding in my head at once and it almost crippled me. I managed to ask when I'll get more answers and he told me he would call me on Monday afternoon and that he would consult some cancer specialsts and put together a meeting (Monday) to determine my future care. The good news in all this was that the lung biopsy came back clear and the NSE value was only 24 when 18 is normal.
I somehow managed to walk to my car but with every step the fear became worse and by the time I got the car I was totally overwhelmed with sorrow and fear of my life. For the first time in my life I was faced with the possibility I might die soon. I think I sat in my car just crying and staring at nothingness for over 30min trying to gather myself to call Heidi and my parents with the grave news. Since Heidi was at work I thought it would be better to send her a message in case it would be a bad time for her to pick up the phone. After doing that I had calmed down enough to try and call my dad without losing my composure on the phone. That didn't work so well, all I could muster up was something like "it's a tumor, I have a lung tumor".. That was an exhausting phone call. After a lengthy conversation with my dad I was calm enough to call Heidi who kept trying to call me a few times while I was talking to dad. That went a bit better but all sorts of feelings was stirring up with every minute passing so after the conversation with Heidi was over I didn't drive away for another few minutes. The rest of the day was pretty much a blur..
I did write my sisters with the bad news and some close friends as well but at this point I didn't want that many people to know.. It was bad enough I had myself guessing what it could be.. I think I narrowed it down to a likely adenocarcinoma if it didn't turn out to be benign.. But I tried to stay positive. I had the longest weekend in my life in front of me..
Diagnosis: D38 Turmor Thoracis
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