Alpha-1 Antitrypsin Deficiency
I had lived a perfectly healthy life for 50 years when I suddenly became unwell with several subtle changes, then suddenly became jaundiced.
I was diagnosed with Alpha-1 Antitrypsin Deficiency and became very ill very fast. I was only sick for 5 months before I was at a 40 MELD and earnestly dying.
I was given a liver transplant on April 1, 2017 with only hours left. Those were terrible months, with HE and severe ascites and edema, as well as failing kidneys. I had the support of my wonderful sons who were my caregivers and my family and community. My faith carried me through those dark days.
My transplant was at Cleveland Clinic and the team I have there is amazing. My life has been beautiful since my donor saved me. I have met and married the love of my life and have traveled and just lived!
I never thought about my liver until it got sick. Your liver affects every part of your body and it won’t tell you its sick till it’s very sick. My family never knew we had the Alpha gene. Since my diagnosis, several have been tested and a niece and nephew are diagnosed, but thankfully they are aware and asymptomatic as of now.
Liver disease is hard! You need support and your caregiver does too.
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