Oksana

My name is Oksana, and I was diagnosed with acute intermittent porphyria (AIP) in 1995, a genetic liver disease. After my diagnosis, I suffered a severe episode of five consecutive seizures that temporarily left me paralyzed from the neck down. Thankfully, the paralysis was reversible, but I experienced significant loss of mobility and independence. Over the years, I have dealt with many AIP attacks, including high blood pressure, severe abdominal pain, nausea, joint pain, and excess iron accumulation, which has caused damage to my organs.

As a result of AIP, my kidneys have failed, and I now rely on peritoneal dialysis every night. I had a friend who wanted to donate her liver, but she was rejected due to size compatibility. My father carries the AIP gene mutation but has never been ill but he is unable to donate his liver; he is currently trying to donate a kidney to me.

I’m 47 years old and have one adopted son who is now 24. Before my health declined, I lived on an acre of land in a beautiful home with a German shepherd, goats, and chickens. Unfortunately, my kidney failure led to losing my job, selling my furniture, and moving in with my parents. Now, I face a critical need for both liver and kidney transplants and require regular follow-ups with my transplant team as I navigate this challenging journey. I look forward to the day when I can return to work and regain my life.