For Patients Caregiver Tips and Advice For Medical Professionals

Amy P.

Budd-Chiari Syndrome

Waking up in the ICU after 2.5 days in a medically induced coma initiated by massive internal bleeding was a shocking almost out-of- body type of experience. I have Budd-Chiari Syndrome, a rare condition of the liver that reportedly affects only 1 in every million people, and simply put is caused when blood clots block the flow of blood in and out of the liver. The blockages caused internal pressure to build in the veins in the esophagus which eventually ruptured causing near fatal internal bleeding. Upon waking, I was immediately told how dire my situation was, how I was very close to dying, and how I would likely need a transplant.

Though the haze of trying to collect my senses, I had fear, I had questions—Would I live to see my 1.5-year-old daughter become a woman? Would she grow up without her mother? Would I be able to return to work and help support my family? How did this happen? How could I not see this coming? How could I have neglected myself to the point of almost dying? Am I going to spend many years hoping for a new liver while my health completely deteriorates?


Along with fear and questions, I could see myself clearly for the first time in my life. I was not a pretty picture. I was over worked, over stressed, focused on all the wrong things, too busy to take care of my own very basic needs. I was strung out from anxiety, anger and some depression, and functioning with a level of detachment from almost everything. I was a shell of a human being. – I was part of the walking dead of society. I had lost sight of my purpose and what really mattered.

After 5 additional days in the ICU- I was sent home to continue my recovery. Feeling very weak in every way possible, I barely left my bed for the first couple of weeks only to meet with the doctors who were providing my long-term care, and assisting me with connecting to a liver transplant center to review my case and consider me for listing.

As the weeks passed, I slowly started to regain strength physically and emotionally. To my surprise, compassion became an important part of my recovery. I seemed to have a heightened awareness to the emotional energy people brought to me or around me. I was moved to tears by people who brought kindness and compassion. My doctors, my family members, my friends, my boss, my yoga instructor, my acupuncturist, and even some strangers were helping me to heal in ways I can’t really find the words to express.

A year later, I am blessed to say I have been listed for a transplant with the very low MELD score of 9, and I have returned to work full time. On occasion, I still ask questions in which no one can really answer, but the fear is now gone. Will my disease progress to the point of becoming critically ill again? Maybe. If I do need a new liver someday, will I get one? Maybe. Will I live long enough to see my daughter graduate, get married and have her own family? Maybe.

Do I have this day, and with it the opportunity to deepen my connections with those around me? Yes. And that is all that really matters now.


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