Liver Transplant Journey & Recovery

Hello everyone!

For those who don't know me, my name is Niama. I work in the arts and culture sector as an artist, curator, educator, musician writer and organizer in New York but have had the immense good fortune and privilege to create a global-facing footprint in my time in the space. My work is about making art, history and ideas accessible, and collaborating with and caring for artists across many disciplines to offer contemporary interventions that challenge, reconcile or reframe those histories toward something new and more equitable for all.

For a number of years now, I have been battling multiple autoimmune illnesses that attack my liver. At the beginning of 2023, I learned one of them has progressed to Stage 4, leaving my liver in a state that no longer allows it to function optimally. I have felt weak, seen my energy dwindle and literally watched my body transform into something I hardly recognize. In this last year things have gotten progressively worse: fluid retention, pain, substantial weight/muscle mass loss, poor appetite and more.

Last Monday (January 29), I had the fortune to receive an expedited appointment to begin the evaluation process for transplant list. We met with multiple members of the team. When we met with the lead surgeon he decided to admit me to the hospital immediately. He made no bones about things; we are clear that without this very important step I may not be here much longer.

This entire thing has moved incredibly fast. My head is spinning from time to time but I have decided to believe that the best outcome awaits me, and that my steps are being ordered by The Most High and my ancestors. I am moved by the care and commitment of these doctors and the people who I have shared this incredibly difficult period of my life with so far. It is time for me to stop suffering in silence and ask for help.

Thankfully, the complete battery of tests has been done in the 8 days since I've been an in-patient. Today, I was informed this process normally takes people 3 months! The team here is very motivated (due to the severity of my illness) to move forward with presenting my case, securing my place on the list and finding me an organ but I am asking for your help preparing for the post-operative portion of my journey.

As you might imagine, this is a MASSIVE surgery. I will be incapacitated for at least 2-3 months afterward. I will have no immune system as many drugs will be prescribed to prevent the new organ from being rejected. In addition to wonderful friends who have stepped forward to offer assistance with caretaking, I am raising funds for professional help from a part-time nurse (this will be a big expense), food-safe meal preparation, transportation, housing costs, therapies, and assistance with the income I will be unable to make for what I imagine what will be the remainder of the year. With your love, prayers and financial support, I know we can build the most calm, healing, peaceful and safe environment for my recovery.

I still have so much more to do in this world, and I am asking that you believe in me enough to help me through this.

With all my love, and utmost gratitude,

Niama