I’m going to need a new liver.
Some of you may know about my personal history with illness, and if you follow my blog you may have even read posts about my long history with Ulcerative Colitis that I have had since I was three. I was always told that it would be my demise, and doctors projected that by 20 years old I would have colon cancer. Living through my teens and twenties with only minor flair ups of the disease, it was to my great surprise and horror, that at 32 years old (2005) I was told, while living in the Netherlands, that I had a rare biliary disease, and eventually this would take over my liver and lead to transplantation. For a period of time after receiving this news, I was frozen with fear and overtaken with emotion. For while the prognosis was 10-15 years until end-stage liver disease leading to transplantation, I heard, and equated this to death. My life changed seemingly overnight.
During this time, I quit my job as a creative director in Amsterdam and moved to Kosovo where my (now) husband was working for the UN. I had been practicing yoga for nearly 10 years by then, and started teaching it to UN staff and local Kosovar women. From there I went on to complete the Jivamukti teacher training and numerous healing touch therapies, which I continue to study to this day.
For the past 8 years, the long term prognosis of PSC has been at bay but at the same time a part of me, somewhere between a distant possibility that may not ever see the light of day, to something underlying my relationship with mortality and how I chose to live. It was never completely out of my mind, as my body shape changed daily depending on the up and down nature of the disease (“it is predictably the most unpredictable disease to man”, said my doctor last week).
During the past eight years I have looked at death in the eye on a few occasions, but I have savoured every sweet moment and feel so blessed to have loved ones and the great blessing of a son even through an emergency liver procedure that brought him into the world 7 weeks early. There have been episodes over the past three years that lead the doctors to believe that I am now approaching the end with my liver, and have urged me to consider transplantation.
Four weeks ago, I was a working yoga teacher passionate about yoga and teaching. I loved to treat people who could benefit with body work, and adored my role as an active mother and person in the community.
Then, out of the blue I endured three days of stabbing abdominal pain and was admitted to the Liver Ward. Having undergone days and days of tests, the doctor concluded that my liver was starting to fail.
Many of you know I’ve been to hospital before for what sound like wierd and wacky things and have always bounced back. Naively, I thought this would be the same story; I thought I would be teaching within a week of the hospital stint and continued to make plans as such. How little we know. Day after day of increasing pain, decreased energy and appetite told me that everything is different this time.
It has been a heartbreaking process, to watch everything I love slipping through my fingers, when all I can do is surrender, but it has already taught me a lot, and I suspect this coming time will be a time of reflection, growth and letting go.
Last week when I returned to the doctor in a worse state than I had left the hospital, the doctor told me I was eligible for a transplant and would likely get on to the waiting list rapidly. I had my first glimmer of hope that I might live. And things are starting to move forward. In a few weeks I will go in for an in patient week where they with run all kinds of tests and decide if and where I am on the list. From there the most difficult time will follow: the wait. Months and months of waiting for the call, could be 6 months, could be 18. When in this much pain, I imagine I will be crossing off the days one by one.
In the short term, I am doing all I can to remain positive. Friends and families have shown up to help out and be by my side, I think often to all the other beings in the world who endure so much more hardship than myself, with no end in sight, with no hope. And I remember how lucky I am, to have a family who love me, to have the mental strength to carry on, to find small amounts of humour where afforded.
So, if you see a shadow of me in the street, walking slowly and yellow, please don’t feel sorry for me, or be scared to say hello. That one hello with a smile could make the rest of my day.
I’m posting this in honesty, because I want to share it with the community, and who knows, someone may be going through the same thing.