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Satisfaction in Small Measure

By all accounts, this week was an important week. This evening I returned home to my beautiful family without pain, and have remained pain free for the past two days. A triumph.

On Wednesday, I had a procedure that enabled the doctors to improve my quality of life by opening up a stricture ( a closed passage way) in the common bile duct, a large drain pipe for bile moving from the liver to the digestive system.  This is the most basic nature of my disease, PSC; it clogs the bile ducts until they scar, and eventually takes over the liver in the same way. One reason I look so yellow is because the clogged bile ducts prevent the bile from moving through the digestive passage, instead forcing it into my bloodstream.

It’s amazing what modern medicine can do. The doctor went down my throat with a little camera and some contrast dye, saw the stricture, and then took a microscopic piece of plastic into the closed duct and dilated it, forcing the stricture open. Viola!

The last two days since the procedure, I haven’t had the same pain, my appetite is back and I’m a little less yellow. How wonderful. And then, enter, the mind.

The key in staying well is not getting ahead of myself. When I start to feel better, I start to plan. I start to imagine a life where I might be at home for longer than a day or two before going back to hospital. I start to dream of learning and sharing and moving and living and loving all the things that make my life feel precious and full. And then I have to take a deep breath, and come back to the moment. It’s only been two days since the procedure, and four hours since I was discharged. Afterall, things might not go so wonderfully right…but they may not go so horribly wrong either. In life, things mainly just go, without too much control or involvement of me or anyone else.

The fact is that this stent is a stop-gap measure. PSC is cancerous in nature and it’s like having a ticking time bomb in my body. It can be diffused, muffled, prolonged, but the inevitable is that sooner or later my liver is going to go. Luckily, the wonderful doctors, surgeons, transplant coordinators and others who are on the transplant committee see this, and this is why they have put me on the list for a transplant. 

This means that with the stent in place I have some time to get as healthy and strong as I can be until I get the call, or locate a live partial donor for the surgery. I am satisfied and beyond overjoyed at the prospect of preparing for this large surgery at home where I can spend time with my husband, son, friends and family, where I can practice being present with my breath. Slowly, taking each day as it comes I will rebuild strength to prepare for all the hopes, dreams and plans that await me when life can return to normal, a day when I can travel again, move my body fully and freely, work and play and make myself useful in the world. I look forward to a day when I can collapse in my bed, not because I’m fatigued and weary and ill of health, but because my day has been full of wonder and joy. My perfect day: moving and melding my body, mind and experiences to aid other’s in their journey of finding their own satisfaction in small (or large) measure. Hallelujah.

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