Wednesday, March 12, 2008

It's a small EPS world

Several months ago, I stumbled across an Internet reference to a book entitled Barry's Stolen Life. The book was written by Linda Sweetland about her 28 year old son Barry who died of complications from kidney disease in 2003.

What made me take a second - and then a third - look at this reference was the startling series of coincidences between Barry and Chris' stories. In the end I ordered a copy of the book for myself and read it in one sitting. The book is self-published and is - as many such projects are - a labour of love rather than a literary masterpiece.

Like Chris, Barry was born seemingly healthy but began to show evidence of underlying problems at a young age. The coincidences begin: both were diagnosed with Reflux Nephropathy at a young age; both had surgery in an attempt to correct the problem; both were ultimately diagnosed with End Stage Renal Disease; both underwent hemodialysis, kidney transplants, and peritoneal dialysis; both suffered through peritonitis; both lived active and happy lives; and both married their sweethearts shortly before their sudden deaths. Barry and Becky were married for little over two weeks. Chris and I had nine months.

It was complications from the relatively innocuous peritoneal dialysis that caused them both to develop a rare condition called Encapsulating Peritoneal Sclerosis (EPS). The condition seems to mainly occur in patients who have undergone peritoneal dialysis for longer than five years. The statistics rise the longer the treatment is used – but even so the rate hovers around a lowly 3% of dialysis patients who develop EPS. Chris' team of nephrology specialists had seen less than a handful of cases over the span of 20 years in the field.

Even specialists studying EPS do not yet understand what triggers it in some patients but not others. EPS causes the normally tissue-thin peritoneal membrane to become thickened and impenetrable, making the fluid exchange of dialysis impossible but also slowly encasing the digestive organs thereby cutting off nutrient absorption.

Chris had undergone several surgeries and was receiving experimental drug therapy for his EPS – we’ll never know if he would have been cured. Barry suffered terribly from the condition and in my heart I am relieved that Chris (and I) never had to endure such distress. He never expressed regrets for having chosen peritoneal dialysis as a treatment method. He always spoke of the freedom it gave him - to travel, to work, to live.

According to the book, a percentage of the profits from its sale will be donated to research into the condition. The International Society for Peritoneal Dialysis is working with several specialists to create an international EPS registry to aid in the research of this rare condition.

You may be wondering how I could read Linda's book. I’m not sure. I’m a reader, a learner, by nature. It’s one of the ways I understand life and cope with issues I don’t understand. As well, the coincidences were almost freakish and I wanted to see how someone else had coped with such similar experiences. We're all learning and that doesn't always mean choosing the easiest path.

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