Just a Bump in the Road

Linda had her surgery three days ago and came through it very nicely. It was a more complicated surgery than she's had in a couple of years, involving three incisions and taking most of four hours. They call it an "ax-fem" bypass, in which a graft is run from near the shoulder, down the side, and into the leg to counter arterial blockages which have essentially kept her lower left leg free of circulation for a year or so. Thanks to the wizardry of the vascular surgeon, Dr. Robert Moglia, she is already walking comfortably. Reunited with its blood supply, the leg is warm again and free of pain, and she can touch it again without wincing. She ought to be fully recovered by the time we start our big trip five weeks from today.

She's an old pro at sailing through operations. Since the start of 2006, this was her thirteenth operation, and she has the recuperative powers of a cartoon character. Though she's had plenty of Acme safes dropped on her, she hasn't skipped any more beats than she's had to. Her superpower is resilience. She doesn't take illness personally. Major surgery is just a bump in the road, the next step to traverse in the wild, bumpy roller-coaster ride of ESRD--end stage renal disease.

We have created this blog first of all in order to share our upcoming trip with anybody who has a passing or active interest in dialysis. It will tell the story of a 31-day, cross-country drive that includes a dozen dialysis treatments "on the road," through the eyes of a dialysis patient and her caregiver. It was Linda's idea. She hasn't found anything written from the point of view of a patient, and she wanted to provide that front-row view of this trip. So the blog's main role is educational, to provide a record of the day-to-day nuances of kidney disease and dialysis. Another goal is to show how to survive and even thrive while on dialysis. That's what Linda has done, and I hope that her story will inspire people we've never met as much as she inspires people who know her. I also want to write about the places we see, the friends we visit and the strangers we meet, the logistics of the trip, and the things we celebrate (including our anniversary and Linda's birthday).

It has been our experience that people who do not have a direct experience of dialysis know almost nothing about it. I've discussed dialysis with highly educated people whose notion of it wasn't even in the same ballpark as the reality. If you haven't seen what a dialysis center looks like, or what the machine looks like, or what your loved one looks and feels like when hooked up to it, or what the process actually does, then come along with us on our trip. It's worse than you think, and not as bad. Some days are better than others, and some are not good at all. In other words, it's like anybody else's life--except that it needs to be saved by a machine every week.

First Things First

I can't wait to leave on our trip, as you know nothing is easy, not for me anyway. I won't let it stop me or even slow me down. I just came home from a doctor's appointment, a vascular surgeon. I need to have some surgery on my leg, I've needed it for some time, but due to other issues it was put off. Now just 45 days, no by the time I have the surgery 37 days till we leave for a long-awaited, month-long, almost cross-country trip. The surgery I'm having is an ax-em on my left leg, where Dr. Moglia ( the best surgeon ever) will make a small incision under my collarbone and thread a graft down to a blockage in my left leg. I make it sound simple, it may be a little more complicated than I describe but you get the idea. Anyway come on September 1st, that's when we will have our little Toyota loaded and ready to go. I will be in the passenger seat the night before, waiting for Gabriel. More to come soon, I probably should mention I have renal failure and will have to get a dozen dialysis treatments on the trip but I expect to have some wonderful and challenging experiences and to meet some great people. Stay tuned.