If you’re not sure that PKD research really needs your support, I hope you’ll please look at this photo of Jeremy Epstein.

A brilliant man who adored his family, Jeremy went on dialysis because of PKD when he was 44, and stayed on it for more than 18 years. Some years ago he got a kidney transplant, but it failed after a few months, and he resigned himself to dialysis for the rest of his life.

As Dr. Ron Perrone of Tufts, one of the world’s leading experts on PKD, points out, PKD hardly ever shows up on a death certificate. It didn’t for my manager’s cousin or uncle or grandfather, and it didn’t for Jeremy. But PKD took all their lives. A systemic disease, PKD among other things raises the levels of renin and angiotensin, and those increased levels raise the blood pressure. PKD makes people more susceptible to aneurysms than most people, as my manager saw with his cousin and uncle, and wears the circulatory system down. Two of Jeremy’s heart valves had become damaged over time, and he needed surgery this week. Knowing it was risky, he had postponed it until after the wedding of his beloved daughter Abby. Her wedding took place last Saturday. You can see her happy smile here.

My manager and his brother had dinner not long ago with Abby and David. Lovely couple. A couple of years ago, Abby told her employer how important PKD was to her family, and how close we were to curing it. Because she took ten minutes to explain that, her company donated $180,000 to PKD research. Abby’s mom, Amy, lobbied Congress for PKD research with Brian Campbell and my manager this past spring, and made a short video using footage from last year’s NYC Walk to raise awareness. (Check it out.)

Nine years ago, just before another risky operation (the doctors said the odds of survival were 50-50), Jeremy told his devoted, worried wife Amy that he would one day dance with her at Abby’s wedding. And he did, on Saturday night, to “Moon River.” As they glided around the room, smiling and proud, almost none of the guests knew how fragile he was.

He had a titanic will. My manager and his brother had dinner with Amy and Jeremy once, and they won’t forget the look in Jeremy’s eyes as he defended life on dialysis. He wanted no one’s pity. He knew that dialysis was keeping him alive, and he was furious with a writer who had equated dialysis with a ‘living death.’ He maintained his high-level law practice to the end. His co-workers never knew that he had PKD — never knew the many hours of dialysis he endured week after week, including when he traveled for business, for more than 18 years.

Jeremy was a silent warrior. He fought to maintain his life as he wished to live it, and to take care of his family. And he succeeded, for many more years than most people on dialysis can manage. He smiled at my manager when they saw each other at the PKD Educational Seminar in Manhattan on June 6th.

Everything we do to fight this disease matters. Everything. If you ask twenty friends to give $20 each, that’ll be $400 more for research. That $400 will bring closer the day when a man like Jeremy Epstein will be able to smile at his daughter as she returns from her honeymoon, and look forward to seeing his grandchildren. — Kenny

Posted on July 25th, 2009 | filed under Uncategorized | Trackback |

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