Now What?

Ten years ago, when 72-year-old Morton Foxe went in for a “simple” physical exam, the news he received was anything but simple. Morton, a World War II veteran and retired engineer, was shocked to learn he had chronic kidney disease (CKD).

“I was healthy,” stated Morton. “I thought to myself, ‘how could this be? I am healthier and more active than most people my age.’”

In fact, Morton was very active indeed. He played tennis twice a week with friends, kept very socially active, and even volunteered in his local community. He thought he was at the top of his game – was it about to be called off on account of rain?

Luckily, Morton’s kidney disease was diagnosed as mild and slowly moving. His doctor told him he would have at least a few years before he would have to start dialysis. These years, he thought, would allow him the time to figure out his answer to the most dreaded question of “now what?”

Knowledge is Key!

Morton chose to learn. To gain as much knowledge about kidney disease as he could, he realized he would have to do it on his own. His two children lived far away – too far to be of immediate help to Morton. In all actuality, Morton realized nobody in his family had ever been diagnosed with kidney problems before this – he was on his very own.

He began collecting information from various kidney-related organizations, Web sites and books; although little information was to be found on prevention and maintenance of early kidney disease. Morton became easily frustrated by all the information pointing toward the inevitable need for him to begin dialysis – one thing that worried him more than anything. Yet Morton remained calm.

He slowly began teaching himself about the kidneys – where they are located, what they do, etc. Morton even thought it would be in his best interest to begin learning kidney-related terminology to better understand his medical condition. Words that could be intimidating to someone unfamiliar with kidney disease now seemed clear. And clarity, even if it was just a little, was key.

Coping with Kidney Disease

A few years later, a few Web sites searched, and many books read, Morton came across a study being performed by Mackenzie Walser, MD, a professor at Johns Hopkins University School of Medicine in Maryland. It was a research study incorporating a very low-protein diet, supplemented by either amino acids or ketoconazole (a drug that treats infection caused by a fungus) in people with kidney disease. The goal was to bring one’s blood pressure down (as most people with kidney disease suffer from high blood pressure – Morton included) and find a proper treatment program to delay the need for dialysis.

As five years came and went, Morton did well on his diet. He remained very optimistic, that was, until more bad news arrived. The study had been terminated after Dr. Walser’s retirement. And although the study was mentioned in Dr. Walser’s book “Coping with Kidney Disease: A 12-Step Program to Help You Avoid Dialysis,” Morton found himself back at square one.

At the age of 83, Morton began looking into his options and, with intense pressure by his local nephrologist to begin dialysis, he decided he needed to seek a second opinion.

“When something isn’t right for you, don’t give in,” urged Morton. “There is nothing wrong with seeking a second, third or tenth opinion when it comes to your health. You have to follow your own instincts.”

Morton emphasized the importance of finding a nephrologist with whom you can speak to freely without inhibition.

“Patient-to-doctor communication is key to your health care,” said Morton. “You have to find a nephrologist who considers your views and concerns and is willing to work with you on making decisions and choosing options.”

Morton went back to Johns Hopkins for a second opinion, where he learned he was not uremic (producing excess nitrogenous waste products in his blood) and was still doing relatively well for someone his age. He decided to stay his course – stick with the supplemented very low-protein diet and active lifestyle.

A New Wealth of Information

It was just recently that Morton said he noticed a huge swing in the amount of helpful information for people in his shoes. He found some of the most helpful information about coping with kidney disease on AAKP’s Web site (www.aakp.org) and at our 32nd Annual Convention in Las Vegas.

“I liked attending AAKP’s Convention,” emphasized Morton. “It was very helpful to meet others going through what I was going through, and I can’t tell you how much valuable information I learned and was able to take back with me.”

Currently living in Silver Spring, Md., Morton says he is hopeful about the future. He enjoys keeping active and busy in his community and volunteers whenever he can find the time.

Morton is currently determining the best time to begin dialysis treatments. He has even tossed around the idea of talking with a transplant nephrologist about the possibility and advisability of receiving a kidney transplant. At this point in time, all options seem to be open to Morton.

When asked if he had any advice for those recently diagnosed with kidney disease, Morton’s voice grew excitedly stronger.

“I would tell them to join AAKP immediately,” said Morton. “All I really wanted was some good information on living with kidney disease – not having to go right into dialysis. I wanted tips, recipes, health care advice… those were all hard to find at the time, but AAKP seems to have some great information and advice.”

We couldn’t agree more! 

This article originally appeared in the December 2005 issue of Kidney Beginnings: The Magazine, Vol. 4, No. 5.

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