The Seward Phoenix Log - News of the Eastern Kenai Peninsula since 1966

By Tommy Wells
Seward Phoenix LOG 

Former Alaskan in battle with rare disease

 

When Joe Nash was living and working in Alaska, he enjoyed time spent as a dog handler for Iditarod musher Aaron Burmeister, playing basketball and spending hours fishing. Now, he just hopes to walk to another sled dog race or see another salmon pulled from the water.

A former marketing executive for Alaska Newspapers Inc. with the now-defunct Bering Strait Record in Nome, Nash was diagnosed a few weeks ago with a rare form of Atypical Pyoderma Gangrenosum (PG) by physicians at New Orleans' Tulane Medical Center. According to one of his doctors, only 39 other people in the United States are currently dealing with the disease, which is closely related to a form of flesh-eating bacteria. It has affected Nash in multiple sites on and in his body.

"It is a scary situation," said Nash, who now resides in Louisiana with his wife, Melinda. "You know, you just can't take life for granted ... you don't know what will happen tomorrow."

Despite his condition, he says, he takes comfort in support from his wife and other family members and friends-but most of all, from a deep belief in God.

"The amazing situation is God put me here and He will get me out," he said. "What does that mean? I know I'm either going to get better and get out of this hospital, or I'm going to go home with Him. I guess we just have to wait and find out which one He has planned for me."

"When I broke my back I thought I knew what a 10 was on the pain scale," he said. "This is 10-fold what the pain was. I'm telling you, when they were in here taking the bandages off I wasn't moaning, I was crying."

People with Pyoderma Gangrenosum develop ulcers that form as deep, pus-filled sores on the skin, primarily on the legs, as well as on internal organs.

Nash said he first sought medical advice after noticing a small spot on his arm in January. From there, the spots and small papules spread to his legs and formed multiple lesions and large dark areas of necrosis in which the flesh was being eaten away.

Nash said physicians initially thought the condition was related to cancer that had been found when he broke his back several years earlier while moving a hay bale, but tests showed that the cancer was still in remission. After treatments for a series of seemingly unrelated symptoms-swollen legs and a high temperature, chest pain-doctors determined that his condition was much more serious.

"Really, I thought I was having a heart attack," Nash said. "But they ran every kind of test you could on me and ruled that out. We now know that was a sign of PG beginning on my internal organs."

He singles out Dr. Rebecca Soine, his dermatologist, and oncologist Dr. Jack Saux for referring him to a specialist at the Tulane Medical Center, where he was admitted on the evening of June 27 and where he remains today, receiving treatment for PG.

Dr. Soine "is one of the smartest and most compassionate doctors I've ever known," he said. "She did a lot of things on her own to help me. Dr. Soine is the one that called me at home and told me I needed to get to the hospital."

Nash doesn't know what the eventual outcome will be. There have been cases in which people with the condition have survived with scarring and loss of mobility and there have been some in which the outcome was worse. What he does know is he hopes his situation can help others.

"I hope Tulane Medical Center is able to use what they learn in treating me to help someone else in the future," he says, "so that they may not have to endure the same thing."

A GoFundMe account to help with medical expenses has been created for Joe and Melinda.

 

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