2013-11-01 / People

Student awaiting kidney transplant

By Alex Acquisto
Staff Writer


Ethan Houle poses with his yellow lab, Toby. Houle, 17, a senior at Kennebunk High School, was told in August that he must undergo a live kidney transplant. The news came after more than a year battling inflammation in his kidneys. The inflammation was caused by a routine bout of the flu. A benefit dinner and dance is being held for Houle at The Nonantum Resort in Kennebunkport on Saturday, Nov. 23 (Courtesy photo) Ethan Houle poses with his yellow lab, Toby. Houle, 17, a senior at Kennebunk High School, was told in August that he must undergo a live kidney transplant. The news came after more than a year battling inflammation in his kidneys. The inflammation was caused by a routine bout of the flu. A benefit dinner and dance is being held for Houle at The Nonantum Resort in Kennebunkport on Saturday, Nov. 23 (Courtesy photo) KENNEBUNK — Ethan Houle doesn’t fit the description most people expect for a kidney transplant candidate. A 17-year-old senior at Kennebunk High School, Houle is very healthy, admittedly eats no processed foods and leads an active, adventurous life, said his mother, Teresa Houle.

Pictures of the two of them on various outdoor outings — saltwater fishing, skiing, running for charities — are hung from the walls of Teresa’s business, The Total Look, a salon on High Street.

Approximately a year and a half ago, as Ethan and Teresa were preparing for a charity run to benefit multiple sclerosis patients, Ethan came down with a bout of stomach flu.

“Somewhere along the line, for some reason unknown, the inflammation from the virus settled in his kidneys,” Teresa said.

Since then, Houle’s condition has worsened significantly. The Houles visited Maine Medical Center, Boston Medical Center and the Mayo Clinic in Rochester, Minn., and he was prescribed a series of treatments, most of which did not facilitate a response from his kidneys.

What they were told, though, is that whichever virus had manifested itself in Houle’s kidneys had caused an autoimmune response.

“Typically when that happens, it means one has an autoimmune disease like lupus, but Ethan tested positive, meaning he doesn’t have an autoimmune disease,” Teresa said.

In late August they were told that Houle’s kidneys are a little more than 20 percent functional and that he will need a kidney transplant from a live donor in order to live.

In the meantime, Houle has lost most of his energy and has been forced to scrutinize everything he puts in his body.

“I drink just about a gallon of water every day. And I can’t have more than 1,000 milligrams of salt in a day,” he said. “People don’t realize how much salt is in their diets. If I was to get a sausage, egg and cheese breakfast sandwich from Dunkin’ Donuts, it would have something like 1,200 milligrams in it,” he said.

In addition to his diet, Houle has been forced to take online classes, not necessarily because of fatigue, but “because his immune system is compromised, at this point,” Teresa said. “Most people don’t realize all that kidneys do for their body. I know we have learned a lot through this process,” she said. “I think most people just think of their kidneys when they’re destroying them at a bar, drinking alcohol,” Houle said. “For me, I can’t exercise very much because exercising causes proteins to build up in my blood, which have to be processed through my kidneys,” Houle said.

In order to be put on the donor list Houle must have 20 percent function or less in both kidneys, and because his functionality is just above that point, he is pretty much just waiting to get worse, Teresa said.

“If they take me off of the medicine, my kidneys would stop working,” Houle said.

His condition, then, has to worsen while he is on medication; however, that option, too, is dwindling.

“The side effects of his medicine are having adverse effects on his health, so he can’t keep taking that for much longer, either,” Teresa said. “We also want to do it before he turns 18, because the adult donor list is a lot longer,” Teresa said. “We hope to have the surgery by January.”

Together, they have started vocalizing Houle’s need for a kidney, which requires a certain verbosity that both are uncomfortable with.

“We’re usually pretty private people,” Teresa said. “We have always had an appreciation for giving back. It’s just uncomfortable because we’re used to being the givers instead of being the recipients. It’s different being on this side of things,” she said.

Houle’s blood type is A positive, thus requiring the donor’s blood type to be A or O.

“If I was a match he would have the surgery next week,” Teresa said. “It doesn’t matter so much (the donor’s) age as long as they are healthy,” Teresa said.

Doctors chose to have Ethan receive a kidney from a live donor because presumably the kidney would last longer. It also allows the option to find the healthiest match.

In an effort to raise awareness for Ethan’s condition the Houles are hosting a benefit dinner at the Nonantum Resort in Kennebunkport on Saturday, Nov. 23.

The theme is, “Experiences of Living Life,” and each raffle prize and silent auction item is an experience of some kind.

The items up for bid at the dinner range from saltwater fishing to skiing in the White Mountains — all activities that the Houles have either done or want to do in the future.

The band Straight Lace will provide the evening’s music. Tickets for the evening are $30 for adults and $25 for anyone of high school age or younger.

When asked if he can describe how this situation has affected him, Houle said, “I just try to keep my emotions at one level. If I think about it too much, I’ll freak myself out.”

Those who have heard Houle’s story and are interested in hearing more about the donor process can contact Roxanne Taylor, living donor coordinator for the Maine Transplant Program at Maine Medical Center.

“If someone is coming forward as a non-direct donor, meaning if they don’t know the candidate, we would keep that anonymous until after the surgery,” Taylor said.

When it comes to being a donor, said Taylor, “there are three big rule outs: 1. High-blood pressure and high blood pressure medication, 2. They can’t be diabetic, and 3. They can’t have a history of passing kidney stones.”

“Those are our right-off-the-top stuff,” Taylor said. “Each person is screened medically very carefully, we make sure they meet all the criteria, and we assess their risk from there.”

Every surgery has its risks, Taylor said, but “our whole evaluation process is designed to make sure that that person (the donor) would be healthy enough to survive the rest of their lives with one kidney.”

Having cancer is also not necessarily a disqualifiable factor, either, Taylor said. “We have had cancer donors before. It just depends on what type of cancer they had, when they had it, and how it was treated.”

Taylor can be reached at taylorm@mmc.org or by phone at 662-7185.

Payment for the donor’s surgery and Houle’s surgery is covered by the Houles’ insurance, Teresa said. The surgeries combined would cost approximately $500,000.

Those who are interested in learning more about live kidney transplants can visit www.mmc.org and search for Maine Transplant Program.

The Houles have also created a website detailing Houle’s condition and background. For more information on his story and how to donate, visit www.ethanhoulekidneyforlife.org. Businesses interested in donating to the Experiences of Living Life benefit are also encouraged to visit the website. The benefit begins at 5:30 p.m.

“Ethan has handled this remarkably well,” Teresa said as she put her hand on Houle’s knee. “We do have faith in God, and that has kept us strong.”

Want to comment on this story? Visit our website at www.post.mainelymediallc.com and let us know your thoughts.

Return to top