WILTON — Aaron LeBlanc of Canaan was visiting his grandparents, Mike and Amy Frances LeBlanc last December when life changed forever for Aaron and his family.

As a result, a GoFundMe page has been established to help with unexpected expenses.

It started when Aaron told his grandmother he was going to bed and never getting up. She told him he was going home. His parents came and took him home not realizing what was soon to come.

Aaron was born prematurely and was a low weight baby. He has hydrocephalus and has a shunt to relieve the build up of fluids in his brain.

Aaron has had to have several shunt revisions, the last one about 13 years ago. Most of the signs in December at first pointed to the need for another revision.

Aaron’s mother, Amy Elizabeth LeBlanc said one of the first signs of shunt failure is violently throwing up. Aaron wasn’t experiencing nausea but was a really strange color.

“With shunt failure, they don’t want to see you unless you’re showing the exact symptoms, until you get sick,” she said.

His parents took Aaron to Maine Medical Center’s emergency room on December 12. His blood pressure was so high he was in immediate risk of a stroke.

It took several days to get Aaron’s blood pressure lowered. While much better, it still fluctuates with some days low and other times spiking.

At first doctors thought Aaron had bruised his kidneys. After an ultra sound, they discovered his kidneys were extremely small, atrophied and full of scarring.

Aaron’s doctor said there was 0.00% chance of his kidneys recovering. He had a fistula and central line port inserted. He started dialysis the next morning.

Aaron has dialysis every Monday, Wednesday and Friday. Each session lasts three to three and a half hours. He gets extremely tired, especially on Sundays, while waiting for the next session.

Because the kidneys have control over hormones, Aaron is at risk for other complications.

Aaron now has a special diet he has to follow. Jelly Belly jelly beans are much safer for him to eat than tomatoes, bacon and peanut butter.

Aaron has a daily food budget and he is the one to make sure he doesn’t go over the budgeted amounts for specific foods. He has had to give up Moxie, one of his favorite drinks.

Aaron was excited that the central line port was going to be removed on Tuesday, July 23. Doing so reduces the risk of infection considerably.

Aaron is now undergoing the process necessary to get on the kidney transplant list. He has met with the Maine transplant team. His next appointment will be with the surgeon, pre–surgery coordinator, pharmacy and nephrology. He has a dentist appointment in early August to ensure he has no cavities or infections.

Patients needing a kidney can be on the transplant list for years. With the number of available cadaver kidneys the wait can be 10 years.

Aaron and his family hope to find a living kidney donor. It is much more complicated to do so than most people realize. The person has to be incredibly healthy, have the same blood type and cross match. Those with high blood pressure or who have had kidney stones or other issues aren’t eligible.

There are programs which will match willing donors with other patients in need if they are not a match for Aaron. All expenses for donors are paid for, including medical and travel costs.

At 20, Aaron is in a strange subset of kidney patients. He’s the youngest person at his dialysis sessions, where the average age is 65 to 70. He has given his parents more say in his treatment than is usual with most young adults.

Through all of this Aaron has stayed upbeat and positive. He has never doubted that he’ll get a kidney, that everything will be okay.

Once a kidney is found there will be continuing medical and associated issues for Aaron’s family to deal with.

A GoFundMe page has been set up to help cover current and future costs associated with Aaron’s condition.

For more information please contact Aaron’s grandmother Amy Frances LeBlanc at 778-2685.

 

 

 

 

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