Marianne Supino is facing the biggest challenge of her life for the second time.
She needs a kidney transplant, again.
This is familiar territory for the 60-year-old Lynnfield resident, who at age 15, discovered she had kidney problems. While a high school student, a biopsy revealed there was something wrong with the filtering system in her kidney.
“I hung onto that kidney for nearly a decade because I slowed the disease with medication and didn’t even need dialysis,” she recalled.
At age 23, she underwent a successful kidney transplant at Massachusetts General Hospital and life was good, she said.
The new kidney worked well for 30 years.
But that all changed in the summer of 2012 when at her York, Maine vacation home, she couldn’t walk a straight line and was unable to swallow pills.
“I thought I had Lyme disease,” she said. “I was throwing up and my head was hurting. I was rushed to the ER at a hospital in York, and a CT scan showed I had a serious problem. I was rushed to Mass. General for emergency brain surgery and spent 45 days in the new Yawkey cancer treatment building.”
While the surgery and a combination of chemotherapy and radiation removed the tumors, making her cancer-free, the one drawback was she had to stop taking the drugs to keep her transplanted kidney in top shape.
“Once I had the brain surgery, I had to stop my drugs to keep my transplanted kidney going, so I had to let the one kidney go,” she said.
Within eight months, Supino was on dialysis. The time consuming process removes waste, salt and extra water to prevent them from building up in the body and keeping a safe level of certain chemicals in your blood, such as potassium, sodium and bicarbonate. She is at a Wakefield clinic four times a week for about three hours each day.
She’s been cleared for a second transplant and in April began the search for a donor.
“My doctors told me to let the world know I need a kidney and that’s why I am shaking all the trees on social media and pounding the pavement to get the word out,” she said.
If donor cannot be found, Supino will spend the rest of her life on dialysis.
“It’s not fun,” she said. “Each time you go for dialysis it deteriorates your body. It’s like walking on a tightrope.”
There are more than 93,000 people on the kidney transplant waiting list and that number is growing, according to the Living Kidney Donors Network.
Patients are prioritized by how long they’ve been on the waiting list, their blood type, immune system activity and other factors. About 80 percent of the people on the waiting list are on kidney dialysis. The longer a person is on dialysis and has to wait for a transplant, the short and long term success rates are negatively affected. On average, receiving a kidney transplant can double someone’s life expectancy.
While 80 percent respond yes when asked if they would be an organ and tissue donor, only 30 to 40 percent of Americans designate themselves as donors on their driver’s licenses or on state donor registries. For those who don’t designate themselves as a donor, the decision to donate rests with their families who can just as easily deny rather than permit the hospital’s request to have their loved one’s organs donated.
A staggering 5,000 people die every year waiting for a kidney transplant and another 5,000 are taken off the list because they are no longer healthy enough to receive one.
For more information, go to https://www.caringbridge.org/visit/mariannesupino.
