By Kathryne Gilbride
The raised mark across attorney Anna Maiuri’s side nearly matches a similar 18-inch scar on her husband Joseph’s abdomen. The two scars represent the devoted Italian family’s struggle to save their son, David, from a fatal kidney disease. Joseph donated a kidney to his son when the boy was seven. Thirteen years later, Anna did the same.
“We are rare,” says Anna, “We don’t know anyone that’s received a kidney from both parents.”
At age four, David was diagnosed with Focal Segmental Glomerulosclerosis (FSGS), a disease that attacks the kidney’s filtering system. Over the next few years his kidneys continued to degenerate.
Anna was pregnant with her daughter and enrolled at Wayne State Law School when David’s kidneys took a turn for the worse. He interrupted her work on a law brief, complaining of a full body cramp and screaming in pain.
“The kidneys were in a gradual shutting down mode and that was the breaking point,” recalls David.
Detroit Children’s Hospital staff informed Anna that David suffered from a sudden loss in kidney function.
“They said they had never seen a person with a calcium level so low that had not had a heart attack,” says Anna.
David was hospitalized every three weeks to drain fluid from his body. Anna refused the option of dialysis, an artificial replacement for lost kidney function in people with renal failure.
“We never wanted him to be on dialysis because dialysis is not a sustainable solution and can have numerous side effects,” says Anna.
Faced with a decision few families ever face, Anna and Joseph contemplated which of them should donate a kidney when their son’s organs failed. The couple agreed to wait for test results and choose the more compatible parent. To their dismay, the doctors at Detroit Children’s Hospital saw neither of them as compatible enough and refused do a living related transplant.
“There are 6 antigens that you try to match,” says Anna, “and in our case David had three from his mother and three from his father. So you still had three that didn’t match. As they put it we were ‘equally bad.’ At that time, we were too high a risk.”
Finding the scenario unacceptable, the Maiuris’ ventured to the University of Michigan Hospital where they were told a kidney could be transplanted.
Distressed, anguished and exhausted, Anna finished her first year of law school.
“I had two professors who were extremely encouraging,” says Anna. “I ran into Professor Findlater several months ago and she told me that she continues to follow my career. The counselor at the law school told me to quit because grades were very important and I could never make it. But two encouraging professors told me not to listen, and that I could do it, and got me through.”
That fall, both of David’s kidneys unexpectedly crashed. He needed an emergency transplant. Anna was compelled to quit law school to tend to her son. She eventually finished her degree in four and a half years instead of three.
Although neither Anna nor Joseph was a perfect donor for David, they decided for a range of reasons that it was better for Joseph to donate.
“The primary reason was financial,” says Anna, “If Joseph gave a kidney, he would still get paid from work, and I could take care of everyone. But if I gave a kidney, Joseph couldn’t get off of work, he still had to make money, and there would be nobody to take care of everybody.”
Joseph’s kidney was so enormous the doctor’s removed a part of his rib in order to get it out resulting in an 18-inch scar. Both of David’s infected kidneys were removed, a rare and risky procedure.
When David’s body began rejecting his father’s kidney nine days later, the Maiuris’ at first felt defeated, but in the end never gave up hope. The hospital put the boy in intensive care, administering him a drug to kill his T-cells.
“His fever would spike, because of the sudden cellular breakdown,” says Anna. “In fifteen minutes he would go from a normal temperature to a hundred and five.”
Spending that winter isolated in the hospital while his body tried to fight off the very organ that could save his life, David recalls wishing for windows and to be outside.
“You know what is amazing about intensive care,” says David, “is how many times I looked at the clock and didn’t know if it was morning or night, and how many times I asked nurses. Because there are no windows in there, there is basically nothing, it’s all the same, always.”
The Maiuris’ spent three months living at the hospital, refusing to leave David alone. The family received excellent treatment from doctors, nurses and staff, says Anna. In return, Anna kept them all well fed.
“My mother is a fantastic Italian cook,” she says, “I would share her food with all the nurses and the doctors. So if I needed something they came running. They appreciated our efforts to acknowledge their hard work.”
To everyone’s horror, David acquired Mononucleosis while in the hospital. But as it turned out, the dangerous viral infection ended up saving his life. The virus required doctors to withdraw an immunosuppressive drug prescribed to help the body accept the transplant. Once removed, David’s kidney began to function better and doctors realized the medicine was the original reason for the kidney’s lackluster performance. Within days of adjusting the medication, David was finally released from the hospital.
His wish to go outside was granted.
“We never treated him differently because he had a transplant,” says Anna, “He did everything the other kids could do. Even though he got his transplant in second grade, he got all A’s on his report card that year.”
David’s healthy lifestyle allowed his father’s single kidney to function properly for 13 years, twice the time doctors had anticipated. But when he was attending Michigan State University, his biopsy results showed a second transplant would be necessary.
“It was pretty clear I was getting sick again,” says David, “My skin was turning yellow and I was tired all the time. Even my friends noticed. The doctors knew that when I went through puberty the kidney would be stressed.”
As she had when the first transplant was performed, Anna put her law career on hold. Miller Canfield supported her throughout the process, providing her the time she needed to manage the family crisis. Miller Canfield, in fact, continues to show support — the firm is participating in the upcoming ‘Workplace Partnership for Life’ program, hosted by Gift of Life. (See side bar for more details on how to participate).
For David, who returned to the University of Michigan to have the second transplant performed by the same surgeon who did the first one, the procedure went smoothly.
“The first transplant took about three months,” says David, “This transplant I went in on a Friday morning and was out by Sunday afternoon. I never went back.”
Anna’s painful recovery from donating took much longer. The average six-week recovery took her eight weeks, four times as long as her husband, Joseph.
“Being a lawyer, I’m so risk averse,” says Anna, “I decided since they had been doing the open procedure for about 50 years and had only been doing the laparoscopic for three at that point, I decided to choose the 50-year, tried-and-true procedure because the risks were much less.”
The open surgery is more invasive and lengthy than the laparoscopic, increasing recovery time. According to Anna, the intense pain and sensitivity she suffered felt uncommon. She was frustrated because doctors refused to acknowledge its seriousness. After finally investigating, doctors diagnosed her with nerve damage.
Thanks to his parent’s willingness to donate, David is now 28 and a successful commercial banker working for Crestmark Bank, just across the street from Anna’s office at Miller Canfield. David married his wife Megan last year, a schoolteacher in Troy.
Today Anna and David share more than just an organ. They share a passion for promoting donors and are both active in the National Kidney Foundation of Michigan (NKFM).
“Michigan ranks 42nd in the nation,” says Anna of organ donators, “and to reach the national average of registered donors, Michigan must add one million new residents to the Donor Registry.
This is not good. Kidneys are the most requested organs.”
David focuses his free time on encouraging kidney donors.
“I can’t stress enough how fortunate I am that I was never on dialysis,” says David, “that’s why it’s so important to have donors.”
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