Date: Fri 16-Apr-1999

Publication: Bee

Author: KAAREN

Quick Words:

organ-donation-Lambo-health

Full Text:

Taking Up The Cause Of Organ Donation

(with photo)

BY KAAREN VALENTA

Pat and John Lambo of Sandy Hook are encouraging everyone to sign organ donor

cards as part of National Organ and Tissue Donor Awareness Week, April 18-24.

The Lambos know firsthand that organ transplants save lives. Sixteen weeks ago

John Lambo gave part of his own liver to his son Jonathan, 14, in rare surgery

known as living-related transplant at Columbia Presbyterian Hospital in New

York City.

"We want to thank everyone in Newtown for all the support that we have

received," Pat Lambo said. "So many people have sent us their best wishes and

offered to help -- the response has been overwhelming."

Jonathan Lambo went back to school last Friday for the first time since his

surgery. Although he has developed diabetes and is still taking 32 pills a day

to prevent his body from rejecting the new liver, Jonathan intends to attend

classes at the middle school for a few hours a day until the end of the school

year.

"I'm ready to go back," he insisted in an interview last week.

Jonathan can reel off the names of the drugs that he is taking: "prednisone,

Prograf, and Cellcept to prevent rejection; Actigal to promote bile flow,

nystatin to prevent thrush, and Septra to prevent pneumonia. Oh, yeah, and a

multivitamin, too."

It is not uncommon to develop diabetes because of the drugs that have to be

taken after an organ transplant. Jonathan is nonchalant as he explains how he

does a finger-stick blood test each morning, then injects himself with insulin

in his stomach, arm, or thigh.

"One of the side effects of his medication is high sugar," Mrs Lambo said.

"It's because of the steroids that he takes for anti-rejection. But he does

what has to be done without complaining."

Soon after Jonathan was born, the Lambos knew that he eventually would need a

new liver. He was born with a potentially fatal liver disorder called biliary

artresia and, as an infant, underwent surgery that the doctors said would be

only a temporary solution.

But Pat Lambo admits that she didn't realize how complicated life would become

after Jonathan underwent transplant surgery on December 10.

"I had no idea," she said. "It was extremely ignorant to think we'd go in and

out (of the hospital) and have a normal life after that."

Jonathan has been hospitalized many times since his surgery because of

episodes of rejection.

"He was back in once for eight days, another time for five days, and four

times for two or three days," Mrs Lambo said. "The doctors told us they

expected him to be able to return to school 12 weeks after the surgery, but it

has taken longer to get him to that point."

Mrs Lambo said that when Jonathan was in the hospital two weeks ago, he was in

a room across the hall from another Newtown youth, Thomas Ward, 13, who has

been battling infection in his leg after a cancerous tumor was removed in

surgery last August.

While Thomas still has to make weekly trips back to Columbia Presbyterian,

Jonathan now is able to have blood tests done at Danbury Hospital's satellite

lab in Newtown.

"We have to constantly monitor him, but we got the diabetes under control and

he gained five pounds in the past week," Mrs Lambo said.

The Lambos moved to Sandy Hook from Freehold, N.J., in 1994, settling into a

house on Country Squire Road with Jonathan and their two other children,

Andrew, who is now 13, and Megan, 10. Everything seemed to go well until last

August when Jonathan suddenly became very jaundiced, his skin turning yellow,

a signal that his liver was not functioning correctly.

The Lambos were told that the time had come to either place Jonathan on the

list for an organ transplant from an unknown donor, or to consider a

relatively new procedure, a living-related transplant. The first

living-related liver transplant was performed in 1989 and fewer than 400 have

been done in the United States since then. But the chances of getting a liver

from an unknown donor were slim.

"There are 123 liver transplant centers in the United States and as of

November 23 there were 11,663 waiting for an organ transplant," Mrs Lambo

said. "Can you imagine being one of more than 11,000 waiting for a donor

liver?

The Lambos were fortunate that Jonathan had the same blood type as both of his

parents, so both could be considered as donors. Then they learned that John

Lambo was among the 20 percent of the population that have livers which are

large enough to be used for the transplant surgery.

"My husband could be the poster boy for living-related donors," Pat Lambo

said. "In six weeks he was back at the gym. He did awesome. It was a painful

recovery after surgery and five days in the hospital."

"I told Pat that if I had known it was going to be so painful, I would have

let her do it," Mr Lambo said, laughing. "But my liver grew back to its

original size within two weeks. I had the surgery on a Monday, was home by

Saturday, and was back working from home the following week."

An MRI (magnetic resonance imagery) test after the surgery showed that

Jonathan's new liver "fit like a puzzle piece," Mr Lambo said.

Pat Lambo returned to work last week at her job at Cendant in Danbury. Her

husband still works at home several days a week and travels to his office in

New York on the other days.

"My company has been wonderful," he said. "They were extremely supportive when

I told them, on the first day of my employment with them, that I would have to

take time off for the surgery."

The cost of the transplant surgery and the other medical bills have been

largely covered by insurance, partly by the COBRA (continuation of benefits

coverage) from Mr Lambo's previous job, the rest by his current insurer. Pat

Lambo still has a carton of medical bills to sort out because of the confusion

of switching insurance carriers in the midst of the treatment.

The Lambos agree that if people want to help, the best step to take is to join

the national organ donor program.

"We're telling our friends that you better have your pens ready because we're

sending out the cards," Mrs Lambo said.

Note: Organ donor cards also are available at The Drug Center, 61 Church Hill

Road.