With each chirp of the telephone, Linehan hopes to receive the news that led her and her daughter, Laura, to move to Jacksonville, Fla. — that Laura has a liver donor.
Ann Linehan was speaking on the phone from her new two-bedroom apartment in Jacksonville, Fla. when she abruptly stopped in mid-sentence.
“Can you hold on?” she asked, leaving the conversation without waiting for an answer.
She returned to the phone moments later, unnecessarily apologizing.
“My phone started to ring and it could have been the hospital. God, I never want to miss that call,” she said. “Every time the phone rings, I jump out of my skin.”
With each chirp of the telephone, Linehan hopes to receive the news that led her and her daughter, Laura, to move to Jacksonville from Melrose, Mass., on Jan. 4 — that Laura has a liver donor.
“This is my miracle that I found Jacksonville,” she said. “We’re the lucky ones, that we were able to have the means to get down here and we found it.”
Laura, 20, received a liver transplant at the age of 2, more than a year after doctors discovered she had tyrosinemia, a metabolic disorder in which the body cannot effectively break down the amino acid tyrosine, inhibiting proper development and possibly leading to liver and kidney failure, nervous system problems and an increased risk of liver cancer.
After the transplant, life continued as normal for Laura — until a letter arrived from Children’s Hospital just as she finished the fifth grade.
Laura had been given blood from donors infected with hepatitis C. She would need to be tested.
“Sure enough, she had hepatitis C,” her mother said.
Laura twice underwent treatment consisting of a regimen of injections and oral medications, which her mother called “horrible” and likened to chemotherapy.
“It’s supposed to be 40 percent effective. It didn’t work either time,” Linehan said.
“Hepatitis C typically takes anywhere from 20 to 40 years to become active. It’s a very slow disease. But because she’s immune suppressed, it kicked in faster with her. It has destroyed her transplanted liver, making it necessary for her to have another transplant.”
So Laura began waiting again for a transplant, her name put on the liver transplant waiting list on Oct. 10, 2006.
Two months later, on Dec. 22, one of Laura’s best friends, who was extremely sick and also needed a second transplant for a different reason, was lying in the operating room after finally finding a donor.
She died on the operating table.
“After watching her friend die, her mother had always talked about giving Laura a piece of her liver and they couldn’t do it,” Linehan said. “She got so sick that she couldn’t make it through the surgery. I just knew that after that happened that we had to find another solution.”
Coincidentally, a friend of the family originally from Rhode Island was visiting his parents when he came across an article in the Providence Journal, written by Los Angeles Times reporter Alan Zarembo, titled “Life or death depends on where you live.”
The article detailed how the U.S. has 58 territories for organ transplants. Most organs donated in those territories are only used for patients waiting in those areas, even if patients with a more immediate, critical need are outside that territory.
The article also told the story of a New York man who had been waiting four years for liver and kidney transplants. He moved to Jacksonville and received both in two weeks.
Linehan brought the article up to Laura’s doctors, who confirmed the inequity in the organ transplant system and said they would “highly” recommend moving elsewhere to get a transplant more rapidly.
“They also said if anybody on this team needed a transplant we would send them to Jacksonville,” Linehan said. “We did the research that was necessary, the referrals, and came down here last spring. The doctors here [at the Mayo Clinic] said yes, she was a candidate, but wasn’t quite sick enough. They wanted us to wait until she got a little bit sicker and then come back.”
Transplant candidates are beholden to their MELD score — the Model for End-Stage Liver Disease that measures how effectively the liver excretes bile; the liver’s ability to make blood clotting factors; and creatinine levels which measure kidney function, often associated with severe liver disease.
The MELD scores range from 6 to 40 and have four categories: a score up to 10, scores between 11 to 18, scores between 19 to 24 and a score above 25, those in most severe need.
Laura’s score is currently 19, Linehan said.
“She probably sleeps 20 hours a day. She is holding about 35 to 30 pounds of fluid. She has no life,” she said. “She’s just waiting for the phone to ring. She’s very uncomfortable, she’s in a lot of pain, she’s exhausted and she’s not living like any other 20-year-old that I know. But she never complains and she feels terrible that she has disrupted our family. We would just do anything for her.”
While Laura’s current condition has obviously worsened and her MELD score is up to 19, staying in Boston still meant a long wait for a transplant.
“In Jacksonville, because they have so many more organs, they can transplant typically between the score of 15 and say 19 to 20,” Linehan said. “In Boston, they’re transplanting in the low 30s, 30 to 35. The patients are so sick by the time they get a transplant they either they die waiting, they don’t make it through the surgery or there’s a much greater risk of a successful transplant recovery, especially the second time around.”
Massachusetts versus Florida
According to the Organ Procurement and Transplantation Network’s Web site, optn.org, 1,553 registrations are listed for liver transplants in Massachusetts, while in Florida, 2,941 registrations are listed.
However, Massachusetts only has one organ procurement organization (OPO) to nine transplant centers, while Florida has four OPOs to 10 transplant centers. The OPOs become involved when a patient is identified as brain dead — organs need to come from people whose hearts are still beating — and are therefore potential donors. The organization then coordinates between the potential donor’s family, the transplant center and the waiting transplant candidate.
Linehan said she was “absolutely blown away” when she visited Jacksonville last spring and asked the doctors about exploring using a partial transplant from a living donor.
“They said, ‘We think that’s a great idea, a great surgery, but we don’t do them here because we don’t need to. We don’t have a shortage of organs,’” she said. “I just couldn’t believe my ears. They have five times as many organs as Massachusetts General Hospital, and they have a much larger region.”
The multiple OPOs in Florida are one reason for the surplus, Linehan said, adding she believes they are more aggressive at identifying and getting organ donors in Florida.
“Mass. General did 42 transplants last year and the Mayo did 200, and the Mayo’s number is down a little bit because a new center opened,” she said. “They are transplanting when the patients are healthier.”
Linehan also said there is no motorcycle helmet law in Florida and, given their climate, there are more accidents resulting in potential donors.
She said her problem with the organ donor-transplant network is that not everyone has the wherewithal to simply move across the country to get a transplant.
“The big issue for me is the system is broken. They need to fix this,” Linehan said.
“There’s no reason why they can’t transport the organs around the country. Families should not have to completely disrupt their lives and move to another part of the country to get another organ. It’s just not right. Aside from the fact there’s just not enough emphasis put on donor awareness.”
Keeping connected to Melrose
Donor awareness is one way Linehan’s friends back in Melrose are supporting the family. Those friends have formed a group called “Random Acts of Kindness for the Lovely Laura Linehan” and are running an organ donor awareness campaign, running up to National Organ Donor Awareness month in April.
“They really want to put Melrose on the map for donor awareness,” Linehan said.
The group is also asking people in Melrose to donate airline miles and whatever else they can to help the Linehan family. The airline miles in particular are helpful, as they allow Laura’s father, Jim, and sisters Cara and Drew to visit regularly.
“It’s really hard to accept the help, but we are so, so grateful,” Linehan said. “I have to tell you, between giving up my business and paying rent, signing a year’s lease, shipping my car down, hiring a moving company, the list goes on and on. We’re supporting two households.”
In addition, now that they are out-of-state, Laura’s supplemental health insurance no longer takes care of the co-pays for medication — she is currently taking 20 different medications — although the family’s BlueCross BlueShield insurance will still cover the transplant itself.
Of course, beyond the logistics of the situation, the heart of the situation is being separated from family and friends.
Linehan said she feels like “I’m in the witness protection program” and called Jacksonville “the land of the planned community,” filled with the same chains, retail stores and restaurants over and over.
“It’s amazing, I’ve been trying so hard to meet some neighbors and nobody talks to each other!” she said. “I think my only friend is Art the mailman, because I see him every day to go down and get my Random Act of Kindness.”
Linehan said she receives something almost every day from her friends back home.
One recent “Random Act of Kindness” sent by Linehan’s friends was bringing their Sunday coffee to Linehan. The women videotaped their Sunday coffee get-together and spoke to the camera as if it were Linehan in the room with them. The videotape arrived in Jacksonville shortly thereafter, along with pastries and other goodies enjoyed at the get together.
“Oh my gosh, I cried for two days. It was unbelievable,” Linehan said. “I always knew I had a lot of friends, but I never knew how much they loved us, how much they cared about us and what they would do to help us. The sense of community has been unbelievable.”