Feb 28, 2008
After beating cancer, Wilton woman learns she needs double lung transplant
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After winning a battle with cancer, Sue Ackerman of Indian Hill Road, and her family, thought they had put the worst behind them. Six weeks later, however, they learned the greatest challenge was yet to come.
The last eight years have been an unexpected journey for them, but with the support of the Wilton community and their faith in Christ, the Ackerman family said they have been able to cope with a relatively unknown disease that claims as many lives each year as breast cancer.
In 2002, Ms. Ackerman, 49, was diagnosed with pulmonary fibrosis — a disorder characterized by progressive scarring and deterioration of the lungs — two years after being diagnosed with Hodgkin’s lymphoma, a cancer diagnosis she successfully faced down.
Because this often fatal lung disease is incurable and there are no FDA-approved treatments for it, in order for Ms. Ackerman to beat pulmonary fibrosis, she’ll need to undergo a double lung transplant.
After dealing with her Hodgkin’s, Ms. Ackerman hoped she would receive a clean bill of health but instead was informed she had pulmonary fibrosis.
“I cried and I was shocked, I was blind-sided, I was absolutely stunned by that news,” Ms. Ackerman said.
Six years after being diagnosed, Ms. Ackerman has lost more than 70% of her lung function. She said the disease’s acceleration varies on a case-by-case basis, and for her, “it’s a very slow process.”
But despite the shock of her diagnosis, Ms. Ackerman was more surprised when she looked into the disease and found out just how little information was available and how little research had been done.
“What’s shocking is this has no treatment, no research and, what’s even more shocking, no funding to find a cure,” she said. “It’s too late for me, but hopefully in the years ahead” more research will be done to find potential cures for this disease, she said.
“We sought alternative medicine, and we discovered that there was nothing out there,” Ms. Ackerman said.
Over the past five years, the prevalence of pulmonary fibrosis has risen 150%, leading some researchers to speculate the disease could increasingly affect baby boomers, she said.
“The potential for this to grow is enormous,” Ms. Ackerman said.
The Ackermans said lung transplantation is the “youngest and riskiest of transplants, most vulnerable to the outside environment.” The “potential for complications is great, short- and long-term.” Ms. Ackerman’s Hodgkin’s could come out of remission, her kidneys could go into failure, her body could reject the lungs, or she could develop other cancers, they said.
Because there is no way to know when a set of lungs from an organ donor will become available, Ms. Ackerman must stay within two hours of New York-Presbyterian/Columbia Medical Center, which has the No. 1 survival rate for lung transplants in the country, she said. The hospital has a “several-thousand-mile radius” for finding donor lungs.
“Lungs don’t last very long,” she said. “You’ve only got a six-hour window in which to work.”
Still, the hospital’s four-year survival rate for transplants is 72%, she said.
In 2007, the procedure for determining a waiting list for lung transplants was changed so that patients were given priority based on need, rather than how long they have been on the list.
“They want you to survive, they want to give you the best match possible,” Ms. Ackerman said, adding she was approved for a potential transplant on New Year’s Eve and that those on the waiting list are only added to it if chances of successful transplants are high.
In January, the Ackermans got a phone call for a potential match of lungs and went to the hospital.
“The lungs were too small for me,” Ms. Ackerman said. “It’s not unusual to be called two or three times” before finding compatible lungs.
Ms. Ackerman said the hospital estimated it would take between three and six months to find a match.
While she waits, Ms. Ackerman takes anti-inflammatory drugs and supplemental oxygen and engages in breathing exercises to help maintain her quality of life.
Ms. Ackerman said that when her lung functioning had dropped to 50%, she didn’t even notice a difference, but since then, the decrease in capacity has impacted her more and more. She said a person with healthy lungs uses 5% of his or her body’s energy to breathe, while she’s using 30% of her body’s energy now, causing her to lose a lot of weight.
Although she’d used supplemental oxygen since the end of 2005 to help her around the house, Ms. Ackerman was hospitalized over the holidays with collapsed lungs and now uses an oxygen tank all the time, whether at home or not.
“Now for the first time, I’m using oxygen just to move around,” Ms. Ackerman said.
History
After she endured six months of chemotherapy in England, where she was living at the time, Ms. Ackerman’s Hodgkin’s returned just six weeks later. In January 2001, in order to beat the “aggressive” form of cancer, Ms. Ackerman returned to New York, where she received a stem cell bone marrow transplant and underwent radiation. Ms. Ackerman had beaten the Hodgkin’s, but was diagnosed with something she’d never heard of.
“The chance of getting pulmonary fibrosis from radiation is 2%,” Ms. Ackerman said, adding when presented with those odds, there was no doubt in her mind to undergo radiation in order to beat the Hodgkin’s. “The radiation caused something to go wrong in my lungs; the healing mechanism was affected and thickening of the air sacs occurred.”
Though the cause of Ms. Ackerman’s pulmonary fibrosis is known, the cause for most afflicted with the disease is unknown, and two-thirds of those diagnosed with unknown causes die within five years, she said.
After staying with his wife for two weeks following her stem cell transplant, Russ Ackerman returned to England to learn his company, Bertelsmann, had to shut down its e-commerce division, where he was head of global marketing. Out of a job at the time, Mr. Ackerman decided to move his family to Wilton in 2001, a few months before the September 11 attacks, where the family has remained.
“I feel optimistic, hopeful,” Mr. Ackerman said about his wife’s needed transplant. “We’re also kind of resigned — it’s not like we have a lot of options. It’s sad when you’re in a situation with so little options.”
Community
Despite her affliction, Ms. Ackerman remains optimistic and upbeat.
“People are always surprised when they see her,” Mr. Ackerman said of his wife’s attitude toward her situation. “You just try to forge through.”
The Ackermans have found peace in the support of Hope Church and the Wilton community, even though they moved here in 2001 on a sort of whim.
“We kind of just plopped here,” Mr. Ackerman said, adding a friend told him Wilton was a great place. “I always think of it as The Wizard of Oz, spinning in the house and we just landed here. But it’s a great place to land.”
Ms. Ackerman operated Wiltonia Home Collection — which sold upscale home accessories at the Country Gallery antiques store in Wilton Center — from October 2004 to the summer of 2006.
“Then I just had to stop because it was just physically too demanding,” she said.
From the police to the schools to the residents of Wilton, the Ackerman family has benefited tremendously from the support of their community, she said.
“For example, we had a friend purchase gifts for us” during the holidays, Ms. Ackerman said. “They even wrapped the presents, too.”
People come by asking if they need anything at the grocery store, the hardware store, the mall, saying that they are going themselves anyway, Mr. Ackerman said.
The Ackermans have two children, Adriana, 12, a seventh grader at Middlebrook, and Alexander, 10, a fifth grader at Cider Mill.
“The schools have been way supportive of both of my kids; the teachers have been very supportive also,” Ms. Ackerman said.
“We have a whole contingency plan for when we get the call to drive to Manhattan for the transplant,” Mr. Ackerman said. “We literally can hand our kids over to friends who can take care of them for the next week until our family gets down,” Mr. Ackerman said, adding they have “drivers and backup drivers for every scenario.”
Adriana and Alexander have also been very helpful and supportive, Mr. Ackerman said.
“Both of our kids are incredible; they’ve helped me around the house,” he said. “They’re empathetic and caring, and have become very good at vacuuming.”
Ms. Ackerman said her belief in Jesus Christ has helped her tremendously to cope with her diagnosis.
“Ultimately, it is not in my hands,” Ms. Ackerman said of her situation. “I truly believe He will give you the strength and faith to deal with anything.”
“My faith in Christ has seen me through all these various issues — I have a sense of peace and confidence and strength,” she said.
“It’s the big unknown,” Mr. Ackerman said. “Because it is so unknown, I think it is critical for me to rely on my faith to see me through whatever is up ahead.”
The Ackermans said the congregation at Hope Church has been very kind to them, keeping them in their prayers and “consistently delivering meals” to their house.
Mr. Ackerman said the Wilton Police Department has also agreed to do what they can to help the family out.
“Wilton’s a very affluent community, but we’ve got really generous, big-hearted people,” he said. “It’s just amazing what a blessing it was to move here. It was meant to be.”
Awareness
The Ackermans hope their situation will play a small part in spreading awareness about the disease.
Ms. Ackerman said pulmonary fibrosis claims as many lives as breast cancer each year, yet receives considerably less funding.
“The difference between them and us is they were out advertising 20 years ago,” she said of those raising awareness for breast cancer.
In July, Congress unanimously passed a resolution recognizing the need for more research into the causes and possible treatments and cures of pulmonary fibrosis, an act it is hoped will trigger substantially more funding for the disease, she said.
“Hopefully, people in the future will have more options,” Ms. Ackerman said. “It looks like within five years there will possibly be other options.”
Information, research donations: coalitionforpf.org.
© Copyright 2008 by Hersam Acorn Newspapers
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