Lung Transplant Costly
By Rich McManus
On the Front Page...
The disease, manageable up to now with enzyme pills that aid in digestion, daily respiratory therapy that shakes loose the congestion in his lungs, and antibiotics to control lung infections, has worsened dramatically in recent months. Last spring, his lung function tested so poorly that he became a candidate for a double-lung transplant at the University of Pennsylvania hospital; he is now also a candidate at the University of Maryland medical center in Baltimore. His wife, Joanne, an immunologist in NICHD's Cell Biology and Metabolism Branch, carries a beeper on her hip; they could get the call at any moment, although the typical waiting period is about a year.
Though they enjoy good medical insurance coverage, the Lancasters anticipate a gap of about $25,000 that they will need to cover cost of relocation (the postoperative therapy at Penn would last a minimum of 3 months), lost wages, rent on their apartment in Silver Spring, and drug costs not covered by insurance. To cover these expenses, they have launched a panorama of fundraising activities among friends, family, church congregation and, now, NIH'ers. On Saturday, Oct. 25 in Masur Auditorium, Bldg. 10, R&W has helped arrange a gala fundraiser that will feature Irish dancing and music, national Scottish fiddling champion Elke Baker (whose dad is an NIH'er), and a series of performers who will recreate, Joanne hopes, some of the excitement of the Riverdance phenomenon sweeping the nation. Herself an Irish stepdancer, despite her origins in Glasgow, Scotland, Joanne will perform too, literally dancing for her husband's life. "We're hopin' to pack the house," she declares in a Scots burr.
Though slight, with a dancer's build, she seems as steely as any dockside Glaswegian. She met Henry at Washington University in St. Louis when the security guard at her dormitory introduced them; Henry was in dental school and she was doing research for a year in the lab of, ironically, a transplant surgeon; the following year she entered the immunology Ph.D. program at Washington U. Since then, life has been anything but secure, given Henry's decline.
He was diagnosed at age 7 with CF. "Back then, they didn't know much about the disease and weren't very good at diagnosing it," he recalls. "I had lots of pulmonary infections as a kid. I seemed to always have colds and pneumonias, but didn't know why. I was also malnourished because I wasn't digesting my food. I had a lot of intestinal pain, and I got really thin. I missed a lot of school when I was growing up because I was home with colds, flu, and what they thought was bronchitis."
Lancaster says he "could never do much in the way of sports. I didn't have the breathing capacity to do a whole lot of activities. But it didn't get really bad until about 10 years ago," when a series of chronic respiratory infections landed him in the hospital for the first time. Physicians then detected that his lung function had decreased. In the intervening years, despite the rigors of thrice-weekly volleyball games, completing a biology major at the University of Illinois and earning a D.M.D. at Washington University, Lancaster was hospitalized more frequently, sometimes for 2-3 weeks at a time. At NIH since the summer of 1995, he is now a Clinical Center patient of Dr. Milica Chernick. No sooner did he emerge in early September from a 3-week inpatient course of antibiotics and respiratory therapy at the CC than he went back to seeing patients of his own in the dental clinic. Ironically, his bench research is in gene transfer, "although not in CF genes, but in salivary gland genes."
Lancaster was 8 when he decided to become a dentist. "My friends all made fun of me when I was a kid, comparing me to the elf who wanted to be a dentist in the Rudolph the Red-Nosed Reindeer TV show," he remembers. "I think the fact that my mom was a nurse had a lot to do with my decision. I just really liked the health field. And I was always really good with my hands. I like artwork, and have always been able to draw."
His mother dissuaded him from pursuing an M.D. because of the long hours typically logged by physicians. "She kind of steered me toward dentistry."
No allowances due to CF were made for Lancaster during his medical training, though his educators were very supportive of his health requirements, he says, adding, "my coworkers at NIH have been very helpful and supportive with respect to my illness, and occasional missed work." The only exemption he receives at NIH is from treating patients with multi-drug resistant tuberculosis, because they are infectious and he could acquire the untreatable illness. Also, the mask he would be required to wear while treating such a patient is too thick to allow him to breathe.
Lancaster became an NIH patient only after looking for a CF clinic once he arrived 2 years ago. "I called around for a CF center when I got here, and someone recommended calling Dr. Chernick for her advice. She said, 'Why not become one of our patients?' It has worked out very well."
Lancaster says -- almost true to some abstract Peorian ideal -- that CF never deterred him from his ambitions. "There was a school nurse in high school who told me I shouldn't try dental school," he remembers. "She was the only person who said don't do it. Cystic fibrosis did make things a little more difficult for me, but I never felt I wouldn't be able to [become a dentist at an academic medical center]. Until recently.
"In the past year, my health has gotten gradually worse to the point that I'm now on the lung transplant list," he said.
"He went downhill very quickly," nods Joanne.
"Now, I'm not sure I'm going to be able to work like I used to," Henry says.
Notes Joanne, "We brought home oxygen this time [following his most recent hospitalization] -- we never did that before. He just never came back to the level we hoped he would."
During a critical test of lung function at Penn last March, he underwent a measurement called FEV1 -- forced expiratory volume in 1 second -- a major gauge of CF's ravages. Anything below 30 percent of normal qualifies you for a lung transplant. Lancaster blew a 19.
"It was up in the thirties and forties when we met 8 years ago," recalls Joanne. "It's been below 30 for several years, but we never considered a transplant back then. We went through denial," she declares ruefully. "We did not want to go through major surgery, and problems with rejection and drug therapy. We really didn't want to have it unless it was the last option. But then we realized that it can completely change your quality of life, to the point where you have normal lungs. Henry will be able to lead a regular lifestyle."
Explains Henry, "My biggest reason for not doing it earlier is that transplant was considered a last-ditch effort. I could just forget being able to work, and I'd be tied to the hospital for the rest of my life. But they've gotten so much better at it [recently] that you can count on a much better life [after transplantation] than you have now."
There is no danger of CF recurring in the new lungs; the big worry is rejection. If he gets a transplant, Henry will remain on medication for the rest of his life to prevent this outcome.
Donor organs come chiefly from people who die from head trauma, gunshots and suicide, he explained. Victims of car accidents typically sustain too much damage to internal organs to contribute viable lungs. Lungs must be transplanted soon after the donor's death; matches are made strictly on the basis of body size and blood type -- there is no time for tissue-typing. "You just hope it's a good match," he said.
The Lancasters were advised to mount their own fundraising campaign at the suggestion of social work staff at Penn, whose long experience taught them that insurance is never enough in transplant situations. Social workers put them in touch with the National Transplant Assistance Fund, a nonprofit agency that serves as trustee for funds raised, to assure they are used solely for expenses directly related to the transplant. Lancaster's fund is dubbed "The Silver Spring Lung Transplant Fund."
As inventive at raising money as they are at their research careers, the Lancasters have cast a broad net: last June, Joanne drafted a heartfelt letter outlining her husband's plight and circulated it to everyone they knew from family, neighborhoods, schools, and workplaces. Their church, First Baptist Church of Rockville, subsequently established a fund for Henry and the youth of the church have held car washes to raise money. Henry's uncle in Baltimore has hosted poolside barbecues, raffles and golf outings to raise funds; a friend in St. Louis who runs marathons on behalf of charities has taken on Henry's case for a race next month. In December, Henry's sister will host a fundraising dinner. Thus far, the fund stands at about $8,000, said Joanne.
She is particularly excited about the Masur event on Oct. 25 (further details of which will appear in upcoming editions of the NIH Record). "I thought with the whole Riverdance thing being very popular, people would come see an Irish dancing program," she said. Since she dances at many festivals, including ones at Glen Echo Park and the Maryland Renaissance Festival, she has many contacts in that world. "We'll have Tir Na nOg (Gaelic for Land of the Forever Young), a group from Baltimore that offers a theatrical presentation. It's about a 45-minute act and features incredible dancing, including step, set and ceili." Her dance instructor, Sean Culkin, will present performances by his young students and his adult dancers. Vendors contributing goods include Fresh Fields, Bruegger's Bagels, and Sutton Place Gourmet. Raffle tickets will be sold for such treats as football games, airline flights and dinner at La Madeleine. A variety of homebaked goods and apple cider will be available at intermission. "R&W, also, has been really helping out with sodas and ticket sales," she added. Tickets will be $10 and their availability will be announced soon.
Already, the Lancasters are imagining LAT -- life after transplant. "I hope to run, bike and jog -- all the things I used to enjoy, or have never been able to do before," says Henry. "Just being able to climb stairs easily will be great."
Sighs Joanne, "I want to go to Hawaii and just sit on the beach."
"I'll surf," answers Henry.
An ocean of goodwill at NIH on Oct. 25 will do much to make these dreams a reality. Stay tuned for more details.
Calm Amid the Storm
Though he was reared from age 5 in Peoria, Ill., Henry Lancaster was born in Fayetteville, N.C., where his dad was stationed at Ft. Bragg. He retains much of the soldier's stoicism regarding his battle against cystic fibrosis. Not a trace of complaint or self-pity characterizes him. Indeed, he looks like he just stepped off a university quadrangle in his jeans, golf shirt and sneakers. Far from an embittered battler, he looks like a companionable fraternity brother.
His daily regimen to cope with CF, however, is anything but a fairway stroll. He must take antibiotics to prevent lung infections, usually in pill form but, when he is hospitalized, by intravenous drip. He takes enzyme pills before each meal to help digest food. "I have to eat lots of high-calorie foods to compensate for what I'm losing [due to CF]," he said. "But the pills basically take care of the digestive problem." His wife, Joanne, notes that he has gained 30 pounds since joining an NIH protocol 2 years ago. "He used to be thin as a rail," she observes. The NIH study includes higher-potency enzymes than he had formerly taken.
An area of therapeutic improvement is in what he calls "postural drainage." CF patients undergo respiratory therapy regularly to pat loose the thick secretions that accumulate in the lungs. Three times a day, for an hour at a time, Henry dons a TheraVest, which he describes as "basically a life jacket hooked to an air compressor." Substituting for the manipulations of a respiratory therapist, the jacket "just shakes you, taking the place of hands-on therapy. It helps me cough up obstructions. I also have to breathe nebulized bronchodilator medication while I'm in the vest."
All of this seems unremarkable to Henry. Such implacability certainly plays in Bethesda, if not in Peoria.
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