FREDERICKSBURG, Va. — Abbe Buck Hann is overjoyed that the spending plan recently approved by Congress includes benefits for people who suffer, as she does, from a little-known condition affecting lymph nodes.
The jubilation is a stark contrast to the despair the Stafford County woman felt in the past, when she went to the doctor’s office and discovered she weighed more than 400 pounds.
“I started crying on the nurse’s shoulder. What have I done?” she asked, sobbing because she was eating so little at that point, she couldn’t understand the increase. “I started blowing up like the Pillsbury Doughboy. ...My hands started getting bigger, my feet started getting bigger. Everything started getting larger.”
Hann, 66, eventually learned she has lymphedema, swelling that comes from a buildup of lymph fluid in the body.
The lymph nodes “act like a drain in your sink” and when they get clogged, the liquid accumulates, according to the Centers for Disease Control and Prevention’s website.
Sometimes, the condition is caused by certain surgeries, such as a mastectomy that affects the lymph nodes. Or, it can come on as a result of certain medical conditions or for reasons that are unknown, according to the Cleveland Clinic.
With the ailment, people like Hann, a former contract writer and self-employed businesswoman who still sings and does “a weird vaudeville act” at Fredericksburg breweries, will blow up, as she described it, without proper treatment.
That includes initially wrapping the area affected—usually one or both of the arms or legs—in gauze and being hooked to pumps that drain off the excess fluid. Hann had that done twice a week for four months back in 2018 when a doctor finally diagnosed her problem.
Since then, she’s lost more than 110 pounds and has relied on compression stockings, similar to what diabetics wear, to keep the blood circulating and the excess fluid from building up.
The garments are tight-fitting, custom made for her and cost about $650 a pair. They’re worn daily for 12 to 14 hours and lose their elasticity after about six months.
The cost is not covered by Medicare and that’s why Hann and others have lobbied Congress for 12 years to pass the Lymphedema Treatment Act. The Senate approved the act as part of the $1.7 trillion Consolidated Appropriations Act of 2023.
The act expands Medicare coverage for the type of pressure garments needed to help an estimated 3 million to 5 million lymphedema patients maintain their health, “avoiding needless suffering,” said Cindy Cronick, who leads the Virginia team that’s lobbied for passage. That includes Hann, who’s regularly been in touch with her representatives.
“It’s because of advocates like Abbe, who were willing to speak up about lymphedema and the need for Medicare coverage … that we were successful,” Cronick said. “I’m very grateful to Abbe for the great work she has done on behalf of so many lymphedema patients.”
Heather Ferguson, executive director of the advocacy group, said “some people are easily discouraged, but not Abbe.”
“I hope that Abbe’s can-do attitude, even in the face of adversity, is an inspiration to others reading her story,” Ferguson wrote in an email.
Health setbacks
Hann certainly has faced her share of setbacks.
She was 14 when she was diagnosed with scoliosis, a curvature of the spine, but she didn’t learn of her condition until decades later. Her parents were divorced and she said neither described it as a cause for concern.
After she gave birth to her son in 1989, she had so many problems with her back, she was put in traction for nine months in a New Jersey hospital. One relative took care of her baby and another, almost as an afterthought, later mentioned the scoliosis diagnosis.
Hann recovered, ran her own company as a contract writer and business developer and was living in Gainesville, in a three-story townhouse with her husband, Skitch. She’d worn a brace for a while, did stretches and pilates, saw a chiropractor and walked regularly — and very fast, she said.
For much of her adult life, Hann has been 5-foot 5-inches tall and between 200 and 250 pounds.
“I was a big girl, but I wasn’t this large,” she said.
By 2010, the scoliosis caught up with her again. Several times, she almost lost her footing, or her legs buckled under her and she fell. Once, while driving from Maryland to Northern Virginia, her legs suddenly felt like they were on fire with pains shooting from the knees down.
She thought it was the old back pain or problems with her sciatic nerve. A test showed her spine was shaped like an S-curve and that she needed surgery.
What she hoped would be the answer to her problems may have caused an even bigger one.
‘Shamed’ patients
Hann eventually had two surgeries to correct the scoliosis and she said both were botched. She ended up with several rods, a dozen screws and two separate cases of MRSA, a difficult-to-treat staph infection that often spreads in hospitals and health-care facilities.
Her weight started to go up after the first surgery, but she said the pounds really piled on after the second procedure, and MRSA infection, in 2014. The surgeries were done in two separate hospitals.
In the meantime, she went from walking fast to needing a cane, then a walker, then a wheelchair. When she asked one doctor to look at the pain she felt in her knees, he told her: “I can’t look at anything, you’re just too fat.”
Dr. Jennifer Kirby, a specialist in endocrinology, diabetes and metabolism management with UVA Health in Charlottesville, said those responses are typical. Obesity and lymphedema often go together, she said, but many medical providers don’t know about lymphedema or recognize it as a separate condition.
“Patients are often shamed and told to lose weight,” Kirby said. “Unfortunately, lymphedema does not respond to weight loss measures.”
Kirby happened to see Hann in a hospital hallway and took her aside to talk with her. Hann discovered that water is worse than fat and came to think of the excess fluid in terms of water jugs.
“Consider having 20 of those 5-pound jugs of Deer Park inside your body and you’re dragging them around because your lymph nodes are gone,” Hann said. “They don’t work anymore, they don’t flush the toxins from your body.”
Kirby reassured Hann that what was happening wasn’t her fault, that she needed treatment—wrapping the area, pumping off the fluid, then daily use of compression garments.
Hann would like to get down to about 250 pounds, and she and Kirby are discussing various options.
‘My life back’
Hann still uses a walker as she jokes that she’s got a couple screws loose—in her spine—and probably will need more back surgery to correct the problem. Even so, she’s grateful for the improvements she’s made.
“I feel a lot better because I feel like I’m getting my life back,” she said.
After relying on a paid caregiver or her husband to take off work and get her to treatments, she was able to drive herself to Charlottesville for a checkup with Kirby.
The doctor was amazed that Hann was able to put her walker in the back of the car and get there without assistance.
“I told her I actually could drive a car,” Hann recalled. “I just couldn’t do cartwheels in the hall.”
Maybe next year.
