Home Away From Home
Accommodations help transplant patients in time of need
June 29, 2012 | Nancy Humphrey
A few personal touches – a “Good Luck” balloon tied to a chair and Easter cards on the mantle – make Debbie and Danny Nally’s temporary housing at the Villages at Vanderbilt feel a little more like “home.”
The Nallys, who are from Bardstown, Ky., are staying in a well-appointed apartment across 21st Avenue from The Vanderbilt Clinic while Debbie undergoes a stem cell transplant for lymphoma at Vanderbilt-Ingram Cancer Center.
Debbie was diagnosed with diffuse large B-cell non-Hodgkin lymphoma five years ago. When she relapsed in September 2011, her physicians in Kentucky told her they were sending her to Vanderbilt for an autologous stem cell transplant.
Patients undergoing stem cell transplant – either autologous or allogeneic – are required to come to the clinic daily after their transplant. For patients from outside the Nashville area, the prospect of having to spend weeks away from home can add to an already anxious situation.
But Vanderbilt-Ingram assists patients in this situation by coordinating subsidized local housing. For its adult blood and marrow transplant patients and caregivers, Vanderbilt-Ingram offers 15 furnished one-bedroom apartments in two locations near Vanderbilt and four hotel rooms at Extended Stay America Hotel on West End Avenue near campus.
The apartments and hotel rooms are stocked with all the comforts of home – a fully stocked kitchen, linens, a flat screen TV, cable and Wi-Fi. All the patients need to provide are their own toiletries and food.
This service has certainly relieved much stress for patients like Debbie Nally.
“It’s so convenient and so comfortable here,” she said. “Having this home away from home made the process so much easier – not having to worry about traffic, parking. We could just walk across the street to the clinic every day.”
As Debbie’s caregiver, Danny Nally notes that the convenient housing is allowing his wife to focus on recovery.
“Her job is to take care of herself,” he said. “I have three jobs – the three C’s: cooking, cleaning and chauffeuring.”
For many blood cancer patients being treated at Vanderbilt-Ingram’s Blood and Marrow Transplant Program, facing cancer can momentarily take a backseat to logistical worries when they dive into the fine print about treatment.
Leukemia, lymphoma and myeloma patients receiving allogeneic stem cell transplants at Vanderbilt must sign a contract to live no more than 30 minutes away from Vanderbilt and its expert care for at least 100 days, sometimes as many as 120. Patients receiving their own stem cells (autologous), harvested prior to cancer treatment, usually stay about 30-40 days.
Patients are seen frequently in the outpatient clinic in the first couple of weeks after a transplant. Their medications must be monitored closely; they could require blood products during this time; and they might suddenly develop potentially life-threatening complications.
“It’s a critical time,” said Myrlena Lee, assistant administrator in the Cancer Patient Care Center-Hematology/Stem Cell Transplant. “Their immune systems are not functioning. Patients must be closely monitored. With any sign of infection, if the health care team isn’t right on that, it can be deadly.
“Community hospitals don’t have the resources, blood products, and physicians who have experience dealing with these patients, and complications, like graft-versus-host disease (rejection), which can crop up suddenly,” she said.
But having to relocate to Nashville can cause a great deal of stress for transplant patients who come from all over Tennessee, and as far away as Alabama, Mississippi, Kentucky and Indiana. They must pick up and leave the comfort of home, often leaving behind children and jobs.
For many patients, it’s not only inconvenient, but costly. If insurance won’t pay lodging, many patients aren’t sure how they can afford to stay in Nashville for up to four months. That’s where the Cancer Center’s housing program for stem cell transplant patients can be life-saving in another way.
Linda Hudson, LCSW, and Kelly Owens, LCSW, social workers with the Blood and Marrow Transplant Program, help coordinate lodging for transplant patients and their caregivers.
In 2011, there were 214 adult stem cell transplants at Vanderbilt University Medical Center.
“There’s a revolving door for the apartments,” said Hudson. “The apartments are always full with a waiting list.”
Without insurance coverage or help from Vanderbilt, the average donor transplant patient would pay about $10,000 out of pocket for lodging alone, Owens said. Many insurance companies will allocate $10,000 or 150 days for meals and lodging. Contributors like Team Chad, a group that serves individuals affected by leukemia, help to support expenses associated with this lodging.
“We spend a lot of time evaluating each patient’s situation, and it takes a lot of coordination and a lot of behind-the-scenes work,” Hudson said.
A shuttle service is also offered Monday-Friday at two of the locations for those who need transportation.
“Sometimes we’ll have a patient with AML (acute myeloid leukemia), with the mortality as high as it is, who comes here from five or six hours away,” said Owens. “They’ve never been to a big town. They’re afraid to drive. You would think their first concern would be, ‘I have to get through this transplant and live,’ but oftentimes they ask ‘how am I going to drive in Nashville?”
In addition to assisting patients with housing, Hudson and Owens also coordinate a weekly caregivers support group, host a bimonthly caregivers’ class, and both assist with securing resources, reading materials, and connecting patients to organizations and groups for additional assistance.
For patients like Theresa Gannon, the support is critical to their healing process.
Gannon also needed housing while being treated for myelodysplastic syndrome (often called “pre-leukemia”) at Vanderbilt-Ingram.
Gannon, who lives more than 100 miles from Nashville in Crossville, Tenn., had an allogeneic (donor) stem cell transplant in October 2011, and with setbacks during her recovery, she and her husband had to stay in the apartment until mid-March.
“I don’t know what we would have done without a place to stay,” said Gannon.
“There’s so much paperwork and sickness. There’s no time to think about where you’re going to stay, too. We didn’t have to worry about cleaning, about anything,” she said.
“It’s one less worry and we really appreciated it.”
Photos by John Russell
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