The process of waiting months or years for a matching organ can take an emotional, physical and financial toll on transplant patients, and their families.
Patients who are sick for years can grow weak and become unable to work. Families or spouses may have to act as both financial supporter and caretaker. And patients not lucky enough to live near a transplant hospital must bear the additional burden of regular travel and finding affordable hotel accommodations.
Which is why Penn’s new Clyde F. Barker Transplant House will be such a welcome relief for patients and their families.
Named for the physician who performed the first kidney transplant at the Hospital of the University of Pennsylvania in 1966, the Barker Transplant House will be a place where patients and families can stay during both transplant surgery and follow-up appointments. Modeled after the Ronald McDonald Houses, the Transplant House will offer comfortable accommodations at a nominal cost for transplant patients and their spouse or family.
The facility will be staffed around-the-clock and have furnished bedrooms, a family meeting room, dining area, communal kitchen, laundry room and computers with internet access. A 24-hour shuttle service will run from the House to HUP, and a telephone will connect directly between the transplant floor of the hospital and the family education center in the house.
But the most important feature, says Richard Leighton, a liver transplant recipient and chair of the Transplant House Committee, is the creation of a space where patients and families will be able to share their fears, expertise and advice with each other.
While the concept of a transplant house isn’t new, Penn’s will be the first of its kind for adults in Philadelphia.
“The biggest amenity of the house is the creation of a fellowship among other transplant people in other stages of the event,” he says. “When you’re told you need a transplant, the level of anxiety is very high because you have no idea what is about to happen to you. Your body is doing all sorts of crazy things. The hope is that [everyone will] talk to each other.”
When Leighton underwent his surgery in 2001, he says his wife was instructed in some of his care, but he worried that she was performing it incorrectly. In the Transplant House, families and caregivers will be able to swap stories and educate each other. “There will be people who have seen it and done it and gone through the same amount of anxiety,” says Leighton. “That education ... will be one of the biggest benefits.”
On a practical level, the facility, which will be located at 3940 Spruce St., will help alleviate some of the non-reimbursable costs of traveling to Philadelphia for procedures and follow-up appointments. While Penn’s transplant program mostly draws people from across the state, more than one-third of patients travel more than 50 miles for surgery, with some coming from as far as New England, the Carolinas and Ohio. Organ recipients must return to HUP for repeated follow-up care—sometimes as often as 50 times during the first two years after surgery.
The Penn Transplant Institute is the largest multi-organ facility of its kind in the region. Its surgeons perform more than 400 solid organ transplants per year.
Leighton hopes the house will be completed in the next two years. Penn’s Board of Women Visitors, the Philadelphia Antiques Show Committee and donations from throughout the transplant community are funding the $2 million project.
“For patients, it’s going to impact the quality of their experience,” says Leighton. “For the person who is not the patient, who is waiting to see how [surgery] comes out, this is going to be a big thing. They’ll be able to be with 10, 12 other people who are in the exact same situation. The comfort at that time of crisis is welcome.”
For more information, or to consider gift options including planned gifts, please contact Shawn P. Kleitz, Senior Major Gifts Officer at 215-898-0578 or firstname.lastname@example.org. Send donations to Penn Medicine Development and Alumni Relations, The Transplant House, 3535 Market Street - Suite 750, Philadelphia, PA 19104.
Originally published Jan. 8, 2009
Originally published on January 8, 2009