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Gift of Life Transplant House: A TLC community For 18 years, Gift of Life Transplant House has care woven by the community of guests, staff been home away from home for patients and and volunteers. their families waiting for, and recovering from “Our guests have so many difficult transplant surgery, as well as those returning challenges,” says Sr. Margeen Hoffmann, for checkups or treatment. The house is Executive Director of Gift of Life Transplant beautiful — a restored Georgian Colonial brick House. “We ease their journey by providing an home with a modern addition — but its true affordable, homelike environment that fosters beauty lies in the rich web of tender, loving mutual support, fellowship and hope.”

Mother and son: caregiver and heart recipient There is sound reason for the Gift of Life policy that a high school woodworking instructor whose optimism requires a companion to stay with each patient. Besides and sense of humor no doubt helped in his recovery. helping with physical needs, Sr. Margeen knows that the support companion is often the companion’s close in greater need of emotional care than the patient. On the inside... relationship with the “For the first few transplant recipient becomes critical days, the the center of the TLC web. patient is often “Gift of Life Bob Christianson, age 53, and unconscious Transplant his mother, Clara — and they House” Christianson, age 84, were need lots of – pg. 2 Gift of Life guests for sleep after two months last discharge “Annual summer from following Bob’s hospital,” Transplant Picnic heart explains Sr. Recap” transplant. Margeen. – pgs. 3 & 4 “Mom never Continued bargained for on page 2. “Transplant raising me Center Nurse twice,” quips Receives Bob, Transplant from Co-worker” – pg. 5 Bob and Clara Christianson spent two months at the Gift of Life Transplant House following Bob’s heart transplant in 2002 Mother and son: caregiver and heart recipient – Continued from page 1.

“That leaves the we had been holed up in some hotel caregiver to face the challenges room,” she says. “I like my peace alone for much of the time.” and quiet, but it makes you feel Clara agrees. better to get out and talk to other “I never could have done it if people.”

A rich web of support There are 48 guest bedrooms at Gift lifelong friendships are made. very special. They generate the of Life. That means there are about Sr. Margeen, a social worker by goodness that makes our house feel 100 people going through the profession, understands that to like a home. Lots of people do little transplant journey together. As they support the house’s mission, she things that count — like baking share their concerns in one of the needs to maintain an exceptional goodies, sewing homemade quilts, many cozy nooks scattered staff of employees and volunteers. installing a fan or offering rides to throughout the house and garden, “I look for generous, guests.” enjoy a game of billiards, prepare a compassionate people who have “There’s often a birthday party meal, or participate in one of the had a life experience that has left or a spontaneous celebration,” says many other communal activities them with a special ability to be Bob. “We had fun. Someone even offered, their web of support grows sensitive to the needs of our brought in an angel food cake and and strengthens. In many cases, guests,” she explains. “Our staff is other goodies for Angel Day.”

All the have access to fully equipped kitchens, coin- Transplant Center Newsletter touches operated washers and dryers, several dining Mark Stegall, M.D. of home Medical Consultant areas, reading and Jennifer Goodman For a fraction of hotel reflection rooms, and Communications Consultant costs, guests get a room television, playroom, Yvonne Hubmayr Freelance Writer with a private bath, exercise and recreation telephone and Internet areas. A shuttle service Monica Young Graphic Designer access, linens and space in takes them to Mayo Clinic, Editorial Board: a pantry, fridge and the hospitals, grocery and Charise Bauer, Ellen Case, Joan Meyer, freezer. In addition, they department stores. Jayne Oles, Kathy Schwab, Sandy Schwantz, Michelle Skaar

Mayo Clinic has offered transplantation as a treatment option for adult and pediatric patients since 1963. Mayo organ transplant programs have earned worldwide A healthful environment recognition for their expertise and success. In 1998 the separate organ and tissue transplant Gift of Life is licensed by the State patients, housekeeping staff use efforts united under the umbrella of the Mayo Transplant Center. This cooperation of Minnesota and Olmsted County commercial equipment and enhances the ability of Mayo physicians and Public Health Department. To ensure products. Guests are not permitted scientists to share expertise and resources, meticulous cleanliness and a to smoke or use alcohol or other offer comprehensive integrated transplant services, and to conduct innovative research healthy environment for recreational drugs. in transplantation. immune-suppressed transplant

Page 2 All are “Illness does not discriminate and provide.” emotional need is much greater than Financial support also comes Welcome... financial need,” says Sr. Margeen. from grants, memorials, and “Many of our past guests who could fundraisers, such as an annual golf Gift of Life is open to everyone afford to pay more make generous tournament and silent auction, and regardless of financial donations out of goodness and the sale of note cards, logo- condition, race, or nationality. gratitude for the service that we embroidered clothing, and cookbooks.

Taking the final step to recovery

Clara is now back in her own home Bob is back in his home, too, and and, though she enjoys her own looking forward to teaching again. bed, she misses the Gift of Life For a brief moment, he gets community. “The house is uncharacteristically serious to “The house is all about hope,” acknowledge the depth of his says Clara. “It’s just not possible for all about hope,” gratitude. people going through the transplant “I’ve died once — almost process to be in a better place — says Clara. twice,” he says. “The Gift of Life you won’t find another group like it.” means what it says.”

Enjoy 15th Annual Transplant Picnic

250 A popular pilgrimage pancreas transplant recipients joined The idea of having an annual picnic in the festivities. Lively conversation and laughter developed from an exuberant group punctuated the festive atmosphere at of liver transplant recipients and They came from near and far Essex Park in Rochester last July their families and friends, back in Many people traveled great when more than 250 people 1987. In conjunction with the annual distances to attend the picnic. Sara gathered to savor the success of golf tournament, more and more Penaloza de Jesus, a liver recipient transplantation. It was perfect picnic transplant recipients made an from June 2000, came from Mexico weather; sunny skies and not too annual pilgrimage to Rochester to City. There were 42 liver recipients hot. There was a delicious lunch, fun support the Gift of Life Transplant from 10 states, 26 kidney and games for the kids, Jason the Juggler House, and meet up with old friends pancreas recipients from four states, for entertainment — and lots of at the picnic. By the 1990s, word had 10 heart and lung recipients from support for the transplant spread throughout the transplant three states, and 10 blood and community. community and heart and lung, marrow transplant patients from blood and marrow, and kidney and three states. And several living

Continued on page 4

Page 3 Enjoy 15th Annual Transplant Picnic 250 – Continued from page 3. kidney and liver donors were also present with their recipients. Attendees heard an invocation by Syl Hengsteg and then enjoyed a delicious lunch. Afterwards Chris Arnold, who had a liver transplant in November 2000, shared his personal experience of receiving the gift of life. Drs. Charles Rosen, M.D. and Mark Litzow, M.D. provided an update on the Transplant Center, and the blood and marrow transplantation (BMT) and liver transplant programs. They discussed new Transplant Center initiatives such as the increasing success of BMT, laparoscopic donor nephrectomy, kidney transplantation for Chris Arnold and his wife attended the transplant picnic. Arnold, who sensitized patients, upcoming islet had a liver transplant in November 2000, shared his personal transplant cell transplantation, and living experiences with other attendees. donor liver transplantation. Deserving Mark Your thanks... calendar

The Transplant Center Coordinating Committee: The annual “Celebration of Bev Taylor (social work) Deb Dicke-Henslin (kidney/pancreas) Life Picnic” Kay Kosberg (kidney/pancreas) will be held on Kristin Eggebraaten (liver) July 12, 2003 Lenora Smith (Charlton Transplant Clinic) at Essex Park. Jan Larson (Gift of Life Transplant House) Terece Abad (Gift of Life Transplant House) For more information, including times and directions, please contact your This committee has worked hard to make the picnic a success. nurse coordinator. They received valuable support from the Gift of Life Transplant House Board, staff, and volunteers.

Page 4 Transplant Center Nurse Receives Transplant From Co-worker

from a nurse who donated a worker. kidney,” Boots said. “I’d donate “It just seems like such a big another one if I had three. It seems sacrifice for a friend to make,” like a no-brainer to me.“ Lee said. Boots responds, “I have two The first two kidney transplants kidneys, I can live with one, why It was not Lee’s first kidney wouldn’t I help?” transplant. At the age of 15, she Boots’ parents were concerned developed an illness that caused a about her decision, knowing that Michele Lee (left) received a rare disease in her kidneys. Her there were risks. But when they kidney transplant in September mother donated the kidney for her saw how much better Lee looked 2001, when fellow transplant first transplant, but it failed after immediately after surgery, they nurse Jane Boots (right) donated a developing a clot the first day after understood their daughter’s kidney to her friend. Mikel surgery. That necessitated a second generosity. Prieto, M.D., (center) was a transplant, this time from a member of the transplant team cadaver. Advice for others that performed the transplant. For ten years, the cadaver Boots reminds people to tell their (Submitted photo) transplant worked well. Lee families if they’ve decided to be an completed high school and her organ donor upon death. Lee Last year, Jane Boots and Michele nursing education, and began advises people not to be afraid to Lee, two registered nurses in Mayo working at Mayo Clinic. After that seek family members as donors. Clinic Rochester’s Transplant time, antirejection medication side Living donor transplants are Center, became patients in their effects began taking a toll on the becoming more common. Last year own unit when Boots donated one transplanted kidney. at Mayo Clinic, 204 of 240 kidney of her healthy kidneys after Lee’s transplants were from living kidney began to fail. Their personal A week away from dialysis donors — related and unrelated to experience has given them a The recent transplantation took the recipient. unique perspective in their place in September, 2001 — about a “Sometimes people are afraid professional lives. week before Lee would have had to approach family members, but to begin regular kidney dialysis. the process is such that if someone Sharing the story with patients “We didn’t want to see Michele ends up deciding not to go through Lee and Boots do not discuss their have to go on dialysis,” Boots says. with it, the reason for it is kept experience with every patient. But As Lee neared her transplant confidential,” Lee said. they don’t hesitate if they think it date, her routine had become fairly The donor’s surgery is done will help their patients. simple. laparoscopically, meaning the “If there’s someone who’s “I was working 12-hour shifts, incision is much smaller than with having a hard time, I might tell so I’d spend all of my time at home traditional surgery, and normally them I’ve had a kidney transplant,” just resting up to get ready for my results in a faster recovery time. Lee said. “Most react in next shift,” Lee says. “My ankles Boots and Lee can now truly amazement — especially when I really swelled up after each shift. empathize with their patients. But tell them I was back at work just That’s one of the first things I the best news is that they both feel six weeks after the surgery. I think noticed after this transplant: I have good as a result of their experience it can give them the confidence skinny ankles again!” — Lee because she now has a that they will be back to regular kidney that works the way it’s activities in a short time.” Sharing the kidney supposed to — and Boots because Boots sometimes shares the Even so, in the months leading up she has given the gift of life. story to help donors confirm that to Lee’s transplant, she continually they are doing the right thing. asked Boots if she was sure she “What greater gift can you give?” “I think it helps when they hear it wanted to donate a kidney to a co- asks Boots.

Page 5 How much will my transplant However, there are many factors that can change the estimate. “Many of our patients are COST surprised when they receive a bill for costs not covered by Most people waiting for their insurance company,” says transplant are extremely ill. Dan Owen, a transplant Chances are you don’t financial coordinator. “My remember all of the advice is to check with your information your transplant ME? insurance company before financial coordinator gave you coming to Mayo. We give you a at your initial meeting. • Hospitalization period — broad cost estimate range for At the meeting, you probably physician and facility fees, your type of transplant. But, received a total cost estimate of organ procurement charges because of the diverse nature of your transplant surgery that • Outpatient follow-up charges transplant surgery, and included: for one year unpredictable changes in • Initial evaluation • One year’s supply of insurance coverage, it’s difficult • Donor charges immunosuppressive drugs. to give a precise estimate.“

Additional expenses

• Travel, food and lodging — rarely covered by insurance companies • Other medical expenses not related to transplant surgery • Unpredictable complications — additional or different tests, consultations and treatment • If the number of donors tested, or the number of stem $$ cell collections for particular types of blood and bone marrow transplant exceeds the standard Where can I get help with • If your employer changes the $ company’s insurance plan, additional expenses? there may be changes in your benefit package. • Your social worker can offer assistance in finding suitable accommodations and will work with you to defray other out-of-pocket expenses. • If you are no longer able to work you may be eligible for disability benefits. Page 6 $ What if I can’tpay insuranceWhat if my my monthly bill? If there is a change in your changes? insurance plan, it is important Communicate any hardship to let us know immediately. Call the transplant financial regarding your monthly When an employer chooses a coordinator with whom you payment agreement with the different plan, the whole met. billing department. Call the process must be reevaluated. number on your monthly billing statement to make arrangements.

For More Information...

For more information on Mayo Clinic’s William J. von Liebig Transplant Center, visit us online at:

www.mayoclinic.org/transplantcenter-rst/

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