University of Pennsylvania Health System

Liver Transplant Update | Penn Medicine

Thursday, December 11, 2014

Five Tips for Managing Holiday Stress

The holiday season is a wonderful time for celebration and reflection. But sometimes, amidst the hustle and bustle, stress can threaten to steal the joy that’s typically associated with this time of year.

Whether it's about health concerns, holiday preparations or house guests, it’s important to be proactive in managing stress so you and your loved ones are able to enjoy yourselves and you keep up your mental wellbeing.

Here are some suggestions from the American Psychiatric Association to help you successfully navigate the challenges of the holiday season:

1. Take time for yourself

When you take time to take care of yourself, everyone benefits. For some, that means taking a long walk; for others, it means treating yourself to a massage or listening to your favorite music. All of us need some time to recharge our batteries. By slowing down you will actually have more energy to accomplish your goals.

2. Volunteer

Find a local charity, such as a soup kitchen or a shelter, where you and your family can volunteer. Participating in a giving tree or an adopt-a-family program may help you put your own holiday struggles in perspective. Penn's Transplant House is always looking for volunteers, especially during the holiday season. Call Kirsten King at 215-662-4540 to learn how you might be able to help.

3. Set realistic expectations

No Christmas, Hanukkah, Kwanza or other holiday celebration is perfect. View missteps as opportunities to demonstrate flexibility and resilience. A lopsided tree or a burned brisket doesn’t have to ruin your entire holiday; rather, it might just create a unique family memory.

4. Remember what's important

Holiday advertising can make us forget what the holiday season is really about. When your holiday expense list is running longer than your monthly budget, scale back. Remind yourself that what makes a great celebration is loved ones – not store-bought presents, elaborate decorations or gourmet food.

5. Seek support

Talk about your concerns with your friends and family. Getting things out in the open can help you navigate your feelings and work toward a solution. If you continue to feel overwhelmed, consider contacting your liver transplant social worker, Chris Erickson, to find strategies to address your worries. Chris can be reached at 215-662-4575 or christopher.erickson@uphs.upenn.edu.



Friday, December 5, 2014

Congratulations to Gift of Life Donor Program: 40 Years of Service and Advocacy Excellence

2014 marks an important and special milestone in organ donation and transplantation history in the Greater Philadelphia region: Gift of Life Donor Program’s 40th anniversary.

As our region’s federally designated, non-profit, organ procurement organization (OPO), Gift of Life continues to set national records for the number of organ donors per year, as well as the number of organs recovered per donor – making it one of the busiest and most successful organ procurement organizations in the country and the world.

As we celebrate Gift of Life’s exciting 40-year milestone and ongoing successes, the Penn Liver Transplant team thought it would be the perfect time to review the critical role that organ procurement organizations play in organ donation and transplantation.

What exactly does an OPO do?

An organ procurement organization (OPO) serves as the bridge between hospitals (where families are offered the opportunity to donate) and transplant centers (where people are waiting for organs). The primary responsibility of an OPO is to coordinate the donation process when donors become available and to increase the number of registered donors.

How does an OPO coordinate the donation process?

When there is an opportunity for donation, OPOs are responsible for the following important processes:
  • Evaluation of the potential donor 
  • Verification of donor designation 
  • Contacting the United Network of Organ Sharing (UNOS) regarding the potential donor 
  • Running the UNOS generated list that matches the donor with potential transplant recipients 
  • Coordination of the surgical recovery of donated organs 
  • Coordination of the transportation of donated organs to the transplant centers of the intended recipients. 
For more information about the donation process, check out this helpful video from the Organ Procurement and Transplantation Network (OPTN).

What additional roles do OPOs play in the donation process?

The work of an OPO actually begins before a donor becomes available and continues after donation takes place. Before donation, OPOs work to education the community and dispel myths and misconceptions that keep families from saying “yes” to donation.

Another important pre-donation responsibility is providing a variety of professional education opportunities for the various members of the healthcare team who support families making end-of-life decisions.

After donation has occurred, many OPOs have dedicated teams to support donor families through the initial stages of the grieving process. One important aspect of family support is the coordination of communication between transplant recipients and donor families.

Additional information about Gift of Life Donor Program can be found on its website as well as its Facebook page.

Wednesday, November 26, 2014

Thanksgiving: The Perfect Time to Say “Thank You”

The holiday season is often a time for us to reflect on how the year unfolded and look forward to what the coming year may bring. For liver transplant recipients, Thanksgiving presents a special occasion to express gratitude for the gift of life made possible by the generosity of organ donors and their families.

A Difficult Thank You

Writing to the family of your organ donor can be tough. It may be hard to find the right words to express your gratitude and describe just what the gift of life has meant to you and your family. Knowing that while you may be celebrating the gift of receiving your transplant, someone else will be remembering a loss makes it even more challenging. Donor families find these letters very meaningful; a simple thank you is all it takes to help a stranger grieve.

Getting Started

If you aren't sure where to start, Gift of Life recommends the following as a guideline for your letter:
  1. Include only your first name and only the first names of your family members (if you choose to include them).
  2. Acknowledge the donor family's loss and thank them for their gift.
  3. Discuss your family situation such as marital status, children or grandchildren. 
  4. Describe the type of transplant you received. (One donor may have benefited many people.)
  5. Use simple language. 
  6. Avoid complex medical terms. Don't give too much detail about your medical history.
  7. Describe how long you waited for a transplant. What was the wait like for you and your family?
  8. Explain how the transplant has improved your health and changed your life. Did you return to work, school or accept a new job? Did you celebrate another birthday? Did your son or daughter marry? Did you become a parent or grandparent?
  9. Share your hobbies or interests.
  10. Consider omitting any religious comments, since the religion of the donor family is unknown.
If writing a letter doesn’t feel like a comfortable option for you, Gift of Life also offers an opportunity to electronically send a note to the family of your donor by visiting the Family Support Services web page and completing the online form. A third option is to mail a nice thank card to the family of your donor with a brief acknowledgement of their loss and expression of gratitude for their gift.

The Correspondence Process

Correspondence to donor families should be mailed to the Gift of Life Family Support Services team. It will be reviewed by them before being sent to the donor family. The Family Support Services team is a group of specialists who help guide the donor families through the many complex emotions associated with donation, loss and grieving. Their relationship with donor families is similar to your relationship with your lung transplant coordinator. They are able to anticipate support needs that an individual or family may have.

The Gift of Life Donor Program’s privacy policy is in place to make sure everyone is sensitively supported throughout this communications process. This policy prohibits the following information from being shared in recipient correspondence:
  • Your address, city or phone number 
  • Your physician's name 
  • The name or location of the hospital where you received your transplant 
If any such information is included in your letter, Family Support Services will edit the letter prior to forwarding it to your donor family. Should Gift of Life have questions about the content of your letter, the Family Support Services team will contact you directly.

Letters or cards should be sent to:

Family Support Services
Gift of Life Donor Program
401 N. 3rd Street
Philadelphia, PA 19123

What Happens After the Letter Is Mailed?

Every family manages grief and the donation experience differently. It's not possible to predict whether you will receive a response from your donor’s family. For some families, corresponding with the recipients of their loved one’s donation is comforting. Others may prefer not to write back for personal reasons. In either case, “thank you” is as important to say as it is to hear. No matter when you were transplanted, this is a great time to express your gratitude.


Friday, November 21, 2014

Penn Transplant House Wish List

Being far from home when you need medical care is never easy. When that happens during the holidays, it can be even more challenging. If you’d like to help us offer additional hospitality to the guests at the Clyde F. Barker Transplant House, we’re making it simple. Donations will be accepted on Monday, December 8th at the Penn Transplant Institute’s 2014 Patient Holiday Party. Just look for the Penn Transplant House table and add your donation to the collection.

“These items will help us to offer additional hospitality and care to our guests,” said Transplant House manager, Kirsten King. “Donations like this really help us transform the space from a house to a home, and that’s particularly important during the holidays.”

If you have any questions about the holiday wish list, Kirsten can be reached at 215.662.4540 or Kirsten.King@uphs.upenn.edu. Donations can also be delivered directly to the Clyde F. Barker Penn Transplant House at 3940 Spruce Street, Philadelphia, PA 19104.

The Transplant House Wish List

Here’s a list of items that would be helpful for patients whose transplant journey takes them hundreds of miles from home:
  • Bathroom scales (12—one per guest room)
  • Bellman’s luggage cart
  • Magazine and newspaper subscriptions (Lifetime, Newsweek, National Geographic, Martha Stewart, etc.)
  • Playstation 3 with four controllers and games
  • Quilts (twin or queen-size beds, in neutral, solid color or paisley print) 
    • Pottery Barn: Kennedy Patchwork Quilt & Shams 
    • Pottery Barn: Malin Patchwork Quilt & Shams 
    • Pottery Barn: Claire Patchwork Quilt & Shams 
    • Pottery Barn: Pick-Stitch Quilt and Shams (porcelain blue and flagstone) 
  • Aluminum foil—heavy duty, large rolls 
  • Non-stick baking sheets—Wilton or Calphalon
  • Cake/cupcake storage containers—Rubbermaid 
  • Coffee mugs—Pier 1 Imports Metallic Geo Mug Set
  • Dish racks (3)—Polder Model KTH-615, four-piece advantage dish rack system 
  • Disposable coffee cups with lids—Dixie or Solo brands 
  • KitchenAid black box graters with storage (3)
  • Knife sharpener—Chef’s Choice Hybrid 250 Diamond Hone 
  • Madesmart expandable cutlery storage 
  • Pyrex Storage Plus 20-piece container set with color lids 
  • Liquid measuring cups 
  • Heavy-duty Saran Wrap
  • Serving dishes (large bowls and platters)—Pottery Barn, Crate & Barrel, etc (neutral/ earth tones, and various sizes) 
  • Toaster—Frigidaire Widemouth Professional, two or four-slot
  • Tongs, basting brush, cooking thermometer, etc.
  • Wire cooling racks 
  • Zip-lock bags
  • Nightlights for guest room bathrooms (12)—Forever Glo LED Nite Lite 
  • Hampers (12)—collapsible, cotton, 12”x 12”x 30”
Thank you for including the Transplant House in your holiday gift giving. We look forward to seeing you on December 8.




Thursday, November 6, 2014

You're Invited to the Transplant Patient Holiday Party!

Before your calendars start filling up with holiday celebrations, we wanted to make sure that you pencil in the 2014 Penn Transplant Institute’s patient holiday party. 

The holiday party will take place on Monday, December 8 from 5:00 to 7:30 p.m. at the Smilow Center for Translational Research, 3400 Civic Center Boulevard, Philadelphia, PA 19104. Parking will be available in the Perelman Center for Advanced Medicine.

We hope your schedules will allow you to join us for a lovely evening of fun, food and celebration. For those of you who haven’t yet joined us for a holiday party, one unique aspect of it is the guest list. In addition to pre- and post-liver transplant patients, our guest list includes patients who are connected to Penn through heart, lung, kidney and pancreas transplantation – making the evening a great opportunity to see friends you’ve made along your transplant journey and even make some new ones. Plus, you never know who else will turn up – there may even be some cameo appearances from Penn Liver Transplant team members!

This year we’re adding a photo booth to the festivities, so if you’d like a snapshot souvenir come prepared for the camera. The photo booth candid shots will be used on the Penn Transplant Institute’s Facebook page. Be sure to find us on Facebook before the party, so you can share your snapshot with your friends and family.

In addition to the festivities and delicious complimentary food, there will be an opportunity to share some holiday cheer with the Clyde F. Barker Penn Transplant House. If you’d like to drop off a donation by check, look for the Transplant House table where a team member will be to accept your donation. Checks can be made payable to the Trustees of the University of Pennsylvania. Please put "Transplant House" on the memo line. Stay tuned for more details next week on how you can help the Transplant House this holiday season.

To attend the patient holiday party, kindly R.S.V.P. by November 28 by calling 1-800-789-PENN (7366). For more information about the party, please contact Denise DuPont, manager of Outreach and Communications, at 215-873-7983 or denise.dupont@uphs.upenn.edu.

We look forward to seeing you on December 8!

Wednesday, October 22, 2014

Yes! Beat Liver Tumors Symposium


At Penn, we understand that there are many challenges to navigate when a liver tumor has been identified. To help you and your loved ones learn about the options and resources that are available to support you, a special education session will be offered in Philadelphia on Friday, October 24, 2014 at the Hilton Hotel on City Line Avenue.

The free session includes helpful information on a variety of treatment options and encouraging presentations from people who have received a cancer diagnosis, completed successful treatment and are now living full and active lives.

In addition to the many Penn Medicine physicians and nurses who will be sharing their expertise and knowledge, Penn transplant hepatologist, Maarouf Hoteit, MD, will discuss “Liver Transplantation for Hepatocellular Carcinoma.”

Who Should Attend?

This session can be helpful for those newly diagnosed, currently in treatment or who are long-term survivors -- as well as family members and caregivers of those affected by liver tumors. Attendees will receive the latest information about research, treatment advances, clinical trials and survivorship issues.

When and Where

Event: Say Yes to Hope: Beat Liver Tumors
Date: Friday, October 24, 2014
Time:  8:30 a.m. to 11:00 a.m.
Location: Hilton Hotel, 4200 City Avenue, Philadelphia, PA

Parking for this event provided free of charge.

The Agenda

8:30 a.m.: Registration and Continental Breakfast
9:00 a.m.: Welcome Survivor Speaker, Suzanne Lindley
9:10 a.m.: Physician and NP Panel Presentations
10:15 a.m.: Patient Perspectives
10:40 a.m.: Q & A

Speakers

Penn’s Abramson Cancer Center health professionals will highlight news in diagnosis and disease management. The presenters and panelists include:

Deepak Sudheendra, MD
Interventional Radiologist, Program Emcee

Nevena Damjanov, MD
Medical Oncologist
Personalized Medicine: Targeting the Tumor

Robert Roses, MD
Surgical Oncologist
Going for Cure: The role of Surgery for Primary & Metastatic Liver Tumors

Maarouf Hoteit, MD
Hepatologist
Liver Transplantation for Hepatocellular Xarcinoma

Edgar Ben-Josef, MD
Radiation Oncologist
Radiotherapy for Liver Cancer

Deepak Sudheendra, MD
Interventional Radiologist
Interventional Oncology: Tumor-directed Treatments Without Incisions

Elizabeth Prechtel Dunphy, CRNP, MSN, AOCN
Nurse Practitioner, Medical Oncology

Diana Van Houten, CRNP
Nurse Practitioner, Interventional Radiology

The Say Yes to Hope: Beat Liver Tumors seminar is supported through a charitable contribution from Sirtex Medical, Ltd.

To register or for more information, visit BeatLiverTumors.org or call 877.937.7478.

Friday, October 10, 2014

Meet the Team: Linda Wood, RN, BSN

Penn live liver donor coordinator, Linda Wood, RN, BSN, has provided care to patients as a registered nurse for more than 20 years. She took some time to share with us a bit about how she got started in transplantation and how she feels about her current role serving people who are interested in being evaluated as live liver donors. Here’s a snapshot of what inspires Linda in her work with Penn live donors and their families.

How long have you been providing care for live donors?

I have specialized in living donation for 12 years. I find it so rewarding, and I'm in constant awe of these special people who step forward to give such a special gift to a loved one or friend.

What first interested you in transplant?

It’s hard to believe that I have been a nurse for 23 years – I can’t believe I have done anything for that long! My background was
always surgical intensive care, and I worked in a transplant intensive care unit for a few years.

Transplant patients proved to be a very special group of patients, and I felt like I had an opportunity to witness the miracle of medicine every day. I was later offered a position as a transplant coordinator, which enabled me to see another side of the transplant world. I knew then I had found home.

What do you find most rewarding about your work?

There are a lot of rewarding aspects to this position. Two things come to mind. The first is to hear from a donor or receive a picture of a donor and their recipient – after the surgery – after recovery. It’s great to see the joy in their eyes and see how well they both look. The thought that comes up next is how rewarding it is to see a donor the morning after surgery – and hear them say, “I did it..! I can’t believe I did it!”

It’s exciting because it is a life renewed for the recipient, and the donor made that happen. To feel that I helped facilitate that and had a part of that, in some small way, makes this work very special.

What’s the most interesting part of providing care to people interested in live liver donation?

Helping to bring their desire, their hope, into a reality. We are helping people to help other people. Educating them, guiding them, protecting them in this process is our paramount goal. I love what I do.

Find out more about organ transplant programs and services at Penn.