TRANSPLANT NEWS
INSIDE
A newsletter from Transplant Services at UPMC Pinnacle // Winter 2020
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20 Years of Kidney Transplants at UPMC Pinnacle Threads of Love
Spotlight: UPMC Pinnacle's Transplant Team
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Transplant Medications
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Transplant Fundraising
Traveling with Your Medications After Transplant Page 4
Hepatitis C Kidney Transplants Page 10
UPMCPinnacle.com/Transplant
OF KIDNEY TRANSPLANTS AT UPMC PINNACLE // BY REBECCA BROWN
SOME OF OUR MILESTONES OVER THE PAST 20 YEARS: It is hard to believe, but this year we are celebrating 20 years of providing transplantation services to patients in the central Pennsylvania area! Since starting our program in March 2000, UPMC Pinnacle has performed more than 1,200 transplants. We could not have done this without the generosity of our living kidney donors and the families of deceased donors who made the important decision to provide the gift of life by supporting organ donation. We have participated in clinical research trials for medications that have advanced the science of transplantation and have now become standard care. We work closely with our referring physicians and dialysis units to provide integrated care for our patients in all phases of care — before, during, and after transplantation. Our team has partnered with several community organizations to promote awareness of chronic kidney disease and organ donation. Our partners in these endeavors include the Gift of Life Donor Program and the Kidney Foundation of Central PA. The faces of our transplant team may have changed throughout the years, but our commitment to our patients has remained constant. Some or our staff have been here since our program started — Amy Morrissey, Paula Kratzer, Becca Brown, Kim Barnett, and of course, our leader, Dr. Harold Yang. It is Dr. Yang’s vision and leadership that have made this program so successful. We have had the opportunity to care for thousands of patients over the past 20 years, many of whom have traveled from across the country and some from outside the United States. While we are proud to have been chosen because of our advanced, quality care, we are equally as honored to be considered by many of you as an extension of your families. Thank you for being part of our remarkable history!
March 2000
The first living donor kidney transplant was done at Harrisburg Hospital (now UPMC Pinnacle Harrisburg). That’s right, our first transplant was from a living donor! The first deceased donor kidney transplant happened five days later.
June 2004
The transplant office moved from Brady 6 to Brady 8,
2006
HLA (Human Leukocyte Antigen) lab opened in Brady 7.
2009
Participated in our first paired exchange kidney transplant as part of the National Kidney Registry's paired donor exchange program. It involved eight pairs of donors and recipients coast-to-coast.
2011
We hosted our first Night at the Harrisburg Senators baseball game.
2013
Our first transplant calendar was released, highlighting living donors and recipients.
2013
We began participating in the Hospital and Healthsystem Association of Pennsylvania (HAP) Donate Life Hospital Challenge. We have attained at least gold status each year since then for our efforts to raise awareness and encourage organ donation.
2014
We participated in the largest kidney paired exchange chain to date — 35 PAIRS!
2017
PinnacleHealth System became part of the UPMC health system, and Harrisburg Hospital became UPMC Pinnacle Harrisburg.
2018
We participated in the first “internal” paired exchange transplant between UPMC Pinnacle, UPMC Presbyterian, and UPMC Hamot.
TRAVELING WITH YOUR MEDICATIONS AFTER TRANSPLANT // BY YANMEN YANG-LIU, PHARMACIST
With the new year upon us, travel may be in your plans. It is important to be prepared and know what to do with your medications when traveling.
Travel Tips: 1. Remember to keep us in the loop. Contact the transplant team in advance of any travel plans. ○ We strongly discourage international travel for up to one year after transplant due to the increased risk of infection. Domestic travel is generally safe three months after transplant, provided you are attentive with proper hand washing and care. ○ Depending on the area you travel to, we may have specific recommendations for staying safe and avoiding infection, including special vaccinations or medications. ○ You may be referred to a travel clinic for further recommendations.
2. More is ALWAYS better! Always bring enough medication to cover more than your entire trip. ○ This can reduce the chance of running out of medication if travel delays occur. ○ Depending on your insurance plan, you might be able to get early refills on your prescriptions for travel reasons. Reach out to your insurance company and/or pharmacy to see what your plan allows. ○ DO NOT purchase any medications from other countries due to potential differences in ingredients. 3. Have your medications handy. If you are traveling by plane, always keep your medications (both prescription and nonprescription) with you in a carry-on. ○ Depending on your medication schedule, you may need to take your pills during your flight.
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TRAVELING WITH A TRANSPLANT 101: QUICK FACTS 1. Alarms/reminders: Phone alarms and reminders can help keep you on track of taking your medications. Remember, some places may have time zone changes! 2. Food and water: ALWAYS remember to avoid unwashed fruits or street food! Try to find out ahead of time whether the water is safe to drink; when in doubt, drink bottled water. 3. Hygiene: Bringing antibacterial hand wipes or an alcohol-based hand sanitizer containing at least 60 percent alcohol will help to prevent infection. However, frequent hand washing is always best. 4. Insect repellent: Use products containing DEET, picaridin, or other EPA-approved insect repellents to protect yourself from insect bites. 5. Sun protection: Protect your skin and lower the risk of skin cancer with hats, sun-protective clothing, and broad-spectrum (UVA and UVB rays) sunscreen containing SPF 30 or more.
4. Stay organized. Keep your medications in their original bottles and keep an updated list of all your medications and dosages in your wallet or purse. ○ Having the original bottles can reduce questions from inspectors while going through airport security. It can also make it easier to keep an eye on how much medication you have left and get refills if you somehow run out. ○ Your list should also include any allergies, names and phone numbers of your doctors, and names and phone numbers of your emergency contacts. 5. Be aware and plan ahead. Have an idea of nearby pharmacies, hospitals, or transplant centers. ○ Staying prepared will be helpful for you and your travel buddies if you need medication refills or require emergency information/services.
References: 1. Immunocompromised Travelers - Chapter 5 - 2020 Yellow Book | Travelers' Health | CDC. (2019). https://wwwnc.cdc.gov/travel/ yellowbook/2020/travelers-with-additionalconsiderations/immunocompromised-travelers 2. Buchan CA, Kotton CN, AST Infectious Diseases Community of Practice. Travel medicine, transplant tourism, and the solid organ transplant recipient. Clin Transplant. 2019 Sep;33(9):e13529.
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Threads of Love // BY KELSEY KARPINSKI, BSN, RN
Gift of Life honored deceased donors at UPMC Pinnacle on Sept. 24, 2019, with a “Threads of Love” memorial quilt. The “Threads of Love” movement started back in 2000 by the Gift of Life Donor Program and its donor family volunteer group, Hearts of Gold. It’s an opportunity to honor and remember all those who have given the gift of life. “Families are encouraged to create a quilt square in memory of their loved one to become a part of our growing number of quilts.” — Gift of Life
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Pictured above: Gift of Life staff, donor family representatives, and donors/recipients Photos by: Eric Tuttle, taken at UPMC Pinnacle Harrisburg Citation: Threads of Love Quilt. (n.d.). Retrieved October 2019, from https://www.donors1.org/families-ofdonors/threads-of-love-quilt/.
S P OT L I G H T O N U P M C P I N N AC L E ’ S T R A N S P L A N T S E RV I C E S AMY ZOOK, MSW INDEPENDENT LIVING DONOR ADVOCATE (ILDA) Amy has been the Independent Living Donor Advocate (ILDA) for Transplant Services since 2013; however, she has been with UPMC Pinnacle since 2003. Until this month, Amy's primary role was that of maternal child health social worker under the care management department. Despite a love for the maternal child health population, recent regulations changed the role of the ILDA, and she is now involved with all living donors, starting from their first phone call expressing interest in donation. She advocates for/with living donors to ensure they are supported and educated throughout the entire donation process. Amy is looking forward to her expanded ILDA role and developing closer relationships with our living donors. In her free time, Amy enjoys spending time with friends and family, including her son, Kaeden, and their three young cats, Tillie, Tucker, and Teddy.
JACKIE STIFLER, BSN, RN LIVING DONOR COORDINATOR Hello! I am Jackie Stifler, one of the newest members of the UPMC Pinnacle transplant team. I began my new role as a living donor coordinator in May 2019. I am a 2012 graduate of Eastern Mennonite University with a bachelor’s degree in nursing. My nursing career began in Harrisonburg, Virginia, as a medical surgical/orthopaedic nurse. In 2014, I returned to Pennsylvania and started working for DaVita Dialysis in Lebanon. I worked for DaVita for five years before joining the transplant team. When I’m not working, I enjoy being a wife and mother. My husband and I have been married for five years. We have two young daughters who keep us very busy. I love being able to care for our healthy, selfless donors who have chosen to graciously give the gift of life to a loved one, friend, or someone they have never met. It truly has been an amazing experience thus far and I look forward to what the future holds for my career here with the transplant team.
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Transplant Medications // BY RAHUL SAMUDRALWAR, PHARMACIST There are many new and different medications that are given after transplant. Sometimes it can be difficult remembering what everything does. Listed below are some quick and easy facts about one of the most frequently given medications.
Tacrolimus (brand name: Prograf®) • How does it work? ○ It suppresses the immune system — basically it “hides” your newly transplanted organ from your body, so your body doesn’t think it needs to attack it and get rid of it. • How do I take this medication? ○ Take this medication twice daily 12 hours apart. ○ DO NOT crush or open capsules when taking. ○ T his medication can be taken with or without food, just be consistent with how you take both doses. ○ Y ou will have your blood drawn frequently so we can make sure you have enough of the medication in your body. ○ D O NOT take your medication in the morning before your clinic appointment or before any scheduled lab draws, but REMEMBER to bring that medication with you to your appointment so you can take it afterwards. • What are some potential side effects? ○ Tremors, headaches
○ Hair loss
○ High potassium, low magnesium
○ High blood pressure, high blood sugar
• What if I miss a dose? ○ IT IS VERY IMPORTANT TO NOT MISS A DOSE, but we do understand that life can happen. If you do miss a dose, you need to contact your post-transplant coordinator as soon as possible. They will explain the next steps to you. ○ DO NOT double up on doses.
So, what do transplant pharmacists really do? Transplant pharmacists play a huge roll on the transplant support team. They work one-on-one with patients before and after transplant, educating and explaining new or old medications. They help patients stay on track with their medication regimen and avoid any potential side effects after transplant. If you have any questions or concerns about transplant medications, please reach out to your transplant pharmacist, they are always around to help!
• What are some general tips when taking tacrolimus (Prograf)? ○ A LWAYS contact the transplant team if you start feeling any new or worsening side effects listed above. ○ ALWAYS avoid grapefruits, grapefruit juices, pomegranates, or pomegranate juices. ○ ALWAYS contact the transplant team before taking any new prescribed or over-the-counter medications.
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Transplant Fundraising // BY ANATHA KAYE AND MELINDA SOLES, FINANCIAL COUNSELORS
For some patients, out-of-pocket costs for the transplant can be complex and complicated. You have to be financially prepared for medication costs and living expenses while recovering from your transplant. Fortunately, there are many different fundraising options available for those who need it. The first thing you need to ask yourself is, what type of assistance do I need?
Not For Profit Fundraising Not for profit fundraising typically charges zero to five percent administration fees for all funds raised. Any money raised through a nonprofit organization is not included as income and will not affect any patient assistance programs you may currently be receive now or in the future. These programs usually cover insurance premiums, medication costs, travel, lodging, gas, and food.
• Insurance premiums
• Living expenses
Some popular examples of this type of fundraising are:
• Cost of medications
• All of the above
• COTA (Children’s Organ Transplant Association) www.COTA.org Typically handles children, but they will also cover anyone with polycystic kidney disease.
The answer to this question will help determine which fundraising option is best for you. There are two options; below are the highlights for each.
For Profit Fundraising This can be used for cost-of-living expenses such as utilities, food, rent, etc. If you use this type of fundraising option, the government will look at these funds as taxable income. • If you are receiving any type of patient assistance, this WILL affect your income level and could disqualify you for these programs. The most popular example of this type of fundraising is GoFundMe, the leader in free online fundraising. Personalize and share your story to others for support. To access this site visit www.GoFundMe.com.
• Help Hope Live www.HelpHopeLive.org Covers all ages and all diseases. This organization will also allow for emergency assistance for living expenses (mortgage, rent, and utilities). • NFT (National Foundation of Transplants) www.Transplants.org Allows donors to fundraise for their living expenses. Therefore, this is not only for the transplant recipient, the donor can also use this organization. Please understand that everyone is unique in their own needs and each person’s individual situation will vary. To find out which option may be best for you and for further information, call your transplant financial coordinator or visit the websites listed above.
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HEPATITIS C KIDNEY TRANSPLANT // BY MANPREET SINGH, MD, MEDICAL DIRECTOR OF TRANSPLANT SERVICES
Kidney transplant is the preferred therapy for the treatment of end-stage kidney failure as compared to dialysis. There is a huge gap between supply and demand due to the critical shortage of donated organs. As the number of patients with chronic kidney disease continues to rise, we need to develop new strategies to meet this demand. One of the recent proposals is to transplant kidneys from hepatitis C virus-positive (HCV) donors into hepatitis C virus-negative recipients.
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Hepatitis C is a virus that infects the liver. Most people who are infected with the virus do not experience symptoms when they first get the virus. Some patients develop flu-like symptoms within a few weeks to months, including yellowing of the skin and eyes. These donors have positive blood tests for antibodies against the virus and the virus itself. Rarely, the early phase of hepatitis C can cause severe liver damage. Over the years, hepatitis C can lead to liver scarring known as liver cirrhosis. Liver cirrhosis can lead to liver failure, cancer, or death.
In the past, hepatitis C treatment regimens were considered unsuccessful as they were poorly tolerated by most patients. The creation and arrival of direct-acting antivirals (DAAs) has transformed hepatitis C treatment, with cure rates of greater than 95 percent as reported in the literature. It raises the possibility of using hepatitis C-positive kidneys for transplantation in hepatitis C-negative recipients. The original THINKER trial (Transplanting Hepatitis C Kidneys into Negative Kidney Recipients) transplanted HCV-positive organs into 20 HCV-negative recipients. All of the patients were cured of hepatitis C after kidney transplantation. Similar outcomes were shown by EXPANDER trial (Exploring Renal Transplants Using Hepatitis C-Infected Donors for HCV-Negative Recipients) in 10 patients after transplant from HCV-positive donors. These trials led several other centers to start using hepatitis C-positive donor kidneys for hepatitis C-negative recipients. To date, no major adverse outcomes have been reported from any center using HCV-positive donors into negative recipients. The average wait time for a deceased donor kidney transplant is more than five years. If a patient chooses to accept an HCV-positive kidney, it can shorten the wait-time significantly. Reducing time spent on dialysis would have a major impact on long-term outcomes in these recipients. Often these donors are young and otherwise healthy. If patients choose to accept a kidney from an HCV-positive donor, they would most likely develop a hepatitis C infection. So it is important to ensure that they would receive timely treatment for hepatitis C posttransplant. Using these organs has allowed more deceased donor transplants. UPMC Pinnacle has begun accepting HCV kidney donors for negative recipients as it has become a standard of care. If you are interested in learning more, please reach out to your transplant coordinator.
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The average wait time for a deceased donor kidney transplant is more than five years. If a patient chooses to accept an HCV-positive kidney, it can shorten the wait-time significantly.
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UPMC Pinnacle PO Box 8700 Harrisburg, PA 17105-8700
THINGS TO LOOK OUT FOR LATER THIS YEAR! January to April: Donate Life Hospital Challenge
April 19: Gift of Life Donor Dash
UPMC Pinnacle is once again participating in the Hospital and Health System Association of Pennsylvania (HAP) Donate Life Hospital Challenge. Be on the lookout for events and advertising that showcases our transplant patients and shines a light on the importance
To register for the Gift of Life Donor Dash, visit Donors1.org/Dash2020.
of organ donation.
April 4: UPMC Donor Run/Walk City Island, Harrisburg Mark your calendars for this brand new event! UPMC Pinnacle’s own donor dash helping to honor, celebrate, recognize, and raise awareness about living donation and kidney transplant. More details to come!
Philadelphia
July 17 to July 22: Transplant Games of America New Jersey Meadowlands Community, New Providence and East Rutherford, NJ Transplant Games of America is a festival-style event produced by the Transplant Life Foundation for individuals who have undergone lifesaving transplant surgeries. Competitive events are open to living donors, organ transplant recipients, bone marrow, corneal, and tissue transplant recipients. (Transplant Games of America, 2013)
UPMC complies with applicable Federal civil rights laws and does not discriminate on the basis of race, color, national origin, age, disability, or sex. (02/20) MC