Bone Marrow Transplant Patient Newsletter

Transcription

1 Bone Marrow Transplant Patient Newsletter Look no further ISSUE 1

2 BONE MARROW TRANSPLANT BONE MARROW TRANSPLANT PATIENT MEETS A TRUE HERO Her unrelated donor Sherry s only choice was to wait for a non-related donor to be identified from the national marrow donor registry. In 2008, Sherry Bryant of Madison, Minn., was faced with the greatest challenge of her life a life-threatening diagnosis of leukemia. I was at 85 percent blast cells, and after three rounds of chemo, my blood count still held at 85 percent blast cells. Leukemia is considered acute when blast cell count is over 20 percent. She needed a bone marrow transplant, but had no siblings who could donate healthy bone marrow for this procedure. Sherry s only choice was to wait for a non-related donor to be identified from the National Marrow Donor Registry. In the meantime, she underwent ongoing chemo treatment to stave off the cancer s progression. It was called Vidaza, which literally means life for the day, Sherry said. The first potential donor identified was only a 60 percent match, and her doctor, Dr. Vinod Parameswaran of Avera Medical Group Hematology & Bone Marrow Transplant, recommended she hold out for a closer match. He wanted to see better numbers. Some 16 years earlier, in North Carolina, a woman named Laura had undergone a cheek swab to have her name listed as a potential donor. Laura, an EMT, wanted to help a firefighter in her community who had been diagnosed with leukemia. At that time, she wasn t a match to help him, but she kept her name in the national registry. When she got the call that she was a close match for a patient, she was still willing to give the gift of life even though she didn t know anything about the person who would benefit from her bone marrow. The transplant of Laura s healthy stem cells into Sherry s bloodstream in July of 2008 was a success, and today Sherry is in remission and in good health. I have graft vs. host disease, and have received photopheresis treatments for that, Sherry said. She also developed a blood clot around her port, which was situated right over her heart, so the clot had to be dealt with before it would dislodge and cause any harm. But that wasn t related at all to the leukemia. Sherry felt a great deal of gratitude toward her unknown donor, but because of privacy rules, she had no idea who it was and could not personally express her thanks. When -2-

3 asked if she wanted to fill out an information sheet in case her donor wished to reveal his or her identity, she was more than willing. I then received a card that my donor had sent. She gave her phone number, and we talked over the phone and became acquainted, Sherry said. She said she didn t want any thanks. Seeing that my transplant has been successful was thanks enough. The two decided to meet, and Sherry and her husband, Richard, flew to North Carolina. Sherry says she and Laura share a bond that is different from any other relationship. It was wonderful. She is a very humble person. She said she didn t want any thanks. Seeing that my transplant has been successful was thanks enough. She didn t want to be viewed as a hero, but that s what she ll always be to me. She did something so incredible for me. She gave me the gift of a lifetime the gift of life, Sherry said. Sherry s gratitude also extends to Avera. There is a higher power who was guiding me. It was just as if I was being directed. When I met Dr. Vinod, I knew he was the person I should listen to, and who would lead me through this. I m so grateful for everyone, from the doctors, to the nurses and social workers. They were a second family to me as I went through this journey, which was a miracle in the works, she said. They ve got a dream team at Avera it s an incredible gift to this area, Sherry said. We are very fortunate to have this wonderful facility and transplant program, right in our own backyard in the Midwest. Sherry went through what many cancer patients do loss of strength and appetite, and loss of her hair. She remembers becoming more and more ill while receiving high doses of chemotherapy to kill off her diseased bone marrow. Yet my spirits were really high because I knew I had this match. I knew things were about to change dramatically for me. Today, it s her goal to share hope with others who find themselves where she was facing a life-threatening diagnosis. When in the hospital or the Avera Cancer Institute, she s not shy about going up to someone who appears to be dealing with a difficult diagnosis in order to offer encouragement, and a hand on the shoulder. Maybe their situation isn t as hopeless as it seems, Sherry says. A cancer diagnosis is not like the flu you have it and you re over it. It s a long process. I have come back from a very difficult cancer. I want others to know that there are people who are willing to walk with you every step of the way. There are so many things that can be done to help you. Do not give up without a fight there is hope. You ll never be sorry for giving it your all. To learn more, go to: AveraTransplant.org -3-

4 HAPPENINGS Research shows that stem cells from younger donors lead to more successful transplants and that doctors choose registry members between the ages of 18 and 44 years old more than 90 percent of the time. This is part of the reason the guidelines were adjusted by the National Marrow Donor Program recruitment department. These adjustments include that only people between the ages of 18 and 44 will be allowed on the registry at no cost and that those between 45 and 60 will be charged $100 to join. So overall, if you are between the ages of 18 and 60, meet the health guidelines and are willing to donate to any patient in need, you can still join the registry because everyone on the registry is critical to saving lives. The age guidelines are just in place to protect donors and provide the best treatment for patients as listed here: NEW NMDP DONOR RECRUITMENT GUIDELINES Donor safety: As one ages, the chances of a hidden medical problem that donation could bring out increases, placing older donors at increased risk of complications. So, for safety reasons NMDP has set age 60 as the upper limit. It is important to note that the age limit is not meant to discriminate in any way. To provide the best treatment for the patient: Research shows that cells from younger donors lead to more successful transplants. So if you do not meet the guidelines but are still interested in contributing, there are still many ways to help save lives: you could make a financial contribution of any amount, volunteer or even just spread the word about the need for younger registry members. With the remarkable generosity of all supporters like you, more patients will have hope of finding their life-saving match! Please visit the website to learn more: BeTheMatch.org. -4-

5 DONOR RECRUITMENT SUCCESSES IN 2012 The National Marrow Donor Program (NMDP) is an organization that provides lifesaving stem cell donor sources for patients that need an allogeneic stem cell transplant and do not have a related donor match. NMDP is the leader in the nation for providing this service and we are happy to say we have used them for years to find donors for patients. But, even with millions of people on the registry that are willing to donate their peripheral stem cells, bone marrow or umbilical cord blood, there unfortunately are still cases in which we are unable to find a match for patients. This just goes to show the importance of recruitment to build the registry so that every patient may have the opportunity to have a second chance at life through a transplant. That s why Avera is committed to this effort and teams up with NMDP for donor drives. NMDP has helped with organization, marketing and communication aspects to make our donor drives successful. We have made appearances in the last year at events such as the Sioux Falls Marathon (74 donors added), Augustana College (125 donors added) and South Dakota State University (300 donors added). Avera is proud to have contributed to this life-saving program, where every person counts! -5-

6 FOCUS ON THE CAREGIVER: NEW CAREGIVER COMPANION PROGRAM Be The Match (also known as the National Marrow Donor Program or NMDP) has recently added a program to provide support to bone marrow transplant caregivers. The Caregiver s Companion Program is now available for the primary caregiver of someone who is receiving any type of bone marrow transplant. The program includes a trained Be The Match coach who provides contact by phone to listen and support caregivers. A caregiver toolkit is also provided to each caregiver, including a book which can help each caregiver stay emotionally, physically and mentally strong; a wellness journal; a tote; a water bottle; and a pedometer. For anyone interested in learning more or enrolling in the program, please contact Melanie Hericks at PLEASE KEEP US INFORMED Please notify us at or if you have an address change so you can continue receiving our newsletters. QUEEN S CORNER We hope this insert can help put a smile on your face: whether through positive thinking or humor, Patti Swenson, RN (known by all) will be offering this entertainment section for each newsletter. Enjoy! This month s entry is from A Daybook of Positive Thinking, Daily Affirmations of Gratitude and Happiness : There is good in life every day. Take a few minutes to distract yourself from your concerns long enough to draw strength from a tree or to find pleasure in a bird s song. Return a smile; realize that life is a series of levels, cycles of ups and downs some easy, some challenging. Through it all, you will learn; you will grow strong in faith; you will mature in understanding. The difficult times are often the best teachers, and there is good to be found in all situations. Reach for the good. Be positive, and don t give up. Pamela Owens Renfro -6-

7 HAPPENINGS BMT CONNECTIONS Avera s Bone Marrow Transplant Support Group, BMT Connections, is a group that is welcome to anyone affected by bone marrow transplants. We especially encourage our patients and their loved ones before, during and after transplant to come join in the activities and discussion, to not only receive support but to offer it to up to others going through the same journey. BMT Connections meets the second Thursday of every month at 4 p.m. in the Prairie Center. The Prairie Center is located at 1000 East 23rd St. on the Avera McKennan campus. Watch for invites mailed each month, see you there! Some future topics listed below. Medication side effects Provider session Fitness/yoga Dietary/cooking class Open discussion HOLIDAY OF HOPE TREE The Transplant and Oncology Unit (3 East) staff took part in Avera McKennan s Holiday of Hope project in December by adopting two families to help make their holidays merry and bright. Toys, clothes and gift cards were donated, wrapped and delivered on Christmas Eve. It was an amazing experience! WALSH FAMILY VILLAGE HOLIDAY MEAL Transplant Institute staff also wished to give back this holiday season and chose the Walsh Family Village as a most deserving venue. Many times, the patients and their loved ones staying in these homes are going through some of the most difficult times of their lives; we feel very fortunate that Avera McKennan is able to provide this comfortable and convenient service at people s time of need. Team members from both organ and bone marrow transplant programs gathered to organize, make and serve a delicious meal for the staff and current residents of the three village homes (the Casa de Carlitos, Nano Nagle Inn and the Ronald McDonald House). There was such a generous abundance of food we were able to freeze some of the food for future residents. It was a great evening that created even stronger bonds with the special people we serve. -7-

8 MEDICATION TRANSPLANT MEDICATION MINUTE One of the most important responsibilities you will have in the transplant process is taking your medications as prescribed. We recommend patients be engaged in their care and keep a medication card or list to use every day and bring it to each office visit to be reviewed by a care provider. Please be aware of the brand name and generic names of your medications, the purpose for each of them, what each medication looks like, which days/times and how long to take each medication, how to take the medication or special instructions (if OK to crush if needed or if need to take with food, etc.), the most common side effects, what to do if a dose is missed, if it is a prescription or overthe-counter medication, etc. This is a lot of information to keep track of so please let us help you; if you have any questions about your medications, do not hesitate to ask your friendly pharmacist or care provider. You should never stop taking a medication unless directed to do so by your physician. If you cannot afford your medications, let your social worker (Melanie, ) know and we will work on helping assist with coverage. Your medications play a huge role in your outcome! We will be featuring a different medication that is standard of care for patients before, during and/or after their transplant. This issue we will be featuring Acyclovir. ACYCLOVIR a.k.a. Zovirax is an antiviral medication used to treat or prevent infections such as shingles (herpes zoster), chickenpox and cold sores (herpes simplex). This medication can be given orally or by IV administration; it can be taken with or without food. Potential side effects include, but are not limited to the following: allergic reaction, skin reaction, confusion, insomnia and/or behavior changes, weakness, fatigue and/or decreased coordination, head and/or muscle aches, nausea/ vomiting/diarrhea, changes in vision, kidney and/or liver dysfunction. Typically our patients take 400mg of Acyclovir by mouth twice a day after transplant, but this may vary. -8-

9 STAFF SPOTLIGHT Nicole Nelson, BONE MARROW TRANSPLANT COORDINATOR Nicole Nelson, RN, is transplant coordinator for the Bone Marrow Transplant program at the Avera Transplant Institute. In this role she coordinates all aspects of care for bone marrow transplant patients. Before becoming transplant coordinator in July, Nicole worked as an RN in ICU at Avera McKennan for a year and a half, and on the Transplant and Oncology Unit for three and a half years. She holds a bachelor s degree in nursing from Augustana College in Sioux Falls. She is married and is the mother of a little boy, with another baby on the way. She enjoys spending time with her family at the lake, or doing other various activities. I enjoy my team of coworkers at the Avera Transplant Institute, and I enjoy the close contact with patients as transplant coordinator. Bone marrow transplant patients often have complex treatment plans, and I consider it a privilege to help them navigate through the health care system and make the process as seamless as possible, Nicole says. -9-

10 OTHER OFFERINGS AT THE PRAIRIE CENTER A Time to Heal for All Cancers Among survivorship programs is A Time to Heal, a 12-week holistic rehabilitation program designed to help men and women regain physical, emotional, intellectual, psychological and spiritual health after undergoing cancer treatment. People who have completed this program say they have greater satisfaction in life and stronger feelings of well-being. Call for details. Take Charge of Your Nutrition Learn to maximize your nutrition and discover ways to manage side effects of treatments. The Avera Cancer Institute has a dietitian available to assist with your nutrition concerns. Call to set up an appointment. Look Good... Feel Better This program is offered to women who deal with the outward side effects of chemotherapy and radiation on hair and skin. It occurs the second Tuesday of the month from 1 3 p.m. and the fourth Wednesday of the month from 4 6 p.m. Call to register. Spiritual Care Spiritual Care Services can help an individual sort through complex emotional and spiritual issues. Call Mary Guth, chaplain at Aromatherapy Samples are available in patient care areas. Please inquire with staff. Medical Acupuncture Acupuncture is available on Mondays and Fridays. Acupuncture helps reduce stress and the discomfort of cancer treatment side effects. Call for appointment times and fees. Therapeutic Massage minute massages are offered on Wednesdays and Thursdays. Free 15-minute massages are offered on Tuesdays. Call for appointment times and fees. Classes in the Mind and Body Studio These classes use the mind-body approach, focusing on mindfulness, gentle movement, posture, breath and visualization, and are facilitated for all fitness levels. If interested, call for a list of class offerings and times. -10-

11 FOUNDATION SUPPORT AVERA MCKENNAN FOUNDATION BONE MARROW TRANSPLANT FUND The Bone Marrow Transplant Fund through the Avera McKennan Foundation supports programs and services for those receiving transplants and their families. A contribution enhances support for transplant patients by providing educational materials and integrative medicine to promote wellness to the mind, body and spirit. Gifts to Avera McKennan help perform miracles every day. Your gifts: Advance and support health care delivery and patient care. Benefit patient programs and services. Assist with the cost of patient care services not covered by medical insurance. Provide Journey Totes a binder that serves as a guide and reference along the transplant journey. Provide Care and Comfort gift baskets a useful alternative for patients who cannot receive flowers due to infection risk, and are personalized for the patient s needs. The effects of your kindness are profound and far-reaching. To give to the Bone Marrow Transplant Fund, visit or call the Foundation office at Thank you. CHRISTOPHER AUVENSHINE, DO Transplant Surgeon VINOD PARAMESWARAN, MD Bone Marrow Transplant TARIQ KHAN, MD Transplant and Hepatobiliary Surgeon HESHAM ELGOUHARI, MD Hepatologist KELLY MCCAUL, MD Bone Marrow Transplant AHMED GALAL, MD Bone Marrow Transplant MUMTAZ NIAZI, MD Hepatologist ROBERT SANTELLA, MD Transplant Nephrologist -11-

12 CONTACTS at the Avera Transplant Institute Avera Transplant Institute Toll Free After Hours Transplant Institute Director Beth Plahn, RN, BA, MHA Bone Marrow Transplant Manager Lacey Roberts, RN, OCN Bone Marrow Transplant Coordinators Sarah Schuster, RN, OCN Bethannie Vermeer, RN, OCN Nicole Hanisch, RN Patti Swenson, RN Bone Marrow Transplant Social Worker Melanie Hericks Bone Marrow Transplant Financial Coordinator Linda Towns Spiritual Care Mary Guth, MS LMFT More Information For more information about the Avera Transplant Institute and to view Medical Minutes and interviews with patients and physicians, go to AveraTransplant.org. TRAN REVFE0613 Avera Transplant Institute Prairie Center 1000 E. 23rd St., Suite 210 Sioux Falls, SD RETURN SERVICE REQUESTED