Bone Marrow Transplant Patient Newsletter

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1 Bone Marrow Transplant Patient Newsletter Look no further ISSUE 2

Lewis Carroll, in Alice in Wonderland, writes: Who are you? said the caterpillar. I hardly know. Sir, just at the present?

2 FOCUS ON THE CAREGIVER: CHALLENGES FOR CAREGIVERS The challenges of a cancer diagnosis can be a major life stressor. The impact of a cancer diagnosis affects every dimension of life spiritual, social and emotional. It has a ripple effect on the people involved with the patient, especially the primary caregiver. Lewis Carroll, in Alice in Wonderland, writes: Who are you? said the caterpillar. I hardly know. Sir, just at the present? Alice replied rather shyly, At least I knew who I was when I got up this morning, but I think I must have been changed several times since then. When experiencing a bone marrow transplant it may feel very similar to what was described by Alice; very quickly life becomes full of transition and change. These transitions happen for the patient as well as the caregiver. The caregiver takes care of everything else while the patient focuses on getting well. The recovery period can be long. The caregiver and patient can have significant short- and long-term effects and even late effects. Caregivers often contain or hide their own feelings and focus on their role of supporting and meeting the needs of their loved one. The results can lead to feelings of isolation and the absence of support. The changes that occur after a BMT involve renegotiating roles, tasks and responsibilities. This life-changing experience has many levels and each day the caregiver s life perspective is challenged in a new way. In caring for themselves, caregivers can reevaluate their lifestyle and make positive changes to improve their overall well-being. It is important to find ways to reduce stress and gain confidence by discovering new interests. Find time to engage in positive experiences; for example, exercise or journaling. As caregivers first understand the barriers that keep them from seeking help, and begin to work on eliminating those obstacles, they can strive for self care. Caregivers need to focus too on finding ways to discover meaning and purpose in life. What are your short term goals or dreams? It is of upmost importance to establish a care team that can work together to encourage the patient through the healing process. The primary caregiver needs the help of others during this time; remember it takes the gifts of many individuals. As difficult as it may be, find ways to prioritize self care. The caregiver s and patient s lives depend on it. Mary T. Guth, LMFT Spiritual Care -2-

HAPPENINGS BMT CONNECTIONS: Avera s Bone Marrow Transplant Support Group, BMT Connections, welcomes anyone affected by bone marrow transplant.

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 E. 23rd St. on the Avera McKennan campus.

Medication side effects Provider session Fitness/yoga Dietary/cooking class Open discussion CANCER SURVIVORS DAY CELEBRATION Join us for a special day to recognize all the brave people who have been

Food, beverages and entertainment will be provided.

3 HAPPENINGS BMT CONNECTIONS: Avera s Bone Marrow Transplant Support Group, BMT Connections, welcomes anyone affected by bone marrow transplant. We especially encourage our patients and their loved ones before, during and after transplant to join in the activities and discussion, to not only receive support but to offer it 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 E. 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 CANCER SURVIVORS DAY CELEBRATION Join us for a special day to recognize all the brave people who have been told they have a cancer diagnosis. As you know, they are survivors from that day forward. The Avera staff will be hosting the Cancer Survivors Day Celebration event June 2 from noon to 1:30 p.m. at the Prairie Center; we hope you and your loved ones will be able to attend! Food, beverages and entertainment will be provided. QUEEN S CORNER We hope this insert will 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 : Maintaining Optimism Is a Lifelong Process: Positive thinking is not the destination; it is the journey. An optimistic person will be constantly challenged by external circumstances as well as inner fears and doubts. Always remember that these tests are like a ladder you must climb. As you move past each rung, your optimism strengthens and your confidence begins to flex newly found muscle that you might never have developed otherwise. Mantague Edwards -3-

TRANSPLANT MEDICATION MINUTE One of the most important responsibilities you will have in the transplant process is taking your medications as prescribed.

), the most common side effects, what to do if a dose is missed, if it is a prescription or over-the-counter medication, etc.

4 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 it s 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 over-the-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, (605) ) know and we will work on helping to assist with coverage. Your medications play a huge role in your outcome! In this newsletter, 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 Steroids. -4-

When used within the oncology and bone marrow transplant population, prednisone and dexamethasone are commonly used as a part of the chemotherapy regimen and/ or to prevent graft-versus-host disease

5 -5- Prednisone and dexamethasone belong to the general medication class of steroids, or more specifically corticosteroid. These medications are used for numerous medical conditions in the general population. When used within the oncology and bone marrow transplant population, prednisone and dexamethasone are commonly used as a part of the chemotherapy regimen and/ or to prevent graft-versus-host disease (GVHD). In GVHD, steroids suppress the immune cells of the newly transplanted bone marrow. This prevents the newly transplanted immune cells of the bone marrow from attacking the recipient s (person who received the bone marrow transplant) tissues and organs. Shortterm steroid use has potential side effects including upset stomach, jitteriness, agitation, increased blood pressure, insomnia, increased appetite and elevated blood glucose levels. Prednisone and dexamethasone should be taken with food to minimize stomach upset. They should also be taken as early in the day as possible, especially if the medication is causing insomnia. Long-term side effects are potentially more serious including osteoporosis, immunosuppression, weight gain and uncontrolled high blood glucose levels. It is recommended with long-term steroid use to closely monitor these potential side effects. For osteoporosis, your doctor may recommend medications to help prevent bone loss and decrease bone fractures. If you have diabetes, closely monitor your blood glucose levels and weight. For immunosuppression, try to prevent potential infections from occurring by washing your hands frequently, and staying away from large crowds, airplanes and actively sick children and adults. Lastly, it is not recommended to abruptly discontinue steroid use. You may commonly be prescribed a tapering dosing regimen to prevent the side effects associated with abrupt discontinuation.

6 CUSP PROJECT SUCCESSFUL IN ELIMINATING CENTRAL-LINE INFECTIONS A project known as CUSP, Comprehensive Unit-Based Safety Program, has been extremely successful in reducing centralline associated bloodstream infections (CLABSI) at Avera McKennan, in two key units ICU and 3East Transplant/ Oncology Unit and hospital wide. CUSP is an initiative of the Agency for Healthcare Research and Quality through Johns Hopkins Hospital. In South Dakota, CUSP is a collaboration between the South Dakota Association of Healthcare Organizations and Johns Hopkins. At Avera McKennan, ICU and the Transplant/Oncology Unit on 3East use the most central venous catheters, and also care for the most acutely ill patients. These units put several initiatives in place, for example, weekly dressing changes, regular RN assessment of central line sites, scrubbing the hub, and patient education and empowerment, to name a few. Our patients are unique, in that we work with the most immunocompromised patients that have difficult diseases and various permanent central lines in place, says Lola Twedt, RN, clinical nurse educator on 3East. 3East has implemented a two-person dressing change, and a rule that bone marrow transplant patients have no open air lines all lines must have a dressing. Secret auditors monitor scrubbing the hub and also hand-washing, Lola says. Patients are also asked to work in partnership with this effort by keeping staff accountable for care of their central lines. Since February 2011, the Avera McKennan ICU has had zero central line infections. On 3East, there have been none since February 2012, and several zero months before that date as well. The 3East Transplant/Oncology Unit has seen a 94 percent reduction in central-line bloodstream infections over the past 18 months. Lola Twedt RN, OCN and Bethannie Vermeer RN, OCN presented the CUSP success of the Transplant Oncology unit at the National Oncology Nursing Society Annual Meeting in April in Washington, D.C. Lola says, It s been exciting to be involved with making changes that have profoundly impacted patient outcomes. We re thrilled to share what we ve learned on a national level. In light of its success statewide, South Dakota s CUSP CLABSI program was recognized by the Johns Hopkins University Armstrong Institute for Patient Safety and Quality. Each year approximately 99,000 patients in the United States die due to hospitalacquired infections. The average cost to treat one CLABSI at Avera McKennan is estimated to be $64,000, in addition to much difficulty for patients and families. More important than cost savings is the benefit we re able to pass along to patients -6-

7 and their families, said Judy Blauwet, Senior Vice President of Hospital Operations and Chief Nursing Officer at Avera McKennan. We re driven by the philosophy that it s the right thing framework for implementing quality improvement initiatives. We re proud of the ownership our caregivers have taken in this project, and hope to expand it to other units of the hospital, Blauwet added. to do, and CUSP has given us a strong Name of card holder: My tunneled triple lumen IV catheter (Trifusion) was placed on at the following facility:. If you have questions or concerns please call Avera Hematology and Transplant at during business hours, 8am-5pm Monday-Friday. Please see reverse side for catheter tips. Trifusion Catheter Care Scrub catheter hub with alcohol prep for 15 seconds before accessing Flush each lumen daily & after each use with 3mls of 100 unit/ml Heparin Change dressing & caps weekly & when compromised Recommended dressing: Tegaderm CHG Recommended cap: Max Guard These are examples of cards available to keep in your wallet to help keep track of information regarding you line. They are in the Journey Binders each new BMT patient receives and upon request if needed. We hope you find them helpful and that nobody ever has to experience a line infection. PLEASE KEEP US INFORMED Please notify us at or if you have an address change so you can continue receiving correspondence from us. -7-

8 STAFF SPOTLIGHT Bethannie Vermeer BONE MARROW TRANSPLANT COORDINATOR Bethannie Vermeer, RN, is a Transplant Coordinator for the Bone Marrow Transplant program at the Avera Transplant Institute. She coordinates clinical aspects of patient care leading up to and continuing through the stem cell transplant process. Prior to working as a Transplant Coordinator, she worked for five years on the Transplant and Oncology Unit in direct patient care and as a resource nurse. An Oncology Certified Nurse since 2009, she has served as a staff mentor for oncology, chemotherapy and bone marrow transplant patient care. Bethannie is a member of the Bone Marrow Transplant Subcommittee and assists in developing and maintaining policies and standards of operating procedures relating to care of transplant and oncology patients and developing staff education tools. She actively participates in education of staff. She enjoys spending time with her extended family, and traveling. I love to get stamps in my passport, see new places and try new things. I love my job as a coordinator because of the people that I get to work with every day. It really is a privilege to walk with patients and their families during the transplant process it can be very difficult, but it is also a very hope-filled time of transition. I have learned so much from my patients about the important things in life, and I hope that I can pass those things on to others, and be an encourager to the people around me, Bethannie says. -8-

9 PROFESSOR LAUNCHES SUCCESSFUL BONE MARROW DONOR DRIVE AT SDSU When his wife, Tara, was diagnosed with a serious blood disorder that might require a transplant from a donor s stem cells, Steven Hietpas of Brookings came face to face with the tremendous need for stem cell donors. Not only did this cause him to think about it he decided to do something about it. Hietpas, professor of electrical engineering and head of the Electrical Engineering and Computer Science Department at South Dakota State University, brought the need for donors to the SDSU campus. He partnered with nursing professor, Dr. Lori Hendricks, who went to numerous freshmen seminar classes to encourage them to sign up as bone marrow donors and educate them on the donation process such as how blood stem cells originate in the bone marrow and can be extracted simply by pulling blood from an IV. Mass s were also sent to instructors, who forwarded them to students. When encouraging people to sign up as donors, Hietpas believes it s important to clear up any misconceptions. For example, signing up to be a donor initially does not require giving a bone marrow sample or even a blood sample. It s just a simple cheek swab, he said. Signing up to be a donor does not mean that you will be called upon to donate. Rather, your name is placed on the registry with millions of others, with the chance that you could be matched with someone who is need of this life-saving treatment. The SDSU drive, which garnered nearly 450 new donors so far, is not a one-year effort only. We wanted to make it sustainable, Hietpas said. So the plan is to each year put the challenge before SDSU freshmen to Be the Match. He s hoping to reach a goal of at least 1,000 new donors to the national registry. Many thanks to the critical care nurses who drove up from Sioux Falls and other volunteers who helped make the drive so successful, Hietpas said. After experiencing fatigue and persistent low-grade fever, Tara was diagnosed with myelodysplastic syndrome, a non-cancerous condition in which the bone marrow produces an inadequate number of healthy cells. Untreated, it can lead to acute myeloid leukemia. A bone marrow donor was identified, and a transplant was planned to treat her disease. In the meantime, her hematologist, Dr. Ahmed Galal with Avera Medical Group Hematology & Bone Marrow Transplant, placed Tara on the medication Vidaza. Currently, she is doing so well that her bone marrow transplant may be postponed. Dr. Galal is really excited about what s going on with her blood count numbers he s even used the words potential miracle, Hietpas said. Even if Tara doesn t end up needing a bone marrow transplant, Hietpas is still passionate about the need for more donors. There are currently about 10 million people on the National Marrow Donor Registry. Yet someone is diagnosed with a blood cancer approximately every four minutes, so the need is constant. The closer the match, the more likely a life-saving transplant will be successful, so the more donors on the registry, the better. I feel that with over 300 million people in the United States, 10 million is not that many, Hietpas said. To learn more about becoming a bone marrow donor, go to bethematch.org or -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 Therapeutic massages, minutes in length, 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. Baskets 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 AveraMcKennanFoundation.org or call the Foundation office at Thank you. CHRISTOPHER AUVENSHINE, DO Transplant Surgeon VINOD PARAMESWARAN, MD Bone Marrow Transplant JEFFREY STEERS, MD Transplant 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 Nelson, 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 REVAP2313 Avera Transplant Institute Prairie Center 1000 E. 23rd St., Suite 210 Sioux Falls, SD RETURN SERVICE REQUESTED

Bone Marrow Transplant Patient Newsletter

Bone Marrow Transplant Patient Newsletter Look no further. 2013 ISSUE 1 BONE MARROW TRANSPLANT BONE MARROW TRANSPLANT PATIENT MEETS A TRUE HERO Her unrelated donor Sherry s only choice was to wait for