DONOR HANDBOOK TOGETHER AGAINST BLOOD CANCER

Transcription

1 DONOR HANDBOOK TOGETHER AGAINST BLOOD CANCER

2 AT YOUR SIDE ON YOUR LIFE SAVING JOURNEY WHY WE NEED BONE MARROW DONORS Blood cancer is the third leading cause of cancer deaths & kills more children than any other disease in the U.S. A bone marrow transplant can be a life-saving treatment for blood cancers like leukemia and approximately 70 other diseases, including aplastic anemia and sickle cell disease. Dear Friend, When you registered as a bone marrow donor, you provided so many patients with hope. Now you have the potential to provide one with a second chance at life. DKMS started with my family s search to find a bone marrow donor for my mother. It was 1990 and there were only 3,000 registered donors in our native Germany. With the odds of finding a match starting at one in 20,000, the situation seemed hopeless. But my father was determined to make the impossible possible. Together with family, friends and volunteers, he registered 68,000 potential donors in just one year. Sadly, however, my mother lost her hard-fought battle when I was only fourteen. My mother s death motivated me to do everything I could to prevent other families from suffering the loss that we did. In 2004, I joined my father to start DKMS in the U.S. As you know, we register new potential donors to save more lives. As you re about to find out, we also provide those who become donors with the best possible support and care. In the coming weeks, you ll get to know many of us by name as we guide you through your life-saving journey. We will do all we can to make it a positive and powerful experience that leaves you feeling like the lifesaver you truly are. With gratitude and appreciation, KATHARINA HARF, Co-Founder

3 HEIKE, potential donor THERE ARE ONLY SURVIVORS BECAUSE THERE ARE LIFESAVERS 4 YOU ARE A MATCH 6 THE TWO WAYS TO DONATE 12 WHAT DID YOU DO WHILE DONATING? 14 PREPARING FOR DONATION 16 AFTER DONATION 17 WHY A PATIENT NEEDS YOU 18 FREQUENTLY ASKED QUESTIONS 22 THE DONATION JOURNEY 23 THINK IT OVER, TALK IT OVER SE HABLA ESPAÑOL dkms.org/donors

4 YOU ARE A MATCH Less than 1% of all registered donors ever become a match. You are now part of that rare group. type. HLA are protein markers on your cells that aid your immune system to identify cells that do or don t belong in your body. Once we determined your HLA type, we listed it anonymously on the national registry. We contacted you because a doctor has found that your HLA closely matches that of a patient who needs a bone marrow transplant. A close match means a better transplant outcome for the patient. That s why we are reaching out to you now. A doctor treating a patient in need of a stem cell or bone marrow transplant has determined that you may be a good match for the patient and would like to request further testing to see if you are medically fit to donate. This may be exciting news for you. It might make you a bit nervous, too. That s OK. DKMS is here to support you in every way as you consider the opportunity to donate. This booklet provides you with detailed information on next steps, as well as the two methods of donation: 1. Peripheral blood stem cell (PBSC) collection 2. Bone marrow donation HOW YOU WERE SELECTED It all started the day you registered and swabbed your cheeks. The cells you collected were sent to a lab to determine your HLA (human leukocyte antigen) NEXT STEPS Contact us One of our coordinators is ready to take you through the next steps and answer any questions you may have. That person will be a great sounding board as you consider moving forward with donation, and an expert at guiding you through the process. You ll find the contact information for your coordinator on the letter and forms that came with this booklet. Complete and submit the enclosed health history questionnaire and consent form. This will help us determine if donation is safe for you and give us permission to conduct further testing. Please be as detailed as possible. Your health is our priority! Talk to friends and family. Donating is a serious commitment. It s important to reach out to the people you trust the most to talk through your I can t think of another way that you could so greatly impact someone else s life. BENNETT MARANO, donor decision to donate and what it means for are the best match for the patient, and you physically and emotionally. Moving screened for infectious diseases. We ll forward is entirely up to you. We do ask schedule the appointment at a lab near that you be 100% committed to donation you. There is no cost to you and all prior to providing a blood sample. results are strictly confidential. If you are (See page 27.) confirmed as a match, you ll likely be asked to donate. If you are not, you will Provide a blood sample. stay on the registry and be available to This will be analyzed to confirm that you other searching patients. 4 YOU ARE A MATCH YOU ARE A MATCH 5

5 PERIPHERAL BLOOD STEM CELL (PBSC) COLLECTION THE TWO WAYS TO DONATE This section will help you to understand the donation process. It s important to read about the two methods used to collect stem cells as you will be asked to donate in one of these two ways. Learn about the steps involved before, during and after each method of collection and how we will support you along the way. PBSC collection is a procedure similar to donating platelets. Your blood is drawn from one arm into an apheresis machine that separates out the blood stem cells before returning the rest of your blood back to your body through the other arm. PBSC collection is the donation method of choice 75% of the time. SCHEDULING PBSC collection is performed on a weekday (generally Monday-Thursday) at one of our accredited partner hospitals. The procedure generally lasts one day (6-8 hours), but can sometimes be done over two days (3-4 hours each day). Donors generally do not stay overnight in the hospital. THE PROCESS METHOD 1: BEFORE PERIPHERAL BLOOD STEM CELL Starting four days before your COLLECTION procedure, you ll receive once-daily injections of filgrastim, a synthetic protein, to stimulate the release of stem cells from your marrow into your bloodstream. The first injection happens in a clinical setting convenient to your home, office or school. The second through fourth injections are administered by a nurse in your home or office, and the fifth is given in the hospital the morning of donation. THE TWO WAYS TO DONATE 7

6 BONE MARROW DONATION DURING You ll be seated in a reclining chair or adjustable bed. A sterile needle will be placed into a vein in each of your arms. Blood is drawn through one vein, passed through the apheresis machine, and then returned to you through your other arm. The machine collects stem cells, platelets, and some white blood cells. All of the tubing used with the machine is sterile and used only once for your donation. AFTER You ll be observed for a short time until you are physically stable and ready to go home. We will follow up with you two days after your donation and regularly thereafter, to assure you are recovering well. COMMON SIDE EFFECTS Nearly every donor experiences some side effects, but most do not experience all of them. FILGRASTIM Headaches Bone or muscle aches Nausea Fatigue PBSC Bruising at needle sites Numbness or tingling Chills Lightheadedness Nausea Decrease in platelet count RECOVERY The side effects of filgrastim generally disappear within 48 hours of donating. Most donors return to work, school and most other activities within two days of donating. Allow more recovery time if your regular activities include physical labor or contact sports. Alert family, friends and coworkers that you might need to alter routines for a bit, i.e. shorter workdays or less intense activities. Your stem cells will completely replenish themselves within three to six weeks. It s kind of like a lost art if you see someone who needs help you help them you give up your seat on the train or bus, you know. For me there was no question. Why not help a fellow human being. DINORA RIVERA, bone marrow donor Bone marrow donation is an outpatient surgical procedure performed under anesthesia. Doctors use special syringes to remove liquid marrow, which contains blood stem cells, from inside of your pelvic bone. This method is used less often, for specific diagnoses including pediatric cancers and certain forms of anemia. SCHEDULING Bone marrow donation is performed on a weekday (generally Monday Thursday) at one of our accredited partner hospitals. The procedure lasts about one to two hours. Most donors are discharged the same day. THE PROCESS BEFORE Once you arrive at the hospital, METHOD 2: you ll check in with your doctors to BONE MARROW COLLECTION review the procedure and discuss any questions you may have. An anesthesiologist will administer an anesthetic medication through an IV tube into a vein in your arm or hand. Once you are asleep, a breathing tube will be used to aid respiration. DURING The doctor makes tiny incisions (typically just two) in the skin over the back of your pelvic bone (not in the hip or spine). A syringe is inserted through these incisions to collect liquid marrow from inside the bone. 8 THE TWO WAYS TO DONATE THE TWO WAYS TO DONATE 9

7 It s probably the biggest change or influence you ll have on someone else s life. SANDRA OLIVEIRA, patient AFTER RECOVERY A bandage is placed over the inci- It s normal to experience some pain, sions (stitches are not necessary). bruising and stiffness during the first Y ou will be moved to a recovery room two to three weeks after donation. where you will be observed until you are fully alert and physically stable. M ost donors return to work, school and any other non-strenuous activities within a few days. COMMON SIDE EFFECTS You should avoid physical labor, heavy Nearly every donor experiences some lifting, bending and strenuous exerci- side effects, but most do not experience se for about twoweeks after donation. all of them. Alert family, friends and coworkers that you might need to alter DONATION routines for a bit, i.e. reduced Lower back pain travel, lighter duty tasks or more Fatigue assistance caring for children. Mild stiffness when walking Bleeding from incisions Y our bone marrow will completely replenish itself within three to six weeks. ANESTHESIA 10 Sore throat (from the breathing tube) Mild nausea and/or vomiting Decrease in blood pressure Grogginess THE TWO WAYS TO DONATE

8 ORDINARY ACTIONS. EXTRAORDINARY OUTCOMES. WHAT DID YOU DO WHILE DONATING? Relaxing, watching TV, chatting these are just a few of the ordinary things you can do during the PBSC donation process. But you re also doing something extraordinary giving someone a second chance at life. Here s how recent donors passed the time. I took a selfie! Watched movies, talked to my wife and the nurses. It was a fantastic experience that changed my life. I listened to music and watched TV. Most selfless thing I ve ever done. It s a no brainer to be a donor! I watched funny movies and laughed with the nurses. I d do it over and over again. Get swabbed people! Listened to music and chatted with my wife. Staff was great and made sure I was very comfortable. Watched sports talk on TV and read. Had a nice lunch. Chatted with my wife and nurses. I sat with my husband watching game shows and cartoons. It took about 5 hours, easy as pie. Watching TV mostly. I had my godmother for company, and the staff was fun, which made the donation process a breeze. 6 hours later, and it was done. I was cracking jokes with the wonderful nurses for the first 4 hours. I hope I have the opportunity to donate again. Thank you for that life-altering experience, DKMS! Donated twice to the same person. Chilled out, watched TV, chatted with the awesome nurses. I had to go two days in a row and watched movies or chatted with family most of the time. Would happily do it again. WHAT DID YOU DO WHILE DONATING? 13

9 PREPARING FOR DONATION Once you ve been confirmed as the best available match for the patient, you ll take the next steps toward donating. In most cases, you will donate one to three months after confirmation, depending on the health of the patient. It s amazing INFORMATION SESSION A vein assessment for PBSC donors to it s a new family One of our coordinators will contact you to schedule an hour-long telephone confirm that your blood can safely be drawn through your arms. In less than member for me. information session. During this call, 10% of cases, a central you will: line may be needed. NATASHA BOUKNIGHT, donor Find out whether you will be For marrow donors only, a unit of donating peripheral blood blood may be collected to have stem cells or bone marrow. available for transfusion after the patient s transplant will be made, on the donation method and the nature Learn details about the the procedure, if needed. This including a preparatory regimen for the of your work you may need to take donation process and have the is called an autologous unit and patient. It s important to note that once additional time before returning to any opportunity to ask questions. it is reserved just for you. a patient begins the chemotherapy and physically strenuous activities. We can Review and sign the consent form for donation. AFTER THE EXAM radiation they need to prepare their body for transplant, they must get the provide documentation to your employer or school to verify the medical nature of Begin scheduling a physical exam We ll review your results and notify you transplant or the consequences are life- your absence(s). and the donation procedure. of any unexpected outcomes. If the threatening. Start planning travel arrangements findings show a risk to you or the patient, Many donors will have to travel to for you and a companion of you will not be able to donate. It s important to note that once a patient one of our partner hospitals for the your choice for the donation. PHYSICAL EXAM SCHEDULING The exam is held on a weekday, two to begins the chemotherapy and radiation they need to prepare their body for transplant, they must get the transplant physical exam and donation. We arrange and pay for all transportation and accommodations for you and, on the day This is a comprehensive exam to three weeks prior to donation, and is or the consequences are life-threatening. of donation, also for a friend or family make sure donation is safe for you. The physical exam includes: typically conducted at the hospital where you will donate. It takes approximately TIMING AND TRAVEL member. We also cover childcare costs on the day(s) of your donation. Lab work: urinalysis, blood three to four hours, but you should plan The time commitment for donation is tests, and pregnancy test for women. If you are pregnant, you will not be allowed to donate. to commit a full day. Once you are medically cleared for donation, the transplant center will be notified and final preparations for generally hours over a three to six week period. In rare instances it can extend longer. You will likely need to miss a few days of work or school for your donation as well as recovery. Depending IT S IMPORTANT TO NOTE Once a patient begins the chemotherapy and radiation they need to prepare their body for transplant, they must get the transplant or the consequences are life-threatening. 14 PREPARING FOR DONATION PREPARING FOR DONATION 15

10 AFTER DONATION WHY A PATIENT NEEDS YOU THE PATIENT GETS THEIR TRANSPLANT allow direct contact between donors and patients. This is arranged only if The cells you donated will be infused both you and the patient consent to A bone marrow or stem cell transplant into the patient within one to two days it. Some centers may not allow any can save their life. of your donation. The cells move into the communication anonymous or direct patient s bone marrow and can begin which can be disappointing for you. A bone marrow or stem cell transplant growing and producing new cells. The Your coordinator will let you know is a potentially lifesaving treatment for patient will stay in the hospital between what to expect. patients fighting blood cancers like days until their blood counts approach normal levels and their immune SHARING WITH CARE leukemia and lymphoma, as well as other blood diseases like sickle cell anemia. In system rebuilds. We know donation can be a powerful many cases, patients have tried other PATIENT UPDATES You may be eager to hear about experience. You re doing one of the best things you could ever do by helping give someone a second chance at life. You treatments unsuccessfully and transplant is their last hope. Approximately 70% of patients must rely on the generosity of I just hope that people your patient s progress, but updates are subject to the policies of your patient s hospital (often referred to as a transplant center ). While some may want to share the news with friends and family, and may turn to social media to do so. For reasons of confidentiality and privacy, we ask that you do not share registered donors for transplants. HOW DOES A TRANSPLANT WORK? A transplant replaces the patient s know that when they swab their cheeks centers provide updates during the first year after transplant, some have the exact date or location of donation or the exact age and diagnosis of the unhealthy blood stem cells these are the cells that make the red and white blood and sign up for the confidentiality policies that don t allow for any. Your coordinator will let you patient. It s simply too easy for other parties to piece together clues and cells as well as platelets with healthy ones from a donor like you. registry how they are know what to expect. possibly generate unwanted publicity for both the patient and you. Prior to transplant, a patient receives going to change a ANONYMOUS COMMUNICATIONS Communicating with your patient is also high dosages of chemotherapy and possibly radiation therapy to completely family s life forever. subject to hospital policies. During the first year after donation, many centers Example of how to share destroy all the diseased cells in their body and immune system so it can t KATHLEEN HOGAN, mother of allow anonymous written communication I m donating bone marrow soon to reject the donor s cells. blood cancer survivor Owen facilitated through them and DKMS. All help a child beat blood cancer. correspondence with the patient must be free of any selfidentifying details such as name, address, city, state or other contact information. Example of how not to share (too specific): I m donating bone marrow this Soon after this, the donated cells are infused into the patient and move through the bloodstream to settle in the bone marrow, where they begin to grow DKMS.ORG/STORIES DIRECT CONTACT Wednesday in Washington, D.C. to a 10-year-old boy with Myelogenous and produce new healthy blood cells and platelets in a process called engraftment. Read more about the patients and donors we work with. After a year or more, some centers Leukemia. 16 AFTER DONATION WHY A PATIENT NEEDS YOU 17

11 FREQUENTLY ASKED QUESTIONS Here you will find all the questions we regularly get asked at DKMS. If you can t find the answer to your question here, or elsewhere in this booklet, please feel free to call our donor support team at WHAT IS DKMS? DKMS leads the fight to save lives by working with families, communities and organizations to recruit more bone marrow donors and provide more patients with life-saving transplants. It started with one family s search for a bone marrow donor and is today part of the world s largest bone marrow donor center with branches in the United States, Germany, the United Kingdom, Poland and Spain. Every person we register as a potential bone marrow donor is listed on the national Be The Match Registry operated by the National Marrow Donor Program (NMDP). DKMS donors make up 35% of this registry. During the course of the donation process, DKMS donors will encounter paperwork from Be The Match and the NMDP, however the entire procedure will be coordinated with care by DKMS. DONATION Can I choose the donation method? The donation method is selected by the patient s doctor based on which procedure they believe is best for the patient. That is why we ask that you be comfortable with the prospect of both PBSC collection and bone marrow donation. If you are not willing to donate through one of these methods, please notify your coordinator immediately. Does bone marrow donation involve my spine? No. The marrow is extracted from the back of your pelvic bone using a special syringe. Will I permanently lose my stem cells? For either donation procedure, the amount of stem cells collected is only a fraction of your body s total. Your donation does not weaken your immune system and the cells will naturally replenish themselves within a few weeks. Will my existing medical condition prevent me from donating? We take the health and safety of our donors very seriously. All donors are required to complete a health history questionnaire before proceeding. Any medical concerns you raise are reviewed by our medical staff to fully assess your ability to continue as a donor. If you are concerned about your ability to donate, please contact your coordinator and they will carefully assess your eligibility. Depending on your health status, it is possible that you may be temporarily unavailable to donate or need to be permanently removed from the registry. LOGISTICS When will I donate? In most cases you will be asked to donate one to three months after the confirmatory blood test. We will always try to give you three to four weeks notice. If there are any important dates that you cannot donate, we will make every effort to accommodate your schedule. Where will I donate? We work with a number of hospitals across the country. Although we try to schedule our donors at the hospital closest to their home, oftentimes donors must travel by car, train or airplane. FREQUENTLY ASKED QUESTIONS 19

12 DKMS will arrange and pay for your transportation and accommodations. In most cases, you will donate at the same facility where you will have your physical exam. Will my donation date change? Donation depends on both your health and that of the patient. Delays are common in the time it takes for you to go through testing and the physical exam the patient s health can take a turn, either postponing or even canceling donation. This can be very disappointing, but please know that the patient is grateful that you were willing to help them. Who covers the expenses? The patient s insurance and DKMS cover all medical, travel, lodging and meal expenses related to donation. DKMS will also cover the costs for a companion to travel with you for the donation procedure. There is no cost to you and your insurance will never be used. Donation-related, out of pocket expenses will be reimbursed. Will I be compensated for the time I take off from work? If your employer does not provide paid time off for donation, DKMS has a financial assistance program for lost wage compensation. If you qualify for assistance, your coordinator will give you more information about applying for aid. MATCHING What makes a good match? Doctors generally look at ten specific HLA markers to determine a match. The closer the match the better the chances that the patient s immune system will recognize donated cells as its own and allow them to grow and make new healthy blood cells. We generally don t find out exact patient-donor HLA match ratios. Am I the only match? It is possible for a patient to find multiple potential matches, however that information is known only to the patient s doctor and not us. The doctor will select the best donor based on how close the HLA match is, and will also consider the donor s age, sex, size, health history, and availability along with other factors. If you are contacted as a potential match, but not selected for donation, we will inform you. You will remain on the registry to be available for other searching patients. Do ancestry and ethnicity affect matching? Heritage is a very important factor. Like hair and eye color, your HLA type is inherited, so the best matches generally happen between patients and donors who share the same ancestry. There was a lot of communication between DKMS and myself. They answered all of my questions and soothed my fears. 20 FREQUENTLY ASKED QUESTIONS EMILY MCMONAGLE, donor

13 THE DONATION JOURNEY THINK IT OVER, TALK IT OVER From just matched to just donated there are many steps that come between being called as a potential match to resuming life after donation. DKMS will be by your side the entire way. Though you ll work with different people as you move through the process, you ll experience how we re all united in making sure you always get the best in personalized care and support. CONFIRMATORY TYPING (CT) You re a potential match! Medical questionnaire Blood test It s important to discuss your decision to donate with the family and friends closest to you. It s likely that they won t know much about bone marrow donation and may be surprised to learn you registered as a potential donor. This guide is a good starting point for explaining the basics what bone marrow donation is, the two ways to donate and how a bone marrow transplant from a healthy person like you can save a life. Your coordinator can also provide other print and digital resources. Your coordinator is always available to help you with your discussions. They re also willing to talk to a spouse, a parent, an HR professional, a college administrator, a coach or anyone concerned about you and how donation will impact your health, your school/work schedule and more. It s important for family and friends to know the personal side of your decision WORK UP (WU) your motivations and convictions so they can provide better support. Some What it could mean to someone is so, so big. And it s not just someone, it s their You are the best available match! good ways to do this include: whole family. Because you re helping Physical exam that person, but you re really helping Donation Explaining what inspired you the family. to register Discussing why you are I became like a their adopted son committed to donating almost. Yeah, I now have a new family. Sharing how amazing it is that you To this day this is the thing I am most so closely match a stranger proud of and it wasn t hard. FOLLOW UP (FU) Recovery Patient updates All these stages are handy to know, but you don t need to memorize them. Most of our donors call to tell us that they enjoyed working with Yentl and Becky and Nikki rather than CT and WU and FU! Opening up about your fears and hopes about donating JOHNATHAN JOSEPH, bone marrow donor 22 THE DONATION JOURNEY THINK IT OVER, TALK IT OVER 23

14 WHY WE NEED BONE MARROW DONORS WE MAKE A While 30% of patients can find a donor within their family, 70% must rely on perfect strangers to donate. Every year, more than 14,000 Americans need transplants using donated marrow. Less than half will get them. Diversity matters. Most patients find a donor in someone who shares their ancestry. LIFE BY WHAT WE GIVE. WINSTON CHURCHILL

15 CONTACT US! DKMS 100 Broadway, 6th Floor New York, NY T F info@dkms.org Find us online SE HABLA ESPAÑOL dkms.org/donors