Donor Handbook

GET IN TOUCH WITH US DKMS-BMST Foundation India 723, CMH Road, Indiranagar 1st Stage Bangalore, India - 560038 Tel: 080-68286500 dkms-bmst.org CONNECT WITH US DONOR DKMS.BMST.in dkms_bmst_in DKMS_BMST_in HANDBOOK TOGETHER AGAINST BLOOD CANCER ASK US A QUESTION: [email protected]

“Thank you for being an AT YOUR SIDE ON YOUR important part of our LIFE SAVING JOURNEY key mission of working towards providing all Dear Potential Donor, blood cancer patients with a potential donor. If you are reading this handbook, it is likely you have received the great news that a request has been made on behalf of a patient who needs some of your stem cells. With this handbook, We believe that no blood we want to guide you through the next steps and help you feel secure in your decision. Here cancer patient should die you can find answers to your questions and information on the processes and support offered because they could not to you by our team at DKMS BMST Foundation India. find a donor.” We thank you for making the important commitment to potentially saving someone's life. Our DKMS-BMST Foundation India commitment is to support you at every step on the way of your lifesaving journey. Cover photo: DEBOJYOTHI, blood stem cell donor Together we can save lives. Best wishes, Dr. Latha Jagannathan (Chief Functionary & Director) DKMS BMST FOUNDATION INDIA MATHEW PUTHETTU New Thippasandra Main Road, Donor Request Coordinator HAL 3rd Stage, M +91 733 788 7450 Bangalore – 560075 E [email protected] Karnataka, INDIA Website: dkms-bmst.org Email: [email protected] CONTACT: DR SANJANA DONTULA Head - Medical Affairs M +91 733 788 7442 E [email protected]

THERE ARE ONLY SURVIVORS BECAUSE THERE ARE LIFESAVERS

STEPS IN PBSC DONATION PROCESS CONFIRMING THAT YOU 1. GET INFORMED AND HEALTH Your health and safety are our top priority and ARE A MATCH AVAILABILITY CHECK we want you to be informed at every step of your journey as a stem cell donor. Any medical You've been identified as a match because you have Once you have been found to be a match, we will condition will be thoroughly reviewed by our the same tissue type of the patient who is desperately get in touch with you in order to know your medical team and if donating poses any in need of a stem cell transplant. When you registered present health status. It is important that we have additional risk to you, you will not be asked to with DKMS-BMST, you submitted a cheek swab sample up to date information about your health status to proceed as a donor.Depending on your health that was tested to determine your tissue type make sure you are fit and healthy to go ahead status, it is possible that you may be (HLA-Human Leukocyte antigen). Your tissue type with the donation. Additionally, we will also check temporarily deferred to donate, or need to be has now been found to be a match for this patient. your availability for the PBSC donation process in permanently removed from the registry. the next few weeks. This process is called Health Donating blood stem cells is a serious commitment to availability check (HAC). 3. KEEP US UPDATED AND BE READY the patient, who is in desperate need of the stem cells that will potentially save their life. This decision is a The first step will be a detailed information session Once you are eligible as a donor, completed personal one and it is completely voluntary. with the coordinator of our team. The coordinator your health history questionnaire and give will call you, ask a few questions with regard to your consent to proceed, you will have already This section of the booklet explains the health your health status and would explain the donation become an essential part of the patient's availability check, PBSC (Peripheral Blood Stem Cell) steps in details. All your questions and concerns search for a donor and may well be their only donation process and how we will support you with regard to Peripheral Blood Donation Process opportunity for a second chance at life. throughout your journey. will be addressed by the coordinator. It can take anywhere from one week to three Your committed decision is of prime importance. months to schedule the final phases of your Donation is entirely voluntary and this is an donation. The following section of the important decision for you. Once the patient has handbook will discuss the peripheral blood been prepared to receive your stem cells, stem cell donation process. withdrawing would pose a serious risk to their life. Talk to your family and friends, as they can help you think it through. Please ask us for a leaflet designed exclusively for your family and friends. If you would like to talk to somebody who has already donated their stem cells, we may be able to put you in touch with someone. 2. SUBMIT THE HEALTH HISTORY QUESTIONNAIRE AND CONSENT FORM The health history questionnaire provides us with information regarding any medical conditions that may prevent you from donating. Your consent enables us to move forward with the Peripheral Stem Cell Donation Process and conduct any medical assessments and blood tests if required.

\"When I registered I always had somewhere in my mind that what if I actually come as a match for someone, and as they say its all in the destiny, when I received the call I was thrilled and anxious at the same time I was feeling special too as I it is a rare occasion when someone becomes a genetic match or rather a genetic twin. All this while I was confident about donating my blood stem cells.” “Whenever you get a chance to do good for someone, just go for it”! JEETHESH, blood stem cell donor

I'VE BEEN SELECTED! . The CC physician and the nurse will keep The following section of the handbook will discuss what will be the procedure of Stem Cell Donation. monitoring you during the PBSC procedure PREPARING FOR YOUR DONATION AND 4. GCSF Administration and you will be observed until you are PBSC DONATION PROCESS physically stable and ready to go home. . Blood stem cells are produced and stored 1. PBSC INFO SESSION . We will follow up with you regularly to check on inside the bone. G-CSF is Granulocyte colony . Once it is determined that you are the best stimulating factor (proteins) which are naturally your recovery after donation. produced in our body. match, the DKMS-BMST coordinator will contact 6. DONOR FOLLOW UP you again to prepare a time schedule and . GCSF stimulates production of blood stem cells explain the Peripheral Stem Cell Collection in . Donor's care is our priority and we will contact more detail. and mobilize them into our blood stream as and when needed. you on a regular basis after your donation to . You will receive information regarding date, ask about your physical condition. It is . Administration of G-CSF helps increase the important to contact us directly if you have any time, and venue of donation. concerns or wish to discuss any symptoms you number of stem cells and mobilize them into experience. . All the expenses incurred including transport our blood stream. The stem cells in the blood stream are then collected through Peripheral . You should expect a phone call on the day and medical assessment will be borne by Blood Stem Cell Donation. DKMS BMST. following your donation and then weekly until . You will receive daily G-CSF injections for five you report a full recovery. As part of your long . Once you have agreed, we will begin scheduling -term aftercare, we will be in contact with you consecutive days before your donation. On the on occasion for the next ten years. your medical assessment and peripheral blood first four days, a nurse visits your house and stem cell collection. administers the GCSF injection and on the fifth DID YOU KNOW day, the injection will be given to you at the 2. MEDICAL ASSESSMENT hospital or blood bank prior to your donation. There are currently thousands of Leukamia and Thalassemia patients in India waiting for a stem cell . The medical assessment takes place at an . The injection will be administered through a donation and many thousands more worldwide. Please support us to find a donor for every patient empaneled hospital or a blood bank where the tiny needle under the skin as prescribed by who is in need, stem cells are collected. the CC physician. . The purpose of the medical examination is to . Rarely, you may encounter some temporary assess your suitability as a stem cell donor. discomforts during the time of G-CSF. The Following steps involved are: discomforts are similar to cold/flu-like symptoms, such as: headache, bone pain and muscle aches. . You will meet the blood bank physician or the These discomforts disappear shortly after donation. Donors will be prescribed paracetamol Collection Center physician where you donate the /Ibuprofen for pain relief by the CC physician. stem cells. The physician once again explains the PBSC procedure in detail, reviews your health . Donors should refrain from any strenuous history questionnaire, answers your queries, and does a basic physical exam (health check) activities like lifting heavy weights, contact sports, and gym during GCSF administration . You will go through detailed lab tests such as and for 2 weeks post donation. complete blood count, liver function, renal 5. PERIPHERAL BLOOD STEM CELL function, thyroid function, etc. to check if you DONATION PROCESS – STEM CELL are healthy and free of any infections to donate COLLECTION stem cells. . PBSC is generally scheduled on a weekday, but . You will also undergo diagnostic studies such as we will check availability. chest x-ray, ultrasound abdomen and ECG at this stage. . It is an outpatient procedure which lasts about 3 3. DONOR FINAL CLEARANCE to 4 hours. It requires no overnight stay in the hospital and donors will be completely awake . In this step, the CC physician reviews your during the procedure. complete lab and diagnostic reports and clears Blood is drawn through a tiny sterile needle in you to donate stem cells, confirming that you one arm and passed through apheresis machine. are medically fit for the Peripheral Blood Stem A sterile, single-use disposable kit is used for Cell donation. PBSC. The apheresis machine separates the stem cells from the blood, collects it in a bag and rest . Occasionally, you may need some additional of the blood is routed back to the body through the other arm. testing to be cleared, based on the opinion of CC physician. . You may not be cleared too if it is deemed that you are not fit enough to donate stem cells.

“ I Became Someone’s Perfect Genetic Match on Honestly, I never expected to actually Valentine’s Day! ” receive a call because the odds of finding a match is so rare. DEEPIKA, blood stem cell donor Over one year after registering with DKMS-BMST, they contacted me by phone and informed me I had been identified as a possible match for someone. I couldn't believe it! It was emotional to think that I was a potential match and that I had the opportunity to save someone's life. The minute I found out I was a match, I immediately felt a connection to this stranger I didn't even know. I was the best possible match for the patient and the procedure was scheduled to happen on Valentine's Day.

PROCEDURE OF AT A GLANCE STEM CELL DONATION STEM CELL COLLECTION This section will help you to understand the donation process. You can learn about the steps GET INFORMED AND HEALTH AVAILABILITY CHECK involved before, during and after the collecction and Info session with coordinator how we will support you along the way. SUBMIT THE HEALTH HISTORY QUESTIONNAIRE AND CONSENT FORM Complete health history questionnaire KEEP US UPDATED AND BE READY Waiting period – 1 to 3 months. PBSC INFO SESSION Discussion of PBSC process and scheduling MEDICAL ASSESSMENT Health check by collection center physician, blood test and diagnostic study GCSF ADMINISTRATION Administration of GCSF by a professional nurse PERIPHERAL BLOOD STEM CELL DONATION Collection of stem cells, Out patient procedure, 3-4 hours DONOR FOLLOW UP Post donation follow up at regular intervals

THE THINGS YOU MAY WANT TO KNOW FREQUENTLY ASKED 1. WHERE WILL MY STEM CELLS BE 5. WILL I BE COMPENSATED FOR THE QUESTIONS COLLECTED? TIME I TAKE OFF FROM WORK? THE THINGS YOU MAY WANT TO KNOW Your stem cell collection will be scheduled at a If you are not covered by your employer, hospital or a blood bank in Bangalore or another DKMS-BMST has a financial assistance programme Here you will find all the questions we regularly major city in India depending on where you live. that deals with lost wage compensation. get asked at DKMS-BMST. If you can't find the We will cover all of your travel expenses. answer to your question here, or elsewhere in this 6. WHEN WILL MY DONATION TAKE booklet, please feel free to call our donor support 2. WHO COVERS THE EXPENSES? PLACE? team members – (office landline number/or write to us – [email protected]) There will be no cost to you. When a donor is It is hard to say exactly when your donation will matched with a patient, we will cover the costs take place, since it depends strongly on the (including any travel, meals, or accommodation patient's condition. In most cases, you would be expenses that may be necessary). DKMS-BMST asked to donate anywhere between 1-3 months will also cover the costs for a companion to travel once we receive your duly-filled health history with you to the hospital or blood bank. Your questionnaire. We will always give you 3-4 weeks personal health insurance will never be used. Whilst advance notice. If there are any important dates it is extremely rare to require follow up care, if it when you cannot donate, we will always try to is ever needed, the donor's costs would also be accommodate to your schedule. covered by DKMS-BMST. Other than that, we are not legally permitted to make any payments or 7. WILL I BE ASKED TO DONATE AGAIN? rewards for the provision of tissues, including blood stem cells for transplantation. There is a possibility you will be asked to donate again for the same patient. If a patient's immune 3. WILL I PERMANENTLY LOSE MY system does not accept the transplant, the patient STEM CELLS? might relapse, meaning second stem cell transplantation could be necessary. In very rare For the PBSC procedure, the amount of stem cells cases, you might be a matching donor for another collected is only a fraction of the body's total stem patient in need. In both cases, your donation is cells. The amount donated does not weaken your always completely voluntary. own immune system. Your stem cells will be naturally replenished within a few weeks. 8. WILL I BE ABLE TO MEET THE PATIENT, I HAVE DONATED MY STEM 4. WILL MY EXISTING MEDICAL CELLS FOR? CONDITION PREVENT ME FROM DONATING? We are often asked by donors if they can find out more about the person they donated their stem We take the health and safety of our donors very cells to, or even meet them. Depending on the seriously. All donors are required to complete a country where the transplantation takes place, health history questionnaire before proceeding. different rules apply. As per confidentiality and Any medical concerns are reviewed by a doctor to legal policy, the patient's age group, gender, and fully assess your ability to continue as a donor. location of treatment will be shared with the Depending on your health status, it is possible that donor post donation. Depending on which you may be deemed temporarily unavailable to country the patient was transplanted in, it might donate, or need to be permanently removed from also be possible to write to the patient the registry. anonymously following donation. In some countries, after a certain period of anonymity, the patient and donor are able to exchange personal information and contact each other directly.

9. UPDATES ABOUT THE PATIENT TOGETHER WE REALLY CAN The patient's doctor may provide updates within SAVE LIVES ! the first year after the donation. We will contact you once an update is available. It is important to note that, due of confidentiality, some transplant centers are unable to provide patient updates. You should be prepared for the possibility that you may not receive any updates on the patient's recovery. Your DKMS-BMST coordinator can provide further information on the policies that are in place regarding your specific patient. 10. COMMUNICATING WITH THE PATIENT IN THE FIRST YEAR AFTER TRANSPLANTATION Communication with the patient is managed by DKMS-BMST. Before the patient receives your stem cell donation, details of both parties will remain completely anonymous. After the patient has received your donated stem cells, you will be able to request some general details about the patient, e.g., their gender, age group and the country where the transplant took place. After the donation, some transplant centers may allow you to send anonymous letters to the patient. This communication should not include any identifying information such as your name, address, city, region or any other contact information. 11. COMMUNICATING WITH THEPATIENT: LONGER-TERM After a certain period of anonymity, some transplant centers may allow direct contact with the patient. Contact may only occur if both you and the patient give consent to exchange your contact information. Some centers do not allow any communication, so you should be prepared for the possibility that you might never be able to learn the patient's identity or have any contact with them. Your DKMS-BMST coordinator can provide further information on the specific policies that are in place at the hospital where your specific patient is being treated. DID YOU KNOW You don’t actually lose your stem cells when you donate them to a blood cancer patient in need - you only donate some of them. Your stem cells are very clever and completely replenish themselves.