Download match! - Bone Marrow Donor Programme

Now you are a
MATCH!
Now you are a
This booklet is to help you
understand the next steps on your
journey, should you continue through
to make this life-saving donation.
Most importantly, you are not alone
and will be supported by your Donor
Coordinator whose will keep you
fully informed and also introduce
you to other donors who can share
their experience first hand.
Before you are finally selected as
the best match for the patient, more
testing is required and the steps are
outlined.
1
STEP 2
Now, a doctor searching the BMDP
register has chosen you as a possible
matching donor for a patient. As you
know, the chance of finding a match
is around 1 in 20,000 so this is very
good news.
To confirm that you are
the best match for the
patient
Donor Workup
STEP 3
Thank you for signing up as a
volunteer bone marrow donor and
being part of the Bone Marrow
Donor Programme (BMDP) register.
You will remember the first step was
to provide us with a tissue sample
– either through a finger prick or a
buccal swab – and this was then
tested and your tissue type stored in
our database.
Donation
STEP 4
STEP 1
MATCH!
Confirmatory
Typing
Follow Up
To ascertain that you are
physically fit for donation
Bone marrow harvest or
Peripheral Blood Stem Cell
Harvest
Routine check-ups for
donors
Who needs a Bone Marrow Transplant?
Bone marrow transplants are used to treat patients whose bone marrow is not
producing the correct amount of various blood cells. More than 60 potentially
fatal diseases, including several types of leukaemia, are treated with unrelated
bone marrow transplants.
Why is a Match so important
The cells that manage the body’s immune system come from the bone marrow
and therefore a transplant essentially introduces a new immune system to a
person. If the donor and the patient do not share the same genetic markers, the
new white blood cells will attack the host body. These markers are called the
Human Leukocyte Antigens (HLA) and these are proteins found on most of the
body’s cells.
The HLA proteins are important in matching patients and donors for a blood stem
cell transplant.
• You have two sets of tissue type markers compared in the matching process.
One set is inherited from your mother, the other from your father.
• When a transplant centre looks at the match level, it is looking at how alike
the tissues of the patient and the donor are to each other. The BMDP requires
at least a 7 of 8 antigen match for marrow and peripheral blood stem cell
transplants.
• Most transplant centres look at eight HLA antigens, A, B, C and DRB1to select a
donor. While a 7 of 8 match between a patient and a donor may be suitable,
ideally we are looking for a full 8 of 8 match
8 OF 8 MATCH
Markers
Patient
7 OF 8 MATCH
Donor
Markers
A
B
C
C
DRB1
DRB1
Now you are a MATCH!
Donor
A
B
Results: Fully matched
Patient
Results: Possible match
2
STEPS OF
DONATION
1. CONFIRMATORY TYPING
You have been selected through an initial search of the database as a potential
match and contacted by your Donor Coordinator for an information session.
This is an opportunity for you to ask any questions and if appropriate get other
members of your family involved so that they can fully understand and support
you.
During the briefing you will be asked to update us on your current health status. If
you give consent to move forward for more testing, you will then provide us with a
blood sample that will be used for the confirmatory typing.
Not all donors called for confirmatory typing go on to donate but it is important
that you are ready for more testing if confirmed as a match and you are willing to
donate if chosen.
It’s Your Decision
It is your decision to participate in confirmatory typing and you should know that
any costs will be covered by the Bone Marrow Donor Programme. Your Donor
Coordinator is available to answer any questions or concerns and this could be a
good opportunity to meet up with other donors so that once you are confirmed
as a match for the patient, you can make an informed decision to move onto the
next stage.
What Happens after Confirmatory Typing?
The donor centre staff will let you know the outcome of your confirmatory typing
and if you are not a match this time, you may be called for another patient in
the future. Please stay on the register and remain committed. Your confirmatory
typing results will be added to your tissue typing.
If you are a confirmed match, now is the time to decide whether or not you are
willing to go through to the next stage and ultimately, to make the donation. Your
Donor Coordinator and one of the panel of doctors are available to assist you
during this time.
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2. DONOR WORKUP
The workup process has two stages that will confirm you are willing, healthy and
ready to donate bone marrow or make a Peripheral Blood Stem Cell (PBSC)
donation.
Participate in an Information Session and Give Your Consent
We will introduce you to your doctor who will complete a donor health
questionnaire and also evaluate you and your family’s medical history. At this time
more information will be shared about the donation process and any potential
risks and side effects. You are invited to have a family member or friend attend this
session with you and you may also speak with and meet other donors who have
gone through with the donation to gather their perspective.
Once you agree to
proceed, you will be
asked to sign a number of
documents, including a
consent to receive G-CSF
injections (if relevant) and
an “intent to donate”
document. This confirms you
understand what will take
place during the donation
process and the risks
involved.
Physical Examination
You will be given a thorough physical examination to make sure you have no
pre-existing medical conditions that could pose any special risks to you or the
patient. At the same time, we will collect blood samples to be tested for infectious
diseases which is very important as some diseases can be transmitted to a patient
through donation and the results will help determine your eligibility.
Now you are a MATCH!
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3. MAKING THE DONATION
Once the workup process shows that donating would not pose any special risk to
you or the patient, you will proceed to making the actual bone marrow or PBSC
donation.
Marrow Donation
Marrow donation is a surgical procedure that
takes place in a hospital whilst under a general
anaesthetic. You check in the evening before the
donation and the following morning, doctors will
collect liquid marrow from the back of your pelvic
bones. The takes around one hour and usually you
will stay in overnight to allow the effects of the
anaesthetic to wear off and then go home the
following day.
Image Courtesy on Be The Match®
National Marrow Donor Program®
Side Effects and Recovery: Most donors will feel some soreness in the lower back
for a few days or longer but usually they will be back to work in a few days. You
should be back to your normal physical routine in a few weeks and your own
marrow is completely replaced within four to six weeks.
PBSC Donation
PBSC donation is similar to blood donation
except we only collect the blood stem
cells and this procedure is carried out as an
outpatient usually taking between 5-7 hours.
To increase the number of blood stem cells
in the bloodstream, you will receive daily
injections of a drug called G-CSF for three
days before the collection and a fourth injection on the day of your collection.
Your blood is then removed through a sterile needle in one arm and passed
through a machine that separates out the blood stem cells. The remaining blood
is returned to you through the other arm.
Side Effects and Recovery: You may experience headaches, or bone or muscle
aches for the few days before the collection. These are side effects of the G-CSF
injections that you received to increase the number of blood stem cells in the
bloodstream and usually these side effects disappear shortly after the collection.
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4. FOLLOW UP
After you donate bone marrow or PBSC, your Donor Coordinator will arrange for
follow-up appointments usually at intervals of 1 week, 1 month, 6 months and 1
year after the donation. This is to ensure your health has not been affected by the
procedure even though most donors are back to work in a few days and resume
their normal physical routine in a few weeks. Your marrow is completely replaced
within four to six weeks. The BMDP and your Donor Coordinator care about your
well-being and want to support you throughout your journey – after all, few
people are able to play such a part in saving the life of another individual.
Privacy
At the BMDP we take privacy very seriously for both our donors and the
patients that we are supporting. We do this in order to protect both parties from
unwelcome attention or contact and in Singapore, which is small geographically,
this is even more important.
Patient and Donor Communications
If you are identified as a match, the patient could be anywhere in the world. We
will provide you with some basic information such as their gender, age and the
diagnosis and following your donation, we will give you a quarterly update on
their progress.
During this time, you may send and even receive messages such as greetings
cards but no information is to be shared that can identify you and it will be sent
via the BMDP and a partner register if the patient is overseas.
After one year, if both patient and
donor are willing and in Singapore,
then the BMDP will facilitate a meeting
and after that, it will be up to the two
parties to continue the relationship
as they choose. We understand
that every individual is different and
while most parties want to meet, it is
absolutely acceptable not to and to
remain anonymous.
Now you are a MATCH!
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About the 2 methods of donating, do I get to choose which method I
prefer?
The best source of stem cell donation (Bone Marrow Harvest OR
Peripheral Blood Stem Cell Donation) would be determined by the
patient’s medical condition. Transplant doctors may indicate the
preferred source of stem cells based on the needs of the patient. Donors
can indicate their preferred method of donation and they will be advised
of the transplant doctors’ preference during the donor workup.
Are there likely to be any long term effects on my health after
making a donation?
All of our donors have returned to their normal routine after donating
their bone marrow and none have had any long term side effects. Bone
marrow is fully restored within 4-6 weeks and there is a possibility that you
may be a little more tired than usual during this period but this differs for
each donor and many of them report being back to normal within just a
few days.
Do I have to pay for any of the tests and other costs?
No, you will not. You will be reimbursed for all expenses relating to the
bone marrow donation including any travel expenses or unpaid leave
although most employers are very supportive and will allow additional
time to attend medical check ups.
Can I say “No”?
There are legitimate reasons for saying “no”, including illness, the risk
involved or even fear. While the BMDP respects the decision of the
matched donor, uncommitted donors give false hope to patients waiting
to have a transplant. Once a donor gives his or her consent on the “Intent
to Donate” form, the patient actually begins pre-transplant treatment so
when a donor decides to pull out at any stage after the endorsement,
the patient will most likely die without a transplant as his or her own
bone marrow has been wiped out in readiness for the new donor cells
to be introduced. The BMDP hopes that you will be committed to your
participation as a bone marrow donor and we will do everything to make
sure that you are fully informed and supported throughout the procedure.
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FAQS
I’ve heard that donating bone marrow is very painful. Is this true?
Donating bone marrow is not painful as you will be under General
Anaesthetic for the short time it takes to collect the cells. Most donors say
they feel some discomfort or stiffness the following day, but the procedure
has not been described as painful.
Bone Marrow - Found in the centre of all large bones. It is where primitive
blood stem cells (blood stem cells) are produced. Blood stem cells develop
into all the blood cell components like platelets, red and white cells in the
blood.
Bone Marrow Transplant (BMT) - The process of giving healthy marrow to a
patient whose marrow is damaged or diseased.
Collection Centre - A hospital associated with the BMDP that is qualified
to collect bone marrow and care for donors before and after the donation
procedure.
Confirmatory Typing - A stage of testing to make sure that a potential donor
is the best match for a patient.
G-CSF - If a donor chooses to donate their peripheral blood stem cells they
receive an injection of Granulocyte colony stimulating factor (G-SCF). This will
activate and increase their blood stem cell production and encourage the
cells to move from their bone marrow to their circulating blood where they will
be collected for transplant to a patient.
HLA - Human Leucocyte Antigen – This refers to the white blood cell
(leucocyte) blood group. Just as red blood cells have A, B and O group, white
blood cells have the HLA types and the success of a transplant depends
mainly on HLA matching. There are at least 6 important HLA groups for bone
marrow transplantation. Each of these groups in turn may have hundreds to
thousands of variations. Hence there is a need to have as many donors in the
BMDP Donor Register as possible to offer the best chance of finding a match.
Match - In a marrow or blood cell transplant, the match refers to how much
alike the donor’s and patient’s tissue types are.
Peripheral Blood Stem Cells (PBSC) - The blood stem cells that circulate in
the blood.
Register - The BMDP Donor Register is a confidential national database of
potential volunteer donors established and maintained by the Bone Marrow
Donor Programme.
Tissue-type - An individual’s tissue-type is defined by the characteristics of
six genes (A, B, C, DRB1, DQB1 and DPB1), collectively known as the human
leukocyte antigen group (HLA). Testing for HLA groups, known as “tissuetyping”, is usually performed on a small blood sample and involves analysing
the genes that code for the HLA proteins.
Workup - The process that a matched potential donor goes through to make
sure he / she is healthy and fit to donate marrow or blood stem cells. Workup
includes a detailed information session with donor centre staff, a physical
examination and collection of blood samples for testing and screening for
infectious disease markers.
Now you are a MATCH!
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GLOSSARY
Blood Stem Cells - Young cells that can grow into red blood cells, white
blood cells and platelets. Blood stem cells are produced in the bone marrow.
The sources of the blood stem cells used for transplant are: marrow and
peripheral blood stem cells (PBSC) and blood collected from the umbilical
cord.
NOTES
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Now you are a MATCH!