YOUR HLA HAS BEEN TYPED
When the swabs are received by the lab, they are analysed to determine your Human Leukocyte Antigens (HLA) tissue characteristics. HLA tissue characteristics are much more complex than matching blood groups.
YOU’VE BEEN MATCHED IN A SEARCH FOR A PATIENT
In 70% of cases, a matching donor is not found within the patient’s family. A search is then carried out to find an unrelated match.
HLA are ‘markers’ that identify cells that belong to you. Your body uses this information to determine ‘friend or foe’ and generally the immune system will attack anything not marked as ‘friend’. Once your HLA is typed, you become live on the UK and International registries and can be searched for as a potential match for anyone around the world.
The national registry is searched first, but the search regularly goes global, checking all international registries to find the best possible matched donor. There is only a 4-5% chance that you are one of the lucky few who have a matching tissue type with someone in need of a blood stem cell donation.
YOU’RE NOW IN CONFIRMATORY TYPING
When you are matched to a patient, you will go through the Confirmatory Typing (CT) process. You will be contacted by our medical team and they will guide you through each step. You will be requested to have a blood test at your local GP or hospital and will be asked to complete a medical questionnaire and consent form.
YOU’VE BEEN SELECTED
After the CT process, the patient’s clinical team will select the best possible donor from their shortlist. If you are the best match for the patient, you will then go through to the ‘Work-Up’ stage in preparation for your donation. You will have a further medical assessment and consultation at a specialist collection centre (where you will later donate your blood stem cells).
There will most likely be a small number of other potential donors at this stage, who will also be going through the same process. During this time, you will be reserved for this patient while their clinical team decides on the best possible donor from their shortlist.
The patient’s clinical team will request that you donate in one of two ways. It is important that you are comfortable with both methods, as the patient’s medical situation determines which one is most suitable.
Peripheral blood stem cell (PBSC) collection
This method is used 90% of the time. You will receive injections of a stimulating factor called granulocyte-colony stimulating factor (G-CSF) for four days prior to your donation. This is simply to stimulate your blood stem cells in the bone marrow into the blood stream ready for collection. These injections are administered by a nurse at either your home or work. For the actual donation, a needle is placed into one arm and your blood is circulated through an apheresis machine, which acts as a filter to remove the blood stem cells. A second needle then returns the blood through your other arm. The whole process takes about approximately 4-6 hours and you can return to work within one or two days.
Bone marrow donation
This is a slightly longer process, involving a general anaesthetic and a two night stay in the hospital. A thin needle extracts bone marrow from the back of your hip bone (not the spine), from which blood stem cells are collected. It is said to feel like you have taken part in a tough rugby game and you can return to work within a week.
Throughout the process, the team at DKMS will be there to guide you and make sure you are well informed and answer any questions you have. The team will also follow up with you regularly after your donation and provide ongoing medical support and information.
For further insight into blood stem cell donation, read the stories from DKMS blood stem cell donors.
Frequently asked questions
HOW WILL I KNOW IF I'M A MATCH FOR SOMEONE?
If you are found to be a match for someone in need, we will be in touch as soon as possible, either by phone, text message, email, or letter. We will try to reach you by phone as the first point of contact. It is important that we have up to date contact information for you in case you are identified as a matching donor. You can inform us of any changes to your details using our our form.
WHEN WILL THE COLLECTION TAKE PLACE?
It is hard to say exactly when your donation will take place because it strongly depends on the patient’s condition. In most cases you would be asked to donate 1-3 months after the confirmatory blood test. We will always give you 3-4 weeks advance notice. If there are any important dates when you know you cannot donate, we will always try to accommodate your schedule if you let us know in advance.
WILL I BE COMPENSATED FOR THE TIME I TAKE OFF FROM WORK?
If you are not covered by your employer, DKMS has a financial assistance programme that deals with lost wage compensation. If you are found to be a match and qualify for assistance, your co-ordinator will provide more information on this.
WHERE WILL MY STEM CELLS BE COLLECTED?
Your stem cell collection will be scheduled at a hospital depending on where you live, and we will cover all of your travel expenses.
AM I ALLOWED TO GET TO KNOW THE PATIENT?
Yes, you are eventually permitted to meet the patient (with the patient’s consent), although you may need a little patience. The UK law states that there should be a two year window of anonymity from the date of the transplant, with contact being permitted only after this time and only with the patient’s full consent. Contact can be established before this time via the team at DKMS in the form of anonymised letters. We do our upmost to help facilitate this process and understand its value to both the patient and donor.
This may differ for stem cell collections for patients from abroad as each country has its own regulations.
WHO COVERS THE EXPENSES?
There will be no cost to you. When a donor is matched with a patient, DKMS will cover the costs (including any travel, meals, or accommodation expenses that may be necessary). DKMS will also cover the costs for a companion to travel with you to the hospital. A donor’s own health insurance will never be used.
Whilst it is extremely rare to require follow up care, if it is ever needed, the donor’s costs will also be covered by DKMS. Other than that we are not legally allowed to make any payments or rewards for the provision of tissues, including bone marrow or blood stem cells for transplantation.
CAN I CHOOSE THE METHOD OF MY DONATION?
There are two possible ways you may be asked to donate and the method of your donation is determined by what the doctors believe will be best for the patient. We ask our donors to be comfortable with both methods of donation. If you are not willing to donate through either method, you should notify your DKMS Co-ordinator, so they can let the patient’s doctor know that you are only comfortable proceeding with one method of donation. The final decision on the method of donation will always be made by you as donation is voluntary.
HOW HIGH IS THE PROBABILITY OF BECOMING A CANDIDATE FOR A BLOOD STEM CELL DONATION?
For every donor there is only a 4-5% chance that they will match a patient within the next ten years, so it is a bit like winning the lottery. You will only become part of this figure if your tissue type is very closely matched to a specific patient in need.
WILL I BE ASKED TO DONATE AGAIN?
Sometimes the patient relapses e.g. because the immune system does not accept the new donor stem cells. If this happens we might get in contact with you again to consider a second donation, or a donor lymphocyte infusion, which for the donor is similar to the PBSC procedure, but without the stem cell stimulation process.