Introduction
We’ve been in touch because someone with blood cancer or a blood disorder urgently needs your help.
We search our register for someone with a matching tissue type who could donate lifesaving cells and on this occasion, we’ve found you.
As a registered Anthony Nolan donor you are eligible to continue to be tested and to donate until your 61st birthday.
On average, four people donate stem cells or bone marrow every day at specialist collection centres in NHS and private hospitals in Sheffield, Manchester, Oxford and London.
If you agree to be tested, we will send the results to the patient’s team at their hospital. They will choose the best match for their patient.
What happens next?
This news may have come as a surprise to you.
- Read this guide carefully. It will tell you all about stem cell transplant, and what it means for you and the person receiving your donation.
- Talk it over. Discuss the idea of donating with those close to you before agreeing to the next stage. You can change your mind at any time, but to avoid letting the patient down we want to make sure you’re well informed before you make a decision. If you decide you no longer want to donate that’s completely your choice but please let your coordinator know as soon as possible so we can tell the patient’s Transplant Centre.
- Give blood samples. If you are still keen to donate we’ll need some blood samples from you to make sure you’re a suitable match for the patient. Read on to find out what’s involved.
If you decide you no longer want to donate that’s completely your choice but please let your coordinator know as soon as possible so we can tell the patient’s Transplant Centre.
The preparation
The next step
To find out if you’re a match for the patient we need some blood samples from you to perform some further testing.
Taking a blood sample
We can arrange for a nurse to visit you to take the blood samples. They will bring the blood sample test kit with them and will send it back to us once the samples have been taken.
Alternatively, if you have friends, family or colleagues who are trained phlebotomists please feel free to ask them to take the blood samples for you, we will send you the blood sample kit in the post with all instructions.
Medical Questionnaire
The medical update form is crucial – without this, we cannot proceed with testing your blood samples. Please ensure you complete and submit the online medical form before you have the samples taken or post your paper medical form to us with the blood samples.
Changes to your health
It’s natural that since joining our register you may have experienced changes in your health. It’s important that you let us know about any changes on the medical update form. We’ll treat all your personal details in the strictest confidence.
Hepatitis E virus advice
There has been a rise in the number of people acquiring the Hepatitis E virus in the UK over the last few years. The most common way people catch this infection in the UK is through eating raw or undercooked meat (particularly pork products) and shellfish. Please can we ask you to be really careful. Most healthy people infected with Hepatitis E have no symptoms, and the infection clears within a couple of months, but it can be very risky if transmitted to patients having a stem cell transplant.
Tattoos, body piercings and cosmetic procedures
There is a very small risk of exposure to transmissible diseases from some tattoos and body piercings. We ask that you consider delaying having any new tattoos or body piercings whilst being tested and if you are a match until after you have donated.
If you already have a tattoo or body piercing planned in the next few months, please discuss with your coordinator as soon as possible.
Your height and weight
The upper limit for Body Mass Index (BMI) is 40 for Peripheral Blood Stem Cell donation (PBSC) and 35 for bone marrow donation. Ideally donors should weigh over 50kg but we still allow people to donate if they are under that weight - it may just be harder for us to reach the target cell count depending on the size of the patient.
Confirming you’re a match
Please be patient. Testing can take up to 8 weeks from when we have received your blood samples and we will be in contact to confirm whether or not you’re a successful match. Both Anthony Nolan laboratory and the patient’s hospital are testing your blood samples. Sometimes several potential donors are identified at once. The hospital will test multiple samples to decide which donor is best for their patient.
Sometimes another donor is a better match for the patient and you will not be asked to donate. Which means you will be searchable on the stem cell register for other patients.
Deciding to donate
Deciding that you want to donate is a big commitment and you should consider it very carefully.
To help you know what to expect there is loads of information on our website including:
- Your Medical
- Things to consider
- Collections centres
- The PBSC Journey
- The Bone Marrow Journey
- The Lymphocyte Journey
- Resources for all donations
- Donating for research
Thank you for agreeing to donate. It’s a very special thing you’ve signed up to do, and for that reason, we want you to know as much as possible about the things you may encounter on your personal donor journey.
Here is some important information on things you may encounter on your donor journey, as well as things to consider before donating your stem cells. Please have a read through to ensure donating is the right thing for you.
The decision
Can you donate?
If you have any of the following conditions or diseases, or received treatment for them since joining Anthony Nolan, you will be unable to donate:
This isn’t an exhaustive list so be sure to speak to your coordinator at Anthony Nolan.
- Cancer (excluding basal cell carcinoma and cervical carcinoma in situ)
- Chronic obstructive pulmonary disease
- Insulin controlled diabetes (If you have Type 2 diabetes and it is well controlled with diet or anti-diabetic tablets, you’re still eligible to donate)
- Epilepsy (If you’ve had an epileptic event in the last year, or are currently requiring medication)
- Heart attack or angina
- Pulmonary embolism
- Autoimmune conditions, including rheumatoid arthritis
- Stroke or brain haemorrhage due to trauma
- HIV/AIDS
- Ulcerative colitis or Crohn’s disease You will also be unable to donate if:
- You’ve given birth within the last six
- months, or you are pregnant now
- You are very overweight or underweight (please see the following section ‘Your Height and Weight’ for more guidance)
Also, you may not be able to donate right now if any of the following apply to you:
- Someone you have had sex with is HIV positive
- You or someone you’ve had sex with is Hepatitis B or Hepatitis C positive
- Has taken or given money or drugs in exchange for sex
- Has been sexually active with partners from areas of the world where HIV/AIDS is common
- You’ve injected yourself with illegal or non-prescription drugs including body building drugs, unless it has been prescribed by a licensed medical professional
- Is involved in high-risk sexual practices that may increase your risk of exposure to transmissible diseases
- You’ve had a tattoo, body piercing or cosmetic procedure in the last three months at an unlicensed establishment
- You’ve had treatment with pituitary- derived human growth hormones
- You’ve received a blood transfusion given outside Western Europe, North
- America, Australia or New Zealand
When you fill in your medical update form we’ll ask if any of the conditions listed apply to you. If they do, we may need to contact you to find out a few more details. If you have any questions about these conditions, or are not sure if they apply to you, please discuss this with your coordinator.
The donation
How do I donate?
You will be asked to donate your stem cells one of two ways: a peripheral stem cell (PBSC) collection or a bone marrow collection.
Peripheral blood stem cells (PBSC) are blood stem cells that can be collected straight from the blood stream. This method is used 90% of the time.
Bone marrow is the spongy substance found in the body’s longer bones. The bone marrow is where blood stem cells are created before they mature into red cells, white cells or platelets, and are released into the blood stream. Gathering these cells is called a bone marrow collection.
How do I choose which way?
Read on for plenty of information about both procedures. Doctors treating the recipient of your donation will advise on which way is best for the patient. Also, our team is on hand to answer any questions. You’ll find a contact name and number on the email or letter accompanying this guide.
Where will my donation take place?
PBSC and bone marrow collections take place at our specialist collection centres. Staff at the centres are very experienced in both procedures.
When will my donation take place?
Usually it takes several months from when we contact you to the day of your donation. But in some cases it can be just a few weeks.
Changes to the patient’s condition can mean that the date of your donation may be moved, or even cancelled, at the last minute. However, we’ll let you know of any changes and try to fit your donation around your schedule as much as we are able.
Will I need an anaesthetic?
You do not require an anesthetic if you are donating PBSC. If you donate via bone marrow, you will have a general anesthetic and be put to sleep. The doctor will discuss this with you during your medical examination.
The donation
Can I bring a companion with me?
The majority of our specialist collection centres allow companions. We can make all the necessary arrangement for a companion and will cover their travel and accommodation costs.
Peripheral blood stem cell (PBSC) donation
What happens before the procedure?
Before blood stem cells can be collected, they need to be stimulated to make them circulate in your blood stream in larger numbers than normal.
We’ll arrange for you to have a course of injections for the four days leading up to your PBSC collection to stimulate the number of stem cells and bring them into the bloodstream ready to be collected.
The injections are a naturally occurring growth hormone called granulocyte-colony stimulating factor (G-CSF) and you may require up to 4 injections each day. The number of injections each day depends on your weight - it can vary between one and four injections.
You’ll be asked to take a pregnancy test before starting the injections if relevant. After the fourth day of injections, you’ll donate the next day.
What happens during the procedure?
PBSC donation is a common procedure.
A nurse will stay with you the whole time and you’ll leave hospital later that day. During the procedure you will be asked to lie on a bed or reclining chair while a needle is put into each arm. Blood is drawn out of one arm and fed into a cell-separating
machine. Inside the machine your stem cells are filtered out. The red blood cells are then put back into your bloodstream through the second needle.
How long does it take?
The procedure lasts approximately four or five hours and we always book in a two-day collection in case a second day of collection is required to meet the target cell count.
What happens after my PBSC donation?
Most people don’t need to take more than a day or two off work. One of our volunteers will ring you after your donation to see how you are and your progress will be monitored post-donation by our donor follow up team. Sometimes the recipient may require a ‘top-up’ of additional cells. This could be requested four weeks or four years after your donation (or longer!) but if needed it is most likely to be within the first year.
Possible risks, side-effects and after-effects
At your medical examination the doctor will tell you about all the possible risks, side-effects and after effects of a PBSC donation. G-CSF is given to over 15,000 donors around the world every year, and it has an excellent long-term safety record. While side-effects are common, they usually pass very quickly and there are some key things you can do to help such as taking simple pain relief.
The most frequent side-effect is mild bone and/or muscle pain which can be treated with paracetamol. If you need to take pain relief, we recommend taking paracetamol first to see if that helps. You can also take ibuprofen up until 24 hours before your donation (which means on days 1-3 of G-CCSF, but not on the 4th day). You must not take aspirin; this is due to the fact it can stay in the system and affect platelet function for 7 days).
Less common side-effects include:
- fatigue
- flu-like symptoms
- headache
- insomnia
- nausea
- vomiting
More serious side effects from G-CSF injections are extremely rare, however they have been reported and as a result we know what signs to look out for. We’ve included more details of the potential side-effects on our website below so you can be aware and know when to seek help. anthonynolan.org/donation-journey
Bone marrow donation
What happens before the procedure?
The day before the donation date you’ll be admitted to hospital where you’ll see an anaesthetist. The next day you’ll be taken to the operating theatre where the procedure will take place.
What happens during the procedure?
Bone marrow cells are collected from your pelvic bone using a sterile needle and syringe. Around one litre (depending on your weight, but never more than one-and-a-half litres) of marrow and blood will be collected. You won’t need any stitches but there will be insertion sites on the skin’s surface that will be covered with a bandage.
How long does it take?
The donation lasts around 30–45 minutes.
What happens after my donation?
Most people can leave hospital 24 hours after the donation. Before you are discharged, a doctor will check your red blood cell levels and may prescribe iron tablets if they are low. We strongly recommend that after your donation a friend or family member takes you home.
If they live far away, we can arrange their accommodation. If nobody can meet you, we’re very happy to help. And we’ll call you in hospital to check how you’re getting on, too.
We recommend you allow a week after leaving hospital before going back to work or doing energetic activity. The blood stem cells will be naturally replaced within a few weeks.
Does a bone marrow donation hurt?
Some donors experience mild backache, tiredness or stiffness for a couple of days which quickly wears off. Most donors are fully recovered within three weeks of donating.
The side effects after donating bone marrow vary from donor to donor, as everyone is different. To aid your recovery, we recommend that you take a multivitamin supplement for 2-4 weeks after you have donated.
Possible risks, side-effects and after-effects
At your medical examination the doctor will talk you through possible risks, side and after-effects. There is always a slight risk when you have a general anaesthetic and side-effects could include a sore throat (due to the tube that lets you breathe during the procedure), mild nausea or vomiting. These side-effects will quickly fade.
The questions
Can I claim expenses during my donation?
We don’t want you to lose out financially because of your donation so we’ll reimburse all reasonable expenses. This incudes paying for and arranging all travel and accommodation for you and a companion.
Am I covered by insurance?
We take out full indemnity cover on behalf of all our donors for the extremely rare event of physical or mental disablement or death. We’re happy to send you details of this cover. This incudes paying for and arranging all travel and accommodation for you and a companion.
We recommend that you let your insurance company know about this policy to ensure it doesn’t affect any personal cover you may already have.
Can I find out how the patient is getting on?
It may be possible for you to write to your recipient anonymously after the transplant, but not all countries allow donor-recipient communication. During your follow-up phone call 2-3 days after donation, the team will tell you if anonymous communication may be possible.
In order to maintain anonymity, we must abide by the following rules for any donor- recipient communication:
- Personal details such your name, address, specific details about your profession and any family details must be excluded.
- No photos or gifts may be exchanged.
- Donor-recipient communications must not be shared publicly.
Please bear in mind that even if your recipient is allowed to write to you, they might decide not to. We understand this may be upsetting but we cannot ask the recipient to write back.
Can I meet the patient?
Before your donation, and up to two years after, you can know their age group and gender. Both you and the person you’re helping will remain anonymous to ensure that no one feels under pressure to donate, or receives unwanted correspondence.
Depending on the regulations of the patient’s hospital and if you both want to, you may be able to meet them after two years. If this is something you’d like to consider contact our donor follow up team on donor@anthonynolan.org.
The future
Don’t be a stranger
We want to make sure your donation is a positive experience. After all, you’ve given someone a second chance of life. A member of our team will get in touch afterwards to see how you’re doing.
We’re always looking for ways to improve how we work, so we welcome your feedback. We will also keep a close eye on your recovery and will send you a health check questionnaire for the next 10 years, these are to make sure you are fit and well after donating. As you and the patient now share the same HLA, in a very small number of cases there are some medical conditions that you may develop as part of your normal life which may be relevant to the patient’s treatment, such as auto immune conditions and we may need to ask you some detailed questions about this. As well as complying with UK regulations, it’s a way of showing you our appreciation.
Sharing your story
We rely on publicity to gain support for our cause. We’ll never pass on your contact details, but if the media get in touch and you’d like to speak to them, please call a member of our team and they’ll guide you as we have to be careful about anonymity and accuracy. As a potential lifesaver, you’ll become very popular!
Staying on our register
We’ll take your name off our register for two years after you’ve donated. You’ll be reserved for subsequent donations that your recipient might need, but you don’t have to donate again. After two years we’ll place you back on the register, unless you tell us not to. There are three reasons we might ask you to donate again:
- The first donation fails or the patient needs more stem cells
Around 5% of the time, a new transplant will be needed within one-to-three months of the first. - The recipient needs white blood cells (lymphocytes)
This occurs in nearly 10% of cases and may happen months or years after your donation. Your white blood cells will be used to help the original transplant work better and may help the recipient fight the disease if it returns. - You are matched to a second patient
We contact over 600 donors every year, but only four or five people ever donate to a second patient. Two patients is the maximum you’ll ever be asked to help.
Now it’s your turn…
Thank you for taking the time to read our guide. We hope that you feel well informed about what happens before, during and after donation. The next part is up to you.
If you have any questions, please call your coordinator whose details are on the accompanying letter or email. Please complete the online medical update form as soon as possible.
The medical update form is crucial – without this, we cannot proceed with testing your blood samples.
At this stage, every second counts for the patient. So whatever you decide, please get in touch with us as soon as you can.
Publicity guidelines for donors
Aim of policy:
A transplant is a really challenging time for a patient – which is why it’s so important that we protect their anonymity (and yours, as well). So, when you’re sharing your story online, please DON’T:
- Include the time, date or location of your donation
- Give away any information about your recipient like their age, gender, or location
- Post any photos with the information label on your stem cell bag visible
- Share any anonymous correspondence you send or receive
Donors can:
It’s extremely important that you don’t try to identify or contact your recipient directly on social media, since this could compromise their privacy and anonymity. If you have any questions, just contact the Donor Follow Up Team at donor@anthonynolan.org or on 020 7424 6568.
- Mention @anthonynolan in your twitter posts so that we can follow your story
- Post a photo and your reason for joining the register to our Facebook page and let us know if you’re happy for us to share it
Donors should NOT share under any circumstances:
- Their patient’s location, age or gender
- Any other details about their patient which may have been given to them by their collection centre
- Photos of their stem cell bag (as it contains patient information)
- Anonymous correspondence with their patient
You’ve donated, what happens next?
Thank you
We’d like to say a massive thank you for doing something so incredible. You’ve made a huge difference to the life of your recipient.
As you have just donated blood stem cells or bone marrow – or you're about to – you probably have lots of questions. We’ve put together some information to help answer them.
The Donor Follow Up team will be your main point of contact now you have donated. Please give the team a call on 020 7424 6568, or email donor@anthonynolan.org if you have any questions or concerns about your recovery.