Can I share my donation experience on social media?

Yes absolutely! We encourage you to share your story as it can help bust myths, spread the word and recruit more potential donors. There are a few things to consider when sharing your donation story online.We ask donors not to:1. Post the time, date or location of where you donated.2. Try and post a good few days after your donation, not in real time.3. Avoid posting photos with information about the city, hospital or collection centre you donated at. This also includes the label on the stem cell bag.4. Share any information about the patient you may have been told, including age, gender or diagnosis.5. Share anonymous correspondence you’ve sent your recipient or received.6. Going looking for or contacting your recipient. You can also share your story with us! Please contact donors@strengthtogive.org.au and let us know that you’d like to share your donation story.

FAQs & Donor Resources

Got a question or need more information?

We have a list of questions donors regularly ask us. There are also helpful resources should you require any further donation information.

Donor resources

Being on the registry

I have been diagnosed with a health condition

Certain health conditions may prevent you from donating. It’s crucial for your health and the patient’s health to let us know. Other health conditions may not prevent you from donating, but we still need to know about them so the patient’s medical team can make a fully informed decision. By letting us know when you find out can help speed up the donation process.

My gender expression or assigned sex has changed, or I identify as non-binary

Let us know by updating your details. We then update our records to reflect these changes. We do need to make you aware that for biological and medical reasons, we will still need to keep a record of your assigned sex at birth.

I’ve got married, moved house, or updated my email or phone number

Keeping us up to date with your contact details is vital as this is how we get a hold of you should you be a potential match. You can update your details using our form on the Strength to Give donor portal website.

I have personal reasons which may be relevant to donating

Not a problem. Get in touch with us by emailing donors@strengthtogive.org.au, letting us know your name, phone number and if you feel comfortable over email, your reasons. If appropriate, we will contact you to discuss this further.

You can usually transfer to another registry (please check with them first). If you plan to live in another country for a prolonged period or indefinitely, it’s best to move over. You can request your HLA typing from us to make the move easier. If you’re going overseas for a defined, shorter period, we can make you temporarily unavailable for the time you’re away.

Rest assured that you will remain on the registry even if you are over 35. 35 is the cut-off age to join the registry. You will stay on the registry until your 60th birthday. However, at 60, you will be retired from the registry. We retire donors at 60 for the health and well-being of both the donor and the patient.

You are eligible to donate right up until you are 60. Plenty of donors in their 30s, 40s and 50s donate their blood stem cells. It comes down to being the most suitable match for a patient, which factors in more than just age.

Being asked to donate

We first attempt to call you on the phone numbers you provided at sign-up or through updating your details. Then via email or SMS.

If we cannot reach you after a couple of times using these methods, we work with Medicare to obtain the relevant contact details in case the details we have are out of date. We do occasionally send a letter. However, reaching you can take a while, and time is precious when a patient is looking for a match. We will spend a good few weeks trying to contact you.

If we do not hear from you, we will have to decline the request from the patient team identifying you as a potential match. This can be quite a blow for the patient and their families, as sometimes they have limited matches to choose from.

If your contact details, phone number, email or postal address change, please let us know in case you are identified as a potential match.

It’s exciting news to learn you are a potential match for someone! There are a few steps you need to take before you can donate. First, you will undergo a couple of questions and tests to confirm you are the most suitable match. Often a patient will have more than one potential match, usually on average 8 potential donors. In some cases, you could be the only potential donor for a patient.

It can take a bit of time to process the questions and tests we need and send them to the patient’s medical team before we hear back as to whether you are the confirmed donor to proceed to donation. This part of the process can take between 2 and 3 months. Once you are confirmed, you will be informed and prepped for donation. This can take a couple of weeks. You’ll also find out more about when your donation day will be and what to expect.

The closely monitored experience of thousands of volunteer donors worldwide has shown us that donating peripheral blood stem cells (PBSC) once or twice and/or donating bone marrow once or twice is safe and has no effects on long-term health. However, there is much less data on people donating beyond those limits because registries have never allowed more.

For that reason, we continue to limit donors to a lifetime total of two bone marrow donations and two PBSC collections. This lifetime total includes any previous donations outside Strength to Give – e.g. for a relative or an overseas registry.

Because donation involves some iron loss in red blood cells, we recommend a 3-month wait after PBSC and a 6-month wait after a bone marrow donation before giving blood.

Also, suppose you have been reserved for a patient (i.e. you have been matched to a patient in need of a transplant, and we are waiting on the transplant centre’s final donor selection decision). In that case, we will ask you to avoid giving blood while you are reserved (the default reservation period is 3 months).

This is just in case you are asked to donate marrow stem cells at short notice to avoid donating with insufficient iron. Plasmapheresis and plateletpheresis donations are OK to continue during the reservation period.

Not while they are still low because a marrow stem cell donation further depletes iron stores. Low iron is a treatable condition. It may be possible to proceed with a Workup appointment while you are still on iron replacement treatment if there is enough time to delay donation until your iron levels are back to normal.

The only medications that would totally prevent you from donating are those that stop clotting – for example, warfarin or heparin. They would cause a risk of excessive bleeding in the donation process and are generally used for a condition that may prevent you from donating. These medications would also affect the quality of the donation.

There are a few other medications that could potentially affect the recipient. If there is no risk to you (i.e. the donor), then we would typically allow the transplant centre to weigh the risk to their patient against the risk of using another donor. In most cases, the medications are not a problem – it is more likely that the condition(s) being treated will be more significant.

You cannot donate marrow stem cells if you are pregnant. The standard testing for donors at their Workup appointment before donating will include pregnancy testing for any donor who could potentially become pregnant. A positive result will mean a donor cannot proceed to donate. For this reason, we ask donors to avoid the possibility of pregnancy during the pre-donation period.

This means that donors who are not pregnant but are actively trying to conceive should not volunteer to donate. If we contact you as a possible match for a patient during such a time, please let us know so we can make you temporarily unavailable on our system.

Preparing to donate

The G-CSF (Granulocyte colony-stimulating factor) injections we use for PBSC donations are a man-made version of the naturally occurring hormone that stimulates the production of white blood cells.

The injection itself is not painful, but the effects of the hormone can include generalised aching. This is because the hormone is one of the chemicals called cytokines that our immune system uses to fight infection, and cytokines can cause influenza-like symptoms similar to when they are released to combat influenza and other infections.

In the short term, G-CSF causes a temporary increase in your bone marrow’s production of white blood cells. It also acts as a cytokine (a chemical that our immune system uses to fight infection) which can cause side effects like aching and fatigue – symptoms typical of your immune system’s response to an infection.

In the long term, the closely monitored experience of thousands of volunteer donors worldwide has shown us that marrow stem cell donation is safe and has no effects on long-term health.

If you test positive for COVID, are a close contact or start to feel unwell before an appointment or the lead-up to donation day, please immediately contact your Donor Support Coordinator and/or the Collection Centre Coordinator. We may need to reschedule or conduct additional tests.

A mild illness is not usually a barrier to donating marrow stem cells. Still, during the pandemic, government or hospital rules may restrict collection from a donor who tests positive for COVID-19.

Blood stem cells are like bone marrow but float in your blood. Stem cells extracted from a donor’s blood are transplanted into a patient to help them build a new immune system to eradicate the initial blood cancer diagnosis. Blood stem cells are usually extracted by a peripheral blood stem cell donation (PBSC).

Bone marrow is the liquid found in your bones. Bone marrow is usually extracted directly from your hip while you are asleep. This is done in an hour, where a thin needle is inserted into your hip, and marrow is extracted. They are also designed to help a patient build a new immune system. Bone marrow is usually taken by undergoing a bone marrow donation.

Peripheral blood stem cell (PBSC) donation is the most common procedure to remove stem cells from a donor’s blood. 90% of requests made by patient medical teams ask for PBSC.

A bone marrow donation is asked for less frequently. 1 in 10 is asked to donate this way. The patient’s medical team will usually request a bone marrow donation if the patient is a child.

We try to ensure you will donate at a collection centre/hospital in the same state you live in, usually in a city. If you are located regionally or have been asked to donate interstate, we cover and organise travel and accommodation for you and your support person.

Rest and relaxation are key to preparing for your donation. This is particularly important if you donate your peripheral blood stem cells (PBSC) and have been given G-CSF injections before the day. You may find yourself achy and sore. So we ask you to avoid any strenuous activity while injecting G-CSF.

For bone marrow donations, the collection centre or hospital you are donating at will provide you with instructions on what to do before your scheduled procedure. It can include things like fasting before your general anaesthetic.

We are also asking donors during the pandemic to avoid crowded places and minimise contact with others outside of their household 7 days before their scheduled donation. This is a critical time for patients whose immune system has been removed, so they are ready for their bone marrow transplant.

We do completely understand, however, that even if you take all the precautions, you may still end up testing positive for COVID. If that is the case or you generally feel unwell, please contact your Donor Support Coordinator immediately.

Donation day

There are a few things to consider bringing with you on donation day. We have a checklist of things to pack/bring, which you might find helpful.

If you’re donating bone marrow, you can find these tips here. If you’re donating by PBSC, you can find our checklist here.

When donating by bone marrow, you are put under general anaesthesia for the procedure. Once you are under, the procedure can take up to one hour to complete. You’ll then be moved into recovery as the effects of the anaesthesia wear off.

Some collection centres may require you to stay overnight or near the hospital for a couple of days (where accommodation has already been arranged for you). This is to make sure you have no adverse reactions to general anaesthesia. Others may let you head home the same day. Your collection centre will be able to provide more information on the procedure.

When donating by PBSC, the procedure can take between four and six hours, depending on the number of blood stem cells needed. There will be some waiting time before and after the procedure, too. Expect to spend the best part of a day at the collection centre.

Sometimes, a second day is needed if not enough blood stem cells were collected on day one. Usually, day two takes less time to complete. You also should consider asking a support person or take a taxi to drop you off or pick you up on donation day.

Sitting still without being able to move your arms for four to six hours may prompt the need for the toilet. Collection centres have various ways to help in this scenario. A bedpan or a medical urine bottle is the most common way. Collection centre staff will be able to assist you if required.

After donating

Recovering from PBSC is like recovering from a blood donation. There are usually no after-effects, but it’s a good idea to avoid strenuous or risky activities for the rest of the day because some people feel woozy and can even faint. You also should consider asking a support person or take a taxi to drop you off or pick you up on donation day.

It might take longer to get over the side effects of your G-CSF injections. No two donors are the same, with some returning to work the next day and others taking a few days to resume normal activities. Most donors will be fully recovered within a week, however.

The immediate after-effects of the general anaesthetic should resolve well within the mandatory observation period.

Once your initial pain relief wears off, you may also feel some aching in your hip or back where the procedure took place, but that should only last a day or two,
depending on the amount of bruising. Extensive, colourful bruising around the back of your hips could take a bit longer to settle down.

The other effect you might expect is the loss of iron from red blood cells, which come out as part of the bone marrow donation. Any bruising will also contribute to iron loss. Depending on your situation, iron depletion can cause fatigue or even anaemia, so you will be advised by the collection centre staff on what your risk is and what you can do to reduce it.

Yes absolutely! We encourage you to share your story as it can help bust myths, spread the word and recruit more potential donors. There are a few things to consider when sharing your donation story online.

We ask donors not to:

1. Post the time, date or location of where you donated.
2. Try and post a good few days after your donation, not in real time.
3. Avoid posting photos with information about the city, hospital or collection centre you donated at. This also includes the label on the stem cell bag.
4. Share any information about the patient you may have been told, including age, gender or diagnosis.
5. Share anonymous correspondence you’ve sent your recipient or received.
6. Going looking for or contacting your recipient.

You can also share your story with us! Please contact donors@strengthtogive.org.au and let us know that you’d like to share your donation story.

There are a couple of things that happen once you have donated.

Your blood stem cells will make their way to your recipient, and they will undergo a blood stem cell transplant. It is like a blood transfusion. Sometimes a second donation is needed for the recipient. This happens in around 5% of cases and is usually requested within the year of the first donation.

Sometimes a recipient may need white blood cells (lymphocytes). Preparation for this is more straightforward and doesn’t require any injections. White blood cells are removed from your blood and can take approximately four to five hours.

If you are a blood donor – you’ll be able to resume blood donations:

For PBSC donations, after three months
For bone marrow donations, after six months

Once you have donated, other patient teams will not be able to search for you for two years post-donation.

If you want to hear about your recipient’s progress, we will ask you about your preference post-donation when we follow up with you. It is also possible to write a letter or card to your recipient. There is a potential to exchange contact details after two years of exchanging correspondence if both parties agree. Please note, though, for some countries, donors and recipients cannot ever contact one another.

You can request updates on your recipient’s progress at specified intervals. Just ask your Donor Support Coordinator. Please note your coordinator relies on the patient’s medical team to update us about the recipient, which means we don’t always find out how the recipient is doing.

It isn’t possible to provide a specific estimate of your recipient’s chances of survival. Accurately estimating a patient’s chances of survival is very difficult in the first place, and we also need to respect the recipient’s privacy.

The most important thing to remember is that a bone marrow transplant is a highly risky treatment that can only be justified if a patient has no chance of a cure otherwise. Therefore, your recipient’s chance of surviving without being transplanted can be assumed to be zero (noting that most recipients will have other potential options for a transplant source).

Once you have donated, you will remain on the registry. However, for two years post-donation, you will not appear in search results for other patients. You may be contacted to donate again for the same patient in this period.

After two years, you will become fully searchable again in case you are a potential match for another patient. Remaining on the registry is entirely your choice.

From your 60th birthday onwards, you will be retired from the registry. This is to ensure the safety and well-being of both donors and patients.

General

No – life expectancy is not reduced in volunteer donors of marrow stem cells. We have decades of good evidence from thousands of volunteer donors showing no long-term effects on health.

This is consistent with the fact that PBSC and bone marrow donation removes only a tiny proportion of the available marrow stem cells and that these cells, by their very nature, replace themselves.

It is your choice as to whether you stay on the registry. If you choose to leave, please fill in our online form requesting to be removed. This form can be found in the update your details section of the donor portal.

It’s natural to want to find out all you can about donation. You can join the Strength to Give Facebook group.

This group is designed to ask questions, share experiences and learn more about donation from other like-minded donors. If you have a Facebook account, click on the link above. To join you will need to answer a few questions. One question asks for a code word. This helps us identify you as a donor on the registry. Please use code word: DonorFAQ993.

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