What at the chances of being a match?
The chances of you being able to donate to a brother or sister are only 25 percent. The chances of you being a match to a stranger is much smaller. Only 1 in every 1,500 people registered on the Australian Bone Marrow Donor Registry (ABMDR) are ever being called upon to donate.
But, if YOU end up being that person who can potentially save a life… well, you need to know exactly what is expected of you in order to save a life.
Remember, you can pull out at ANY stage, and you will not be allowed to donate if the doctors find any reason why you donating your stem cells could be dangerous for either you or the patient. Just know there is a point of no return where a week before you donate your stem cells, that patient is now totally reliant on you. No pressure…
Knowing all the facts about the donation process up front will give you all the knowledge you need to know if you are up for it. If you decide you are, all that’s needed is to fill out a form and to provide 4 cheek swabs, then you will be notified once you are officially enrolled on the Australian Bone Marrow Donor Registry, the ABMDR.
If you have a massive fear of needles, a fear that could potentially cause you to back out if you ever did get that call, we will actively encourage you NOT to sign up as that could be devastating to the patient. There are other ways you can help.
There is no cost to you
If you are a match you will need to travel to one of the hospitals in your state. The ABMDR will pay for your travel to and from the hospital along with any accommodation which may be needed. They will also cover all medical and hospital expenses related to the stem cell donation.
The only thing you will be asked for is some of your time, and of course some of your stem cells.
Please note that donating your stem cells is completely voluntary. Stem cells donors are generous souls who receive no payment other than to cover actual expenses.
Donor Work Up (pre-testing)
If you are one of the special people who come up as a match, you will be required to start the ‘Work Up’ process. This will involve:
- a counselling session who will walk you through the entire process and make sure you are prepared for the lifesaving process ahead
- a physical by a doctor to make sure you are fit
- a blood and urine test
- the collection of your stem cells from either your blood or your bone marrow
The doctor and nurses will make sure you are comfortable with the process and will give you all the information you need. Again, you can change your mind at any time, but we hope by now you will know what is involved and will be happy to proceed, knowing you are about to do something incredibly special for someone in need.
The two ways of donating
There are two ways to donate – via the blood stream or directly from the bone marrow. The doctor may have a preference depending on the patient, but the decision will ultimately be based upon what’s best for the donor, and the donor always has the ability to choose.
Peripheral blood stem cell (PBSC) donation
For 90 percent of people, donation is via the blood stream. In this method, you would have a small daily injection of hormone-like substance called granulocyte stimulating factor (G-CSF) over four days. This stimulates the production of stem cells which leach out into your blood stream. By day 4 your joints may be a little sore as your bone marrow starts pumping out stem cells, and some people can get some flu-like symptoms for a few days, but for the most part it’s a small price to pay to save a life. On day 5 you have a trip to the hospital and get to sit in a chair for 4 or 5 hours. A needle is inserted in one arm, your blood goes through a machine which filters out the stem cells, and the rest of your blood is immediately returned via a needle in the other arm. Best to being a friend or an iPad to while away the hours. On rare occasions, if not enough stem cells are collected you may be asked to come back the next day but most people can go home straight away.
Bone marrow collection
For 10 percent of people, the doctor may request stem cells be collected directly from the bone marrow. Generally, this is only requested when the patient is a child. This procedure is done in a hospital under general anaesthetic. The doctor inserts a needle in your hip bone to withdraw bone marrow tissue and stem cells. The procedure takes roughly one hour and you may leave that day. In rare cases you may have to stay in hospital overnight.
The risks of donating stem cell this way is the same for any procedure involving a general anaesthetic. The transplant coordinator and doctor will talk you through the process and remind you what a wonderful thing you are doing. Of course, all expenses are covered by the ABMDR. The only thing you will need to arrange is a day off with your employer but we hope they will be just as impressed with what you are doing as we are.
After donating, most people are normally back to their normal activities within a day or two. If your stem cell donation comes directly from your hip bone, there will be a few days of being sore around the needle site but paracetamol will usually help. Your body rapidly re-grows the donated marrow and by the following month you will have normal levels once more.
The ABMDR will contact you within 72 hours of donation and weekly until you are fully recovered and have resumed your normal activities.
If you have donated peripheral blood stem cells, you will be asked to see your GP after the donation to ensure you are fit and healthy. Your health is just as much a priority as the patients.
Life After donation
The ABMDR will call you at three months and annually for up to 10 years to check your general condition.
After donation you are removed from the registry’s active list for a period of two years, with the exception of the same patient. The patient now has your immune system so if anything goes wrong you may be called upon to donate again. You may also be asked to donate other blood products such as white blood cells or platelets.
It is highly unlikely that you would be asked to donate to more than one patient needing a transplant, although it has happened, and of course the choice is completely up to you. You remove yourself from the ABMDR at any time simply by calling the ABMDR on 13 14 95.
Can I contact the patient I’ve donated to?
It is only natural to want to know about the patient and their wellbeing. The transplant coordinator may be able to provide you with information about how the patient’s progress at 30 days and 12 months after the transplant date. However, protecting the anonymity and confidentially of both the donor and the patient is a priority for the ABMDR.
The ABMDR allows anonymous communication between you and the patient. This can include correspondence or exchange of gifts, but no personal information such as name, date of birth or address may be disclosed.
The ABMDR discourages direct contact between donors and patients but does recognise that you and the patient may decide that, after receiving counselling about the implications of this decision, you want to release details to the other party. If you want to release your personal details you need to wait two years after the donation date and then you will need to sign a consent form. Ask the team looking after you for more information.