F.A.Q.
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On this page, we answer the most frequently asked questions about stem cell donation. Do you not see your question in this overview? Please contact us.
Topics
Become a stem cell donor
I am on medication/have a (medical) condition. Can I still become a stem cell donor?
Taking paracetamol, birth control pills or ADD/ADHD medication is generally not a problem, which means you can still register as a stem cell donor. Take a look at the page 'Who can become a stem cell donor' for more information about the conditions/types of medication that will (not) prevent you from becoming a stem cell donor.
Can I register for one patient?
You cannot register for one specific patient; you register for all patients who are in the same situation. The chance of a match is very small, so in order to find a suitable donor for as many patients as possible, many potential stem cell donors are needed. You will be called as soon as you are a match with a patient.
What happens to my cheek mucosa samples?
Matchis will send the cotton swabs containing your cheek mucosa samples to a laboratory, which will use them to isolate your DNA. The lab does not receive any personal data concerning you, only a barcode that can only be traced back to you through Matchis.
The DNA forms the basis for determining your tissue profile (HLA), which is used to match you to a patient. To update your tissue profile with new characteristics when technological developments allow, the lab will store your DNA indefinitely. This means an even more accurate match can be made over time. Matchis will never share your personal data with the lab without your explicit written consent.
I am already a blood donor; can I also become a stem cell donor (or vice versa)?
Yes, absolutely! It is certainly possible to be both a blood donor and a stem cell donor. If you get called up by Matchis as a potential match and you are reserved for a specific patient, we ask that you do not donate any blood during this period. This ensures that your body is optimally prepared for a stem cell donation.
We also recommend not donating any blood for a period of six months after donating your stem cells to allow your blood values to return to normal.
Registration process
What happens to my personal data if I decide to deregister?
If you decide to deregister as a stem cell donor, Matchis Caribbean will delete your personal data from its registry. Of your birth date, only your birth year is stored. Your name, address and hometown are also deleted. This means any personal data that were shared with other organizations (e.g. the laboratory that determined your tissue profile or foreign transplantation centers) can never be traced back to you as an individual. After all, these organizations only had access to the unique number (i.e. pseudonymized data) that only Matchis could link to your personal data. After you deregister, that is no longer possible.
I have been rejected as a donor for medical reasons. If I accept the risks myself, is it allowed?
We do not accept any elevated risk whatsoever for our voluntary donors, as the medical procedures they undergo offer no health benefits for them. We are very strict about this and a donor physician's decision is final.
A donation with an elevated risk is not allowed under any circumstance, not even on the condition that the donor personally accepts this risk. In addition to the safety of our donors, we must also protect the safety of patients, who are negatively impacted if a donation is canceled or terminated at the last minute due to complications with the donor.
Furthermore, it is our duty to ensure that stem cell donation continues to be known as a safe procedure in order to maintain the system of voluntary donations.
I am pregnant. Can I register as a stem cell donor?
You can still register as a stem cell donor if you are pregnant. Your pregnancy does not affect the collection of cheek mucosa samples with the cotton swabs. However, you are only allowed to actually donate stem cells from six months after your pregnancy and provided that you are not currently breastfeeding (or are willing to stop breastfeeding for a week).
We therefore ask that you inform us about your due date via the contact form. Once your registration is complete, we will temporarily set your donor status to ‘non-active’ in your system.
I have registered but haven't received a confirmation email
This is possibly due to a mistake with the email address or a technical error. Contact us via our contact form.
I have already been typed for a family member, why do I have to do this again?
Just because your HLA typing has been determined for a sibling or other family member does not automatically make you a stem cell donor with Matchis Caribbean. For that to happen, you must register as a stem cell donor and collect cheek mucosa samples using our registration kit.
The reason why we want to repeat the HLA typing is because a hospital performs a less comprehensive typing procedure. A detailed typing is only performed once you are actually found to be a match with a family member.
That is why we want to send new cheek mucosa samples to our lab, so a detailed typing can be performed and the chance of finding a match increases.
Donation process
How are my stem cells collected?
There are two ways to donate stem cells: via your blood or via your bone marrow. You can learn more on the page 'How stem cell donation works'.
Are there any risks of side effects?
Stem cell donation via the blood
Side effects of G-CSF
Administering the growth factor G-CSF may cause mild to moderate bone and muscle pain as a side effect, which is easily treated with paracetamol. Some people experience flu-like symptoms like fatigue, mild fever and/or headache. Some donors report that they have trouble sleeping or experience a slightly elevated body temperature while using G-CSF. Side effects such as nausea, night sweats and dizziness occur rarely. Occasionally, the injection site may become irritated. These symptoms generally pass within one or two days.
One of the side effects of G-CSF is that it may exacerbate the symptoms of autoimmune diseases, asthma and allergies.
The long-term effects of G-CSF
Currently, no long-term adverse effects of G-CSF are known. Studies have focused primarily on a potentially elevated risk of conditions such as cancer. This substance has been used for this application in healthy donors since the early 1990s.
Side effects of extracting stem cells from the blood
The process of donating stem cells via the blood may take up to six hours. For a number of hours, part of your blood continuously flows through the machine. As your blood cools down outside your body, you may feel cold during the procedure. In that case, a blanket can help.
Along with your stem cells, the machine may also collect some blood platelets. This means the number of blood platelets in your body may decrease. Your blood platelet count is therefore checked both before and after the donation procedure. Generally, the number of blood platelets does not become low enough to be a problem.
Stem cell donation via the bone marrow
Pain?
Donating stem cells from the bone marrow is painless, as this procedure is always performed under general anesthesia. For this method of donating stem cells, the standard risks of anesthesia pose the largest risk. After recovering from the anesthesia, you may still feel a bit drowsy. The ventilation tube that is used during the procedure may also cause a rough feeling or soreness in your throat. This will usually pass within a few days.
You may also experience headache and/or nausea. These symptoms will generally pass by the following day.
Extraction
The stem cells are extracted from the rear edge of the pelvis using a thick needle. For the first few days, you may experience a sore, painful feeling at the puncture site. This is easily treatable with paracetamol. The pain will recede after a few days, although it may take up to several weeks for the feeling to go away entirely.
Anemia
As the bone marrow in the pelvis is highly vascularized, a relatively large volume of blood (circa one liter) is also extracted along with the bone marrow. This can cause mild anemia, which can make you feel fatigued. Your body will quickly produce new bone marrow and blood to replace what was taken and the anemia will pass after several weeks. If necessary, iron tablets can help.
Who decides what method is used to donate the stem cells?
The patient's attending physician chooses the method that is best for their patient. As a donor, you can consent to the chosen method; after all, stem cell donation is always voluntary. If your choice does not match the attending physician's preference, that means you will not be a donor for that specific patient.
Based on the type of patient and their condition, it is determined what donation method is best suited for them. There are differences in the properties of the donated ‘product’ between the two types of donation (via the bone marrow and via the blood). As a result of these different properties, the effect that the stem cell product has in the patient's body differs per donation method.
Differences
When donating via the blood, the product contains a large number of stem cells, which means it can take effect more quickly and the new stem cells can start producing new blood cells faster. The product also contains many white blood cells, which can have a positive effect on the patient's leukemia. A downside of the presence of these white blood cells is that they can trigger so-called graft-versus-host disease (GvHD). That means that the donor's stem cells may start to attack the patient's body.
When donating via the bone marrow, the product contains fewer stem cells and white blood cells. On the other hand, it does contain other components that make the product more effective against certain conditions. When donating via the bone marrow, GvHD is also less common. In the Netherlands, bone marrow donation is currently used to treat specific conditions (e.g. aplastic anemia). Using a bone marrow product is also strongly preferred when the patient is a child.
Besides the preference of the patient's attending physician and that of the donor, the donor physician also gets a say in choosing the donation method. If a donor is not eligible for a specific donation method, the alternative donation method may be chosen in consultation, even if this is not the preferred method of the patient’s attending physician.
Will I be called up often to donate stem cells?
No, the chance of a match is very small. That is why we need as many potential donors as possible in the global donor registry. Some donors are called up after just three months, while others may wait three years, fifteen years or never get called up at all.
When will you contact me to donate my stem cells?
If you are a potential match with a patient, we will contact you. You could be registered as a donor for a long time before we contact you. If this happens we will always ask if you are still prepared to donate cells.
Only then – after you have received extensive information and have had a full medical examination – will the donation of stem cells take place.
How is the match with a patient made?
What donor is the best match for a patient is ultimately determined by the patient's attending physician. The key factor in this decision is your tissue or HLA typing (stem cell information). It has to match that of the patient. We will contact you if you are a (potential) match with a patient. You do not have to do anything yourself. If you do not hear from us, that means you are not a match.
When someone registers as a stem cell donor, their HLA typing (tissue typing) is determined using cheek mucosa samples collected with cotton swabs. The HLA typing predominantly determines if a donor is a good match for a patient. The patient's body uses the donor's stem cells to build its new immune system. If the patient's body rejects the donor's stem cells as foreign or if the donor's stem cells view the patient's body as foreign, serious or even lethal complications may occur.
It is therefore important that the tissue typing of a donor's stem cells matches that of a patient as closely as possible. Finding a donor with the right tissue typing is called ‘matching'.
The key factors for making a match are:
- HLA (Human Leukocyte Antigen) is the most important factor. It must be the same or match as closely as possible. Ideally, we are looking for a 10-out-of-10 match.
- Age is another very important factor. A young donor is preferable because the quality of their stem cells is higher and the transplantation of the cells into the patient's body is more likely to succeed. In addition, the risk of complications for the donor increases as they get older.
- Gender is another factor we take into account. Male donors are generally preferable, as their bodies have more stem cells. Some female donors may have been pregnant at some point. This makes their stem cells less suitable for donation, as it increases the risk of rejection symptoms for the patient.
- CMV, also known as the cytomegalovirus, is a generally harmless virus and many people have undergone a CMV infection without even realizing it. However, this virus can cause problems for a patient receiving a stem cell transplantation. That is why we want to know if a donor is CMV positive or negative (i.e. if they have been infected with the CMV virus or not). If a CMV-positive patient receives stem cells from a CMV-negative donor, this can cause serious problems for the patient. To a lesser extent, the same principle applies if a CMV-negative patient receives stem cells from a CMV-positive donor.
- Urgency for the patient, i.e. how urgently a patient needs the stem cell transplantation, is another important factor in the choices we make. We may e.g. choose a donor from a nearby country or opt for an alternative such as umbilical blood, because this is faster.
- Lastly, we consider such factors as the donor's weight, high-risk behavior, travel history in recent months and their availability.
Are my expenses covered when I donate my stem cells?
All expenses incurred during the stem cell donation process are covered by the patient's health insurance. The travel and accommodation costs for your trip to the Netherlands are covered by Matchis. You do not receive any remuneration for the actual donation, as stipulated by law.
Do I have to spend a long time in the hospital for a stem cell donation?
When you donate stem cells via your blood or bone marrow, you will spend a day in the hospital.
As the stem cell donation procedure is performed in the Netherlands, you will travel to the Netherlands a few days before the scheduled date of the procedure. When you donate stem cells via your blood, you will arrive circa six days before the donation date. You can return home five to seven days after your procedure. In total, you will spend circa two weeks in the Netherlands.
When donating stem cells via your bone marrow, you will travel to the Netherlands one or two days before the scheduled date of the procedure and can return home circa seven days after your procedure.
How often can I donate stem cells? Can I still donate my cells to family members afterward?
Our policy is that a donor can be called up to donate their stem cells a maximum of three times. Medically speaking, it is possible to donate more than three times; in that sense, stem cell donation is more akin to blood donation than organ donation. The body quickly produces new stem cells to replace what was lost.
If you are a match with another patient, we maintain a waiting period of at least one year. If it concerns the same patient as before, you must be fully recovered from your last donation and there is a minimum waiting period of six weeks. It goes without saying that every donation is entirely voluntary.
Once you have donated stem cells three times, you will still be available to family members who need a stem cell donor. There is no limit to the number of times you can donate your stem cells to family members. It does not affect the number of times you have donated to an unrelated patient.
General
I want to access/amend my personal data
You can have your personal data amended by sending us a message via the contact form.
You can request your HLA typing via this form. Send the completed form and a copy of a valid ID (remember to cover up your social security number or make a copy using the KopieID app) to Contact@matchiscaribbean.com. We will send you the requested information securely via Zorgmail.
How can I deregister as a stem cell donor?
You can deregister as a stem cell donor via our contact form. If possible, you can also list your reason for doing so. You will receive a confirmation of your deregistration from our staff.
I am moving abroad. Do I have to deregister as a stem cell donor?
If you are moving abroad for an extended period of time or indefinitely, please let us know via the contact form. We will deregister you as a donor, after which you can reregister in your new country.
I have been a stem cell donor (for years) but no longer meet the criteria, now what?
If you are not healthy or have a condition that precludes you from being a stem cell donor, please let us know. We will either deregister you or temporarily set your donor status to non-active. Send us a message via our contact form.
Please include the (medical) reason in your message.