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DETAILS ON HOW TO JOIN THE STEM CELL DONOR REGISTRY

Details on how to join the Stem Cell Donor Registry
 
  1. Stage 1
 
Information
 
First, by going to the testing center, you will have to solicitate informations about what it takes to register into the stem cell donor registry, about the principles of stem cell donation, about the rights you have and about the stages you will go through. Also you will need to be informed about the stem cell harvesting procedure and you must take into consideration that, although you can change your mind any time, even after you signed the agreement form to join the registry, doing so when you are identified as a compatible donor for a patient that needs a stem cell transplantation means that there are big chances the patient will die,  ,  finding  a matching donor being extremely hard.
  1. Stage 2
 
Filling in the <agreement form and the medical questionnaire >
 
A. The agreement form
 
The agreement form contains fields where you have to fill in your personal data and by signing it :
 
1. You agree:
 
- To have a sample of your blood taken (same procedure as for any test that requires  blood sampling), in order to do the HLA typing – molecular-biology test that will determine the level of compatibility between the donor and the patient who will receive the stem cells, and also in order to have some tests that will determine if you suffer from any disease that would put the patient’s life or your life at risk.
- To join the National Stem Cell Donors Registry
- To remain registered into the registry, if possible, until the age of 60
 
 2.  You declare that you are aware of the fact that you can withdraw your consent , and as a result to  be deleted from the registry.
 
 3. You confirm that you were informed that:
 
- The donation will be voluntary, anonymous and there will be no financial rewards.
- The harvesting of the stem cells will be guided and watched over by a hematologist doctor from a specialized center   .
- You are not allowed to find out who is the patient that received your stem cells and vice versa, the patient can’t find out who is the donor
 
on very rare occasions, you might be asked to donate again, after a short period of time from the apheresis moment, for the same patient;
 
You will have to notify the registration center  any changes of your address, phone number, or significantly changes in your medical condition.
 
B. The medical questionnaire
 
Filing in the medical questionnaire helps evaluate, together with the virology tests, your medical condition at the moment of registration in order for the medical staff , in case you are compatible with a patient, to know about any particularities that could affect the harvesting process or to determine if any special measures are required during harvesting or during the transfer of the stem cells to the patient.
               
         3. Stage 3
 
Blood samples will be taken in order to perform the HLA typing and the virology  tests.
 
         4. Stage 4
 
Harvesting the stem cells
 
If you will be identified as a compatible donor for a patient in need of a stem cell transplant, a rare occurrence, (chances to be compatible with a patient are, according to statistics, 1/80 000 so some of donors are never asked to donate because of that), you will be contacted, you will be asked for your consent again, and you will be called in for a medical exam and blood tests in order to determine your health condition at that exact moment.
 
If you don’t suffer from any disease that would put your life or the life of the patient in danger, you will go through the process of marrow stimulation.  This will be done by injecting a substance called stimulation factor ( most frequently used is filgrastim, a substance that imitates the natural stimulation agent present in our bodies) that will determine the marrow to produce stem cells and then will determine those cells to migrate to the peripheral blood stream, in order for the apheresis to take place  ( the collection of the stem cells from the peripheral blood is called apheresis).
 
***Filgrastim is used based on a standardized protocol, its testing started in 1966; since then numerous clinical studies were performed, now its use is approved as a standard protocol in USA, Europe and Japan since 1991.
You can do the shots yourself after specialized training or somebody close to you can be trained to do them. Of course you have the choice to go to a medical center in order to receive the shots from specialized medical personnel.
 
Shots are administered during a couple of days, in the meantime  your blood will be tested periodically to determine if the number of the stem cells have reached the optimal number for performing the apheresis.
 
Some of the people receiving the stimulation factor accuse a mild bone pain, muscles pain, headaches, for which the doctor can prescribe painkillers.
 
The apheresis  procedure, which is similar to the blood donation procedure, has some particularities: it starts with placing a needle into the vein on each arm and then connecting the needles to the apheresis machine.
 
From one arm the blood goes out and through the  apheresis machine and returns through the needle in the other arm. During any moment of this procedure there is only a small amount of blood outside your body.
 
During the procedure you are monitored by specialized personnel.
 
You will be administered an anti-coagulant substance, in order to prevent blood clot during harvesting. You can also pay attention and request a replacement when the substance is almost depleted.
 
Also, you will be administered calcium, because the anti-coagulant is assimilated by bonding to the calcium molecules in the body and reducing the amount of calcium that is necessary to the organism, during the procedure.
 
 
 If the administered calcium dose is not enough, you will feel a mild numbness in your lips or nose, in which case you will need to tell the medical staff around you to tune up the dosage.
 
The apheresisprocedure takes between 3 and 5 hours.
 
The collection of the stem cells doesn’t  require hospitalization, when it’s done using the above procedure, most common case.
 
Before you leave the harvesting center, some routine tests will be performed on a blood sample taken just before the needles in your arms will be removed.
 
Regenerating the lost stem cells will be done by your body in a natural way with no side effects or symptoms.
 
In some very rare cases, the hematologist of the patient that will receive your stem cells could decide, based on the patient’s condition, to harvest the cells directly from the marrow.
 
The procedure, in these rare cases, will be done, if you agree with this type of harvesting, under general anesthesia in the operating room.   Harvesting is done by inserting a needle in one of the body’s large bones. Usually it’s the hip bone.
 
But I repeat, this procedure is chosen by the doctor only in rare cases, the preferred method is collecting the cells from the peripheral blood stream because it’s less invasive and it requires less recover time.
 
Some donor cell registries, from various countries, being formed long time ago when the procedure of harvesting stem cells from peripheral blood stream was not a standard, are still called Bone Marrow Donors Registry and the transplant was called bone marrow transplant.
 
 
 
Testing costs are supported by the National Registry of Donors and the costs for stem cell stimulation and harvesting are supported by the Health Ministry or, in special cases, by the patient or his insurance company.
 
What does finding a compatible stem cell donor means for the patient and his family? A new chance to live!
 
Although I never wanted to say it, this can happen to anyone, please believe me!
 
According to international statistics, in countries that have a stem cell registry, many of the cancer patients or any similar diseases, can get cured by doing the stem cell transplant.
 
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