Registration
Who can register?
The general criteria for registration are that you should be between eighteen to forty years of age and in good health. Now there are some restrictions and when you go to register the first thing you do is you fill out a medical questionnaire to exclude people who won't be able to donate and there are a number of restrictions on people who can or are able to donate. Often they're the same sort of restrictions you would find on for example being a blood donor. So if you are positive for HIV, if you are positive for hepatitis viruses then of course you can't donate because you would pass it on to the recipient as well. So there are some exclusions. You have to be above a certain weight because otherwise you won't have enough stem cells to sell. So you have to be more than eight stone or fifty one kilograms in weight. But the most important thing is that you should be between eighteen and forty years of age to be able to join the register. We have a preference, as I say, for males. And ideally a preference for younger males as being the optimal donors. What our research has shown and research in some other areas has shown that the best results are attained if the donor is a male under thirty years of age. And so that is the group we would really be looking for to go out and say, "If you're a young male, under thirty years of age but ideally between eighteen and forty, then you should be prepared to volunteer to become a bone marrow donor."
Why should I join the register?
You could be the only person in the world that could save somebody's life because of this individuality of matching of tissue types. And if you are the only person that's got the right tissue type for that individual and if you don't step forward, then there's nobody else that can help save that life.
What happens when I go along to register?
So, the first thing that happens when you go along to join is that you fill out a medical questionnaire, because we need to determine whether or not you are medically able to donate. And if you are, and after you have filled out the questionnaire out, you'll sit down with an advisor and they'll go through the questionnaire with you, and they'll let you know - yes, it's okay for you to be a donor, or they'll explain why it's not possible for you to be a donor and explain why you may fall below some of the medical criteria. At that point, you'll then give a small sample of blood - and it really is a very small sample. I would usually describe it as a couple of teaspoons full of blood. If you do this yourself - if you've contacted The Anthony Nolan Trust - and they've sent you the materials, they'll have sent you a tube to put the blood into, and you take that to a GP, and your GP will actually take the blood for you. If it's at an organized clinic, then there'll be a medically-qualified individual at the clinic, who will then take that blood sample and will then send the blood back to The Anthony Nolan Trust to be processed. So, it's that simple, you go in, you spend ten minutes filling out a questionnaire, and then you spend five minutes getting a small amount of blood taken from your arm, and it's that easy.
If someone agrees to join the register, what are they agreeing to?
What they are agreeing to, is to have the commitment to be a donor at some future point in time. You're not agreeing that… At the time you join the register, they're not going to take your bone marrow at that point. All they're taking is a small amount of blood and we put the information from that blood on the register that's on the computer. If a patient comes up in the future, who needs a transplant, then their tissue type is searched on the computer to find if it's a match. If you are a match, then you then have to become a donor, you then have to go through the national process. So, at the point that you join the register, what you're doing is you're making a commitment to be a donor at some point in the future. And if you think about it, it's a bit of a nebulous thing. Some people may not be called on for ten years, or twenty years and they have to maintain that level of commitment to say, well, actually, twenty years ago I was very enthusiastic and I said I'd join it, but now I'm called up to do it and they have to be prepared in ten, fifteen, twenty years' time to say, now I'll actually undertake the process that I committed to. And that's quite important because it is such an easy thing to do to join the register. All it is is filling out the questionnaire and giving a really tiny bit of blood, but what you're committing to do is to undertake a process some time in the future that could help save somebody's life when they need that help.
What happens to my blood sample?
The blood samples that are taken are sent back to the laboratories of the Anthony Nolan Trust. And in the laboratories, what we do is we determine the tissue type. I can go into complicated details about that, but basically what we do is we look at these genes that determine whether or not you're a match, a tissue match to someone else. If you are a match, your tissue can be transplanted into them. If you're not a match, it can't be transplanted into them. And that's, in simple terms, what the process is. So we will process the blood in our laboratories to determine that tissue type. And we'll also look for the presence of some viruses. Actually, it's not for the presence of the viruses, but it's for the presence of antibodies for those viruses that will tell us whether or not you've been infected by particular viruses. The reason for that is that there are some viruses which are persistent in individuals. They don't cause disease, particularly in a normal healthy individual, and you have them throughout your life. But if a recipient is positive for one of these viruses, and is transplanted from a donor who's negative, then there can be complications, because there won't be any immunity to the virus coming in from the donor, and that can cause disease. So in order to prevent that, we also match donors and recipients for whether or not they're infected with some of these viruses. So it's not simply that we look at the tissue type, but we also look for some of these other factors that can affect the outcome of a transplant.
What happens if I'm a match for someone?
If you're a match for somebody, then you'll be contacted. And basically at that point you'll be told you're a match. There'll be a second sample of blood taken just to make sure that you're healthy and able to be a donor. You'll have a medical again to make sure that you're able to be a donor, because you may have joined the register twenty years before, and a lot of things can happen to you in 20 years. So, there'll be a second medical just to make sure that you still able to donate. And if you are able to donate then and you are chosen as the donor for our patient, then you go through to a process where you'll either donate bone marrow or what we call peripheral blood stem cells.
What steps are involved in the whole process from registration through to donation?
The steps are medical questionnaire to determine of your eligibility to donate, a small blood sample from which your tissue type will be determined. That's put onto the computer and stored and can be searched with the tissue type of any patient who need the transplant and that can be any patient from anywhere in the world. If you're a matching donor there's a second medical to confirm your eligibility to donate and then you'll go on to the actual donation process itself. And there are two types of donation process, either a bone marrow harvest or a peripheral blood stem cell collection. And the procedures for both of those are slightly different. And the choice is usually made by the commission in the transplant center which of those two types of donation you give.
What is involved in donation?
When you come to donate, there are two types of donation that you can give. One is a bone marrow harvest, and the other is what's called a peripheral blood stem cell collection. The donation process is different for each of those two types of donation. For the bone marrow harvest, that is a procedure which involves an overnight stay in the hospital and a general anesthetic. What will happen is that you are given the general anesthetic, and then the bone marrow is recovered from the long bones of the leg by putting a needle into the pelvis. It's done under general anesthetic so there's no pain and no discomfort at that time. About a liter, one to two pints, of bone marrow is taken from the individual. When they come out from the anesthetic they may experience some lower back pain. They may experience some tiredness. It is generally recommended that they take themselves a week to recover from that procedure. The bone marrow that is taken will replenish itself within three weeks to a month after the harvest.
Do I need to be tested before I do it?
You will fill an automatic questionnaire when you join the Register, but it may be many years between joining the Register and actually being selected as a donor. So there is a second medical, just to make sure that you are still eligible to donate and to rule out any medical conditions that you've acquired since you joined the Register that may prevent you from donating, or anything that has developed subsequently that may prevent you from being a donor; you may have acquired a disease, which could, I suppose, rule you out as being a donor.
Can anything make me ineligible?
For example, if you join the register at age twenty you could develop an autoimmune disease and that would make you ineligible. You could have acquired hepatitis and that would make you ineligible. There are a large number of conditions, and the recommendation really is that if anybody feels unsure, and they're on the register and they have a medical condition, they can always ring the Anthony Nolan Trust. We're here to help. We're here to provide help for the donors. They can ring and discuss their condition with the Trust and they'll tell them, “yes, you're still eligible to be a donor, carry on being on the register.” We're here to give advice and help.
What common misconceptions are there about the bone marrow harvest procedure?
There are a couple of common misconceptions that people have and one of them is that they need their bone marrow taken at the time they join the register. They think they donate the bone marrow and the bone marrow is stored, and it's not. We just take a small amount of blood. It's the information from that blood that is stored rather than the blood itself or the bone marrow itself. It is not the first misconception. There isn't a big operation that is done at the time they register, to join the register. The other misconception, particularly with major bone marrow harvest is people think, "How do get it out of my bones? It is going to be a big operation. They have to crack open or break open your bones somehow and get this marrow out." But it really is quite simple. It's taken out with a needle and there is no scar. It is not a big operation. It only takes half an hour to 45 minutes. So I think people worry about the process. When they think about anything being stuffed inside the bones. They worry it will be painful to get it out. And it isn't really. And related to that, people are afraid that there might be something that is painful and they're afraid they will be experiencing that pain, that they will be awakened when the procedure is done, but in fact the bone marrow harvest is done under general anesthetic. So you don't know anything about it. You don't feel the needle taking the marrow from the bones at all. So it is a painless procedure, so we can say there may be some low pain afterwards, but it is treatable with aspirin and regular painkillers. It isn't a process that involves lots of pain. People shouldn't be afraid of it. I think the thing people are mostly afraid of is that they don't know what the process involves. And that's why it's important to do things like this and tell them what the process involves because it demystifies it all.
What is involved in the PBSC harvest procedure?
For the peripheral blood stem cell collections, what happens is that in the 4 to 5 days prior to the collection itself, you'll have injections of a hormone. These are given at home usually by a nurse that comes to visit your home. This hormone will then liberate the cells from the bone marrow into the bloodstream. They can be recovered from the bloodstream. On the day of the collection, you go to the hospital or transplant centre and you have a needle put in your arm which is connected onto a machine which separates the cells from the blood and puts the rest of the blood back in to you. You stay connected to that machine for about 4 to 5 hours while they take out your cells from the blood. You may have to go back for a second day or again spend 4 or 5 hours connected up to the machine. People just use it when they watch the news or watch TV. It's nothing particularly arduous; you just sit there and have your blood collected.
Are there any risks?
There are some risks associated with the procedures. For example, with the bone marrow harvest, because its a procedure that is carried out on a general anaesthetic. There are always risks associated with having a general anaesthetic. You may be allergic to the anaesthetic, for example, and not know about it. But, there are no more risks associated with the procedure then that would be associated with any other procedure that involved a general anaesthetic. And again, in any procedure where your skin gets punctured, there is always a risk that you could get an infection in the puncture wound, and again, there is no more risk associated with it than would be associated with getting an injection of any other type, and in general the same is true for the peripheral blood stem cell collection. There are very rare occasions where individuals have complications from having had the hormone, and there may be some additional, very minor risks associated with that, but there is nothing that is known yet to be particularly serious in terms of risks for individuals prepared to donate.
Will the bone marrow I donate replenish?
Yes. We don't take it all, and the whole point about it is that it grows itself. It will grow back to completely normal levels within about three weeks after the harvest.
Is there any contact with the recipient?
There's a move in this country to also go to no contact between the donor and recipient. This is just to remove any possibility for coercion between the donor and the patient, because there are occasions where the donor may have to give again to the same recipient.
How long will I be off work?
After a bone marrow harvest , it's recommended that you be off work for a week. And, after peripheral blood stems on collection it is wise to be off work for about two days. Any loss of earnings that you have, as a result of being a donor, will be covered by the Anthony Nolan Trust. We're not out there to disadvantage you in any way. You're doing something which is important, and you're helping save somebody's life. If you lose your pay because you've gone to be a donor, then you'll be reimbursed for that by Anthony Nolan Trust.
