Bone Marrow Donation - Are You Registered
This article is about bone marrow donation. I've always told others that I talk with - regarding writing online - that the one subject I wouldn't touch (for money) is cancer. But earlier this week I received the news that my brother-in-law and long time friend Steven has got CLL - or to give it it's correct name Chronic Lymphocytic Leukemia.
Of course it was unwelcome news. Shocking if I'm honest. No doubt not even close to how Steven and my sister Annabel felt. So instead of talking about cancer - because that's been done to bloody death (pardon the pun) - I'd rather write about donating bone marrow.
That's one of the harsher sides of contracting leukemia - knowing that there's a potential cure yet also knowing that the likelihood of locating a bone marrow match is pretty slim. And that because there are too few donors and too many sufferers.
Bone Marrow Register
I know what I now know due to the various bone marrow registers and hunting through the facts and figures. Luckily my sister is also a state registered nurse and from Steven's perspective she'll understand better what's coming, the treatments he's likely to undergo and so on.
Roughly speaking there are over 15 million donors currently registered world wide. Narrowing it down country by country isn't easy, the stats are confusing at best. What is easier is to present it like this:
- around 30% that need a bone marrow transplant are lucky enough that they have a relative match within their family group
- that leaves 70% hoping that one can be found on a bone marrow register
- Those that are of a Jewish, Asian, African, Latin or Chinese descent have even less chance of finding a donor match
- Donors (generally) need to be under 60 years of age - this relates to the need for registering and keeping potential bone marrow donors on file for as long as possible and the cost of testing the donor
- the saddest stats of all are these: there simply aren't enough bone marrow donors registered around the world to cope with the amount of people that require a donation
Back to the 15 million or so registered donors - here's the really frightening figure:
- this is how many people there are globally: the current world population is 6,896,656,884
I'd say that there's room for more of us to get ourselves registered. Of the 6 billion or so people, many will be too old or too young. Others will be ill or unable to donate simply because something in their physical makeup prevents them from doing so.
Others will be in situations too horrible to contemplate - helping others will be impossible as they may well be unable to help themselves. And yet that still leaves a whole lot of very healthy people.
Bone Marrow Test
So the question is: what is a bone marrow test for a potential donor and what does it entail? In the US it is usually done by taking a swab from the inside of the mouth - the inner cheek. In the UK it can be done by way of a simple blood test. Many of those that donate blood can be tested without having to set up a special appointment.
The other form of bone marrow test is the one performed on the patient - prior to diagnosis. This is usually performed by way of what's known as a bone marrow aspiration. It's a procedure that involves having some bone marrow fluid removed via the insertion of a needle into the bone, usually around the side/rear hip area.
It's performed using a local anesthetic and though it's an uncomfortable experience it's not wholly painful. Steven had his last Monday and said that whilst it wasn't particularly pleasant - it wasn't as bad as he'd expected.
Bone Marrow Donation Procedure
The bone marrow donation procedure is a little more invasive than the test. It requires your attendance at a local medical center or hospital. The more common method is to take bone marrow from your blood whilst it circulates.
It may sound a little frightening but that may stem from a lack of knowledge, a lack of understanding of what the actual procedure requires of the donor. It involves you needing to be injected with a drug that stimulates stem cell production (in your blood) for a period of four days prior to the donation. The injections can be uncomfortable, much like a tetanus, no more, no less, and then you're tested on day 5 re how many stem cells you're producing.
If you're producing enough cells you're then hooked up to a cell separator machine. Again this may seem a little scary. You have what amounts to a drip inserted in both arms, which are then connected up to the cell separator. As your blood circulates around your body it passes through the machine, which separates the stem cells.
Your blood travels out and through the machine from one arm, and returns through the other. It takes several hours and most people experience tiredness and some tingling around the chest/upper body region. The first few days after the donation you can also feel tired and sore around the site of the injections.
Most people are fully recovered within two weeks of donating. The second method is almost the same as a bone marrow aspiration, which is mentioned above in the testing section. You will have it done under either a local or general anaesthetic, so despite the fact that you will be uncomfortable post-procedure, it's an otherwise pain free experience.
Once again you will be sore around the site of the donation but otherwise you will be completely fine.
Isolation During BMT
Bone Marrow Transplant
The bone marrow transplant is performed under hospital conditions. It's an arduous journey for the recipient. Prior to receiving their transplant they first need to have all their bone marrow destroyed, either through chemotherapy, radiation treatment or a combination of the two.
It's not the nicest of experiences but a necessary one. During the whole time - prepping the patient for the transplant, receiving the transplant plus the initial recovery, which can take around 8 weeks - it all takes place withing the confines of a hospital, almost all of it in isolation.
Once the patient begins the treatment that destroys their bone marrow they're isolated due to the need to keep them in a sterile environment. Having no bone marrow leaves you open to infections, common ones that can and do kill.
For many if not all, this is the hardest part. At a time when you need support, affection, a hug, you're separated from everyone that you know and love. There is a way around it: everyone must take steps to guard against infection and wear sterile clothing etc but contact is still kept to an absolute minimum.
Once the bone marrow has been destroyed the donation can begin, which done by way of a drip transfusion. The new bone marrow is infused into the recipient, and it then naturally distributes around their system.
Over the course of several weeks it builds and grows and hopefully replaces what's been destroyed, only this time it's healthy and free of anything deadly. If the donation is successful, the recipient will eventually get to go home to continue their recovery in more familiar surroundings.
It can take up to a year to feel fully recovered, and that's providing that the bone marrow is not rejected, which can happen in some cases. This is why it's imperative that all those that need a transplant receive the best possible match.
Around 35% of those that do get a match find it comes from a sibling, whilst the rest must seek one via the various bone marrow registers that are located around the world.
Bone Marrow Registers And Websites
- National Marrow Donor Program - Be The Match Marrow Registry
- NHSBT - British Bone Marrow Registry
- Antony Nolan Trust
- Canadian Blood Services
- Gift of Life Bone Marrow Foundation - Home
- South African Bone Marrow Registry
- International bone marrow and cord blood search and donor recruitment center
- New Zealand Bone Marrow Register
- Bone Marrow Donors Worldwide
- New Zealand Bone Marrow Register
- Bone Marrow Donors Worldwide
Become A Bone Marrow Donor - Be The Match
From the research that I have done this last week - there's nothing quite like becoming a bone marrow donor, nothing like finding that you're a match for someone you may never meet. Of all the many stories and personal accounts that I have read, every one said almost the same.
They were scared, worried, unsure, confused, concerned, so many things. When it comes to saving a life, it is a big deal and not a decision that you should or even can take lightly. The thought of hospitals, needles and medical procedures is frightening.
But every single account (and I've read dozens and dozens) all said the same: once they'd donated, once they heard the good news they were elated, pleased, relieved, happy, deeply touched, all the emotions that make life worth living.
I don't know if you've ever considered registering, I don't know if you already are. I wasn't registered before and now I will be. I suppose it takes something terrible to touch your life to make you sit up and realise what others may be going through.
Providing I'm passed I will have my details added to the 15 million or so that are already registered. I doubt I will become a match for Steven as I have a little too much Oriental blood running through me but, if I was, I'd donate in a hot second.
However my name may well come up for someone else and if that becomes the case I'd do the same for them, I'd donate in a hot second. I can see where my family are going to go with this and I don't like the destination. I now realise that many other families are going through the same.
I hope that those who read this don't find it to be anything other than what it is, which is an article relating to the raising of awareness for bone marrow donation. I can't think of a better gift than the gift of life.