Bone Marrow Donation Registry

[Mokey]

I am planning on joining the Bone Marrow Donation Registry. I have been studying a lot on leukaemias lately. I keep thinking how horrible it would be for a loved one (or myself for that matter) to need a bone marrow transplant and not have anyone that was a suitable match. It would be such an incredibly frustrating situation, given that if you were to walk through a crowded place you would potentially be walking past people who could save your loved one's life.

I have been doing my research, http://www.abmdr.org.au for anyone that's interested, and only about 1 in 1000 people that register end up donating per year. Apparently 70% of people in need of a transplant don't have a matching relative and rely on the bone marrow registry. The thought that I could be the difference between whether someone lives or dies is very compelling.

So, while I've already decided to register, I'd be interested to hear if anyone has had any personal experience in bone marrow transplants. Anybody here made a donation or received one, or had a friend or relative do so?

 

[Nalima]

Last month my son had a bone marrow transplant in St Vincent hospital. The donor is my daughter. It has been a long journey for us as a family. It started last year when my son was diagnosed as having leukaemia. He has 5 cycles of chemotheraphy and get into remission in the fourth cycles of chemo. Unfortunately after approximately four months the leukaemia relapsed and the doctor decide to do the bone marrow transplant. We are blessed that one of my daughter is perfect match to be a donor for my son. My son is now recuperating which may takes 6 to 12 months.

I myself like to be placed in registry but I was told by the doctor that I am too old to be a donor, but instead she suggested to be a blood donor. While in the hospital we knew some patients who are still waiting for the right donor and a patient that we knew have a donor from Germany.

 

[AlmostBob]

Am a marrow donor,
in two countries
havent had a match yet,
blood donor
you do cytopherisis and you see the person on the other side of the machine, on tthe other side of the plastic bubble wall, and they thank you, when they look like absolute **expletive deleted**, because you match 'close enough' (alive is close enough) till a marrow donor match can be found.

giving blood would be a better rite of passage to adulthood, than going to the pub and getting stinking, because you're old enough.
just don't know how to influence young people to do it
drink, drive, die
dont drink, donate, save a life​

eldest sone, has been, got the letter with the first donation, "your blood has helped 3 people"

 

[csc]

ive been a blood donor for years....but aparently id be not good donating a heart as the cook says i dont have one!

whats involved in being a bone marrow donor?

can it been done at regional hospitals do you know or only in capital cities??

do they do it while your awake or not?

ive heard its fairly painful but not sure if thats just general gossip.

id give it a go actually once i knew more detail.....

 

[Deena]

I am not sure of the precise details, but know my girlfriends husband donated bone marrow successfully to another Australian woman many years ago. She is still alive and well, the two familys have kept in contact over the years. Nice story to hear of good outcomes.

 

[Mokey]

I am not sure of the precise details, but know my girlfriends husband donated bone marrow successfully to another Australian woman many years ago. She is still alive and well, the two familys have kept in contact over the years. Nice story to hear of good outcomes.

That's great to hear, good on him! They seem to be quite successful the vast majority of the time.

 

[Mokey]

Last month my son had a bone marrow transplant in St Vincent hospital. The donor is my daughter. It has been a long journey for us as a family. It started last year when my son was diagnosed as having leukaemia. He has 5 cycles of chemotheraphy and get into remission in the fourth cycles of chemo. Unfortunately after approximately four months the leukaemia relapsed and the doctor decide to do the bone marrow transplant. We are blessed that one of my daughter is perfect match to be a donor for my son. My son is now recuperating which may takes 6 to 12 months.

I myself like to be placed in registry but I was told by the doctor that I am too old to be a donor, but instead she suggested to be a blood donor. While in the hospital we knew some patients who are still waiting for the right donor and a patient that we knew have a donor from Germany.

I'm so sorry to hear your son is sick Nalima, it must be very difficult for you and your family. I had bone cancer when I was 18 and for me personally, I think it was harder for the people around me than it was for me. It's good to hear your daughter was a match. I hope he makes a full recovery ASAP. Yes, it must be so hard for the people who are just getting sicker and sicker while hoping that a donor becomes available to them.

 

[Mokey]

ive been a blood donor for years....but aparently id be not good donating a heart as the cook says i dont have one!

whats involved in being a bone marrow donor?

can it been done at regional hospitals do you know or only in capital cities??

do they do it while your awake or not?

ive heard its fairly painful but not sure if thats just general gossip.

id give it a go actually once i knew more detail.....

Good on you csc, and many of your posts have shown that you definitely have a heart. You have to be between 18 and 40 to initially register but you can be kept on the register up until you are 60. You are not bound when you put your name on the register and you can withdraw at any time. When you first sign up, they take some blood to screen and test for your tissue type. That's pretty much it unless you are actually needed.

If you are the 1 in 1000 that is actually needed each year, you will usually be given about a month's notice and have a counselling session beforehand. The donation can be done in one of two ways. One is the traditional bone marrow transplant, where marrow is taken from the back of the pelvis. It is done under a general anaesthetic (unlike a bone marrow biopsy), and may or may not need a stay overnight in hospital either before or after. It has a quicker recovery than I originally thought. The average person is sore and a bit stiff for 2-3 days after and Panadol is usually all that's needed for pain relief, so it's not as painful as I would have anticipated. Most people are back to their normal lifestyle and duties after these first few days.

The other way of donating I hadn't heard of previously, peripheral blood stem cell donation. You are given an injection to stimulate growth of stem cells in your blood and 4 days later, you donate the cells in a similar way to a blood donation, except that it takes longer as they are filtering the stem cells out of your blood during that time and returning your blood to you.

I'm not sure whether donations can only be made at larger hospitals or not. But they do pay all of your expenses involved in the donation, ie. medical costs, as well as travel, accommodation, etc. if needed. As they say, the only thing you have to contribute is your time. It's definitely a worthwhile thing to do, especially when there are people such as the ones that Nalima mentioned earlier, that are just waiting and hoping that a donor will become available. I put the link to the Aust. Bone Marrow Registry website in my initial post, if anyone wants to know more or is interested in signing up.

 

[Perp]

I think registering to be a bone marrow donor is a really wonderful - and pretty easy and low-risk! - thing to do as a contribution to the community.

May I suggest that everybody also consider registering to donate that which we need even less - our organs after we've died. You can register that you wish (or don't wish, if you have religious or other reasons for objecting) to be an organ donor after death at the Australian Organ Donor Registry.

With the organ donor register, please also inform your family of your wishes, because if you want to be a donor but they object, it can prevent the donation taking place, even if you've registered your consent with the AODR. At the very least, it may delay the process whilst court hearings take place, and jeopardise the usefulness of the organ.

Imagine if your child was ill, and needed, for instance, a liver transplant to stay alive. How annoyed would you be, knowing that people are being buried with compatible livers, that rot in the ground, when the chances are that the person who owned the liver would probably have been perfectly happy for that liver to be used? This is what happens with the vast majority of Australians who don't make their wishes known, leaving their families wondering whether they should donate or not, and most of the time take the "safe" option of not donating. Unfortunately, you can't yell out from the next world saying "PLEASE donate my liver; I don't need it anymore and I don't mind!" So register your wishes with the AODR now to make it that much easier for your family, and increase the chance of your organs saving somebody else's life (or enhancing their quality of life).

You can specify which organs you are willing to donate, if you're willing to donate a heart, but not a cornea, for example.

Most deaths render the organs unsuitable for donation, but that's even more reason to be registered; we can't afford for any of the few potential donors to have their organs not be used. Australia has one of the lowest organ donation rates in the western world.

Mokey, I'm so glad to hear your story has a happy ending, and Nalima, your family will definitely be in my prayers tonight.

 

[Mokey]

Thanks ozperp, and you make a really good point about the organ donation. A lot of people have no problem with donating but don't actually get around to doing anything about making it official. In Australia, people have to specifically opt to donate their organs and the default option for deceased people who haven't specified their preference on organ donation means that no donation takes place. In some European countries, the opposite is true. People are treated as organ donors unless they specifically request otherwise, and these countries have nowhere near the shortage of organs that Australia does.

 

[Cherry Pro]

Mokey ..this is such a thought provoking thread since bone marrow donation is not something I have even remotely considered.

Some years ago I donated blood, I'd been a regular donor previously and my blood group O -ve is rare. But on this occassion, I fainted on the road as I walked back to office which was only a few buildings away. Anyway, some passerbys got me up and I was revived, hubby was called to take me home.

The GP then checked me out, gave me 2 days leave and advised me not to donate again. Now it's been a few years and maybe I should go back to check myself and donate again.

I was so inspired watching Dr Chris O'Brien's funeral last week as he donated both his corneas, imagine two people being blessed with the gift of sight.

Nalima ...pray that your son has a speedy recovery.

 

[Nalima]

Good to hear you recover well Mokey, we will also like to pray for your continuing good health. Thanks Ozperp for your thought and prayer, very much appreciated.

csc, to be a donor initially you will be given an injection to stimulate the growth of your white blood cell for four days. Then you will stay in the hospital for approximately 5 hours. They take your blood through central line and connect it to a machine. The machine extract stem cell, plasma, etc and pump the blood back to the your body. The process take about 4 to 5 hours. So it is not painful at all. This is how they take the stem cell from my daughter.

 

[travelbug]

Thanks for posting this informative thread.

I think a lot of people simply don't think about donating until it hits them personally, which is sad.

My whole family are blood donors and have filled out for organ donation.

We have a new baby in our family that is lucky to be alive. Doctors said he'd only live a few hours (before he was born).
He needs a kidney transplant but has to wait until he's big enough.

That really hits home. Family is being tested now.

Put organ donation on your license NOW. Tell your family your wishes.

 

[ani]

I have been on the register for many years but no call as yet!

My licence donates all my organs, though I'm sure there is some they'd pass on.

It started for me when i had a fairly routine back op and needed copious amounts of blood. I thought how can I repay that.

I did give blood until they decided that anyone that had been in the UK during mad cows couldn't donate anymore

To those having or needing a transplant, my best wishes are with you.

 

[csc]

Only up to 40 years old???

I miss out then...ill still make some enquiries though locally.

my blood type etc is as common as mud so maybe my marrow may work with someone easily......no idea on that issue but ill soon find out..

thanks for the info to date..

 

[Perp]

My licence donates all my organs

You raise another good point that I forgot to mention! Since the introduction of the AODR as "the" central registry of intentions regarding organ donation in Australia, and given that the AODR has a lot more information and rigorous consent procedures, the info on your drivers' licence no longer has any standing. It may still be useful for indicating to your family that you wanted to be a donor, but it's definitely not a substitute for being on the AODR.

In summary - to be crystal clear - even if it's on your drivers' licence, you should still register on the AODR.

 

[csc]

You raise another good point that I forgot to mention! Since the introduction of the AODR as "the" central registry of intentions regarding organ donation in Australia, and given that the AODR has a lot more information and rigorous consent procedures, the info on your drivers' licence no longer has any standing. It may still be useful for indicating to your family that you wanted to be a donor, but it's definitely not a substitute for being on the AODR.

In summary - to be crystal clear - even if it's on your drivers' licence, you should still register on the AODR.

i think you will find that having a licence with a donor registery will mean little.....i know of several cases where a family have challenged this issue and won a stay on it pretty quickly through the courts while the person was on life support but brain dead...

it can be pretty deep with legal issues should a member of your family reject it no matter that it was on your drivers licence...sad but true...

people do not think rational at times when death is imminent...going with that persons wishes for some will mean little...