This is a Journal entry by Pimms

Bone vampires

Post 1

Pimms

For a few years I've been on the Anthony Nolan Trust register for potential bone marrow donation. I give blood regularly, the register seemed like a harmless additional tick in the altruism box smiley - angel - I didn't expect there to be a match.

Last week however I heard from ANT asking for me to confirm I was still content to stay on the register and go forward to a next stage, as there was a second stage match with the blood sample I gave when I registered smiley - yikes

Yesterday I received a jiffy bag with bulky mailing cores, sample tubes, forms to complete, a 15-page information leaflet and a disposable needle. I immediately scanned the letter, booked an appointment with my doctor's surgery to get the samples collected and then read the information leaflet closely and filled out the Medical Update form.

The Information leaflet is pretty comprehensive in saying what the next stages would be if I prove to be the match they need once they have worked with these second stage samples. At this point they say it is about 25% likelihood that I'll be the match they require - so three out of four chance it may go no further this time smiley - winkeye

My wife was concerned when I read out the following line from the leaflet:
"Theoretical risks [...] include rare [...] reactions including death." smiley - laugh This was about general anaesthesia while they stick a big needle in the hips to extract the bone marrow. I've had GA before (for a hernia op) so I'm not too worried about my ability to survive it.

While there is the alternative process of several daily injections to boost numbers of stem cells in the bloodstream, which can be filtered off in a couple of lengthy bloood donations, I currently prefer the needles in hips under GA drawing a litre of fluid off, then a week off work smiley - smiley

See A789618 for entry on the person who set up ANT, or A197192 for a personal view of someone who has actually donated bone marrow.

I'll let you know what happens - but usually it takes a couple of months after getting the second stage samples back before they can decide whether a potential donor is a match (they have to do various tests on the blood of donor and patient which can take a good deal of time to get a definite compatibility result)


Bone vampires

Post 2

frenchbean

Good for you, Pimms.

A few years ago I thought I'd put my name forward too. However, once I read all the bumph and spoke to somebody who'd donated bone marrow, I changed my mind I have a phobia about general anaesthetics amongst other things.

So I am full of admiration for those of you who commit to this kind of thing. And it really is a commitment.

The best I can do is donate my entire body to science when I no longer have a use for it.


Bone vampires

Post 3

Hypatia

It must have been a surprise to learn you're a possible match. Congratulations on going through with it. Helping to save someone's life will be very rewarding. smiley - hugsmiley - applause

I've had GA several times and have never had a problem. The vast majority of people don't. I hope Mrs. P doesn't worry too much, but I can understand why she is concerned.


Bone vampires

Post 4

Gnomon - time to move on

Death is a rare side-effect of just living, so I wouldn't worry about that too much.


Bone vampires

Post 5

David B - Singing Librarian Owl

Good for you.

My medical history doesn't allow me to be on the register, but I can imagine how important a decision it is.


Bone vampires

Post 6

websailor

PL,

You are a real hero. It takes a lot of courage to do something like that, but helping someone have a healthy life would be a huge reward. And it could be any one of us in need.

GA is so much better these days than it used to be, either that or the administering of it is better. I wouldn't have thought there was more risk than average. In the current climate walking down the road or going shopping is probably more risky.

smiley - goodluck and do keep us informed.

Websailorsmiley - dragon


Bone vampires

Post 7

Pimms

Hey I'm just a guy, you know smiley - winkeye

Thanks for all the appreciation. I might need it if it goes as far as the harvest, but don't really deeserve it yet. The odds are against getting there. The altruism in simply going on the register is on a similar level to carrying a donor card - you don't expect a knock on the door.
I'm reminded of the Donor skecth in Monty Pythons Meaning of Life, when the surgeons turn up to collect the organs before the donor has quite finished with them.

While death is a recognised side-effect of living it doesn't enhance one's chances of long life to deliberately put oneself forward unnecessarily into situations with greater potential for meeting the grim reaper. While extreme sports might be inadvisable for those attempting immortality I think this can be justified. The risks are low, the reward - saving a life - definitely worthwhile. I feel good about it smiley - smiley


Bone vampires

Post 8

Lady Chattingly

smiley - applause, Pimms. Well done.


Bone vampires

Post 9

frenchbean

Yeah, right, Pimms smiley - laughsmiley - laugh I think it's a brave thing you're doing smiley - applause (for this woossie girl anyhow). Leaving bits of my body when I'd dead holds no fear for me at all... after all I won't be around to feel any pain or discomfort smiley - winkeye

Lady C smiley - hug Nice to see you around. Have you been away?


Bone vampires

Post 10

Lady Chattingly

Haven't been away, just "observing".

I think I might be able to do the bone marrow thing for a family member, but I'm a big wuss when it comes to needles. Not smiley - brave


Bone vampires

Post 11

Pimms

Update: received a letter yesterday from ANT Apparently I am a 95% match to the patient. I don't know how this compares to the 25% probability of being needed for bone marrow harvest that I was told when informed I was a second stage match smiley - erm

If I haven't heard anything in the next two months it won't happen. It depends whether they find a 100% match. I may be asked for another blood sample or be asked to go directly to bone marrow harvest (do not pass Go, do not collect £200smiley - winkeye)


Bone vampires

Post 12

Lady Chattingly

Keep us posted, Pimms. I think it's a very selfless thing you are doing..........smiley - hug


Bone vampires

Post 13

Pimms

Note: in first post I gave two links the first one should have been to A842924 the edited version of the entry about Shirley Nolan. I suppose it is worthwhile to give the ANT website link too: http://www.anthonynolan.org.uk/

I had a smiley - footinmouth problem emailing them as I neglected to copy their email address correctly - ending it .co.uk rather than .org.uk smiley - doh It took me ages to realise why the email kept bouncing back undelivered.

I must again decline the praise smiley - grovel for being selfless smiley - zen. So far all I've had to do is fill in a few forms and give a couple of blood samples, and if it *does* go ahead I expect to be selfishly basking in all the kudos it engenders. I shall become heavily tanned with respect smiley - cool which I shall show off wherever I go (with my cushion), until the tan fades smiley - biggrin


Bone vampires

Post 14

Hypatia

A 95% match seems to put you awfully close. Is anyone ever a 100% match without being a twin?


Bone vampires

Post 15

Pimms

I've tried to read up on ANT website, but only had partial successin finding answers. Only 30% of patients requiring a donor find a compatible one from their immediate relatives, so 70% need to find an "unrelated" donor.

The tissue type, like blood type is inherited, but a little more complex to match than simple A, B, AB and O. Nevertheless in a big enough population you'll be able to find unrelated people who match you. You are more likely to match people with a similar ethnic background (I suppose you'd be *really* distantly related), and they prefer to use male donors, though it isn't made clear why.

There is some latitude in matching, as ostensibly close matches may or may not cause serious incompatibility reactions - some things they can measure and assign a type to, others they just have to test and see. that is why the typing can take weeks and weeks.


Bone vampires

Post 16

Pimms

For reference of others who may end up in the same situation as me, while you are a potential second stage match waiting the two months for confirmation, it is advised that you don't give blood.

I figure a sizable proportion of people on the bone marrow registers are also blood donors (it seemed a natural step from one to other to me).

Last week I got my regular letter requesting a blood donation to local blood transfusion service and letting me know the time of the next session. Querying with ANT I was told it was advisable not to donate at this time. No point in jeopardising potential bone marrow donation. My hat is clearly still in the ring...


Bone vampires

Post 17

Hypatia

The wait to find out for sure must be frustrating. smiley - hug


Bone vampires

Post 18

Pimms

Well. I have heard nothing. Two months up today from last letter. This should mean I won't be called for whoever was the fairly close match needing bone marrow stem cells.

I *told* you there wasn't much justifiable kudos to be extracted just by going on the register and donating a few blood samples. But hey, maybe it'll happen again - it could be me next time! smiley - ok


Bone vampires

Post 19

Hypatia


The point is you would have donated if called upon. So just registering and going through the process is kudosworthy. The intention is on an almost equal footing with the reality, imho, with many things in life - not always - certainly on this occassion.


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