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Being a bone marrow donor

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Nao 06 Jun 2007
I give blood and yesterday when I was doing it, found out that you can have the test for going on the bone marrow register at the same time (although you have to do it at the beginning so it was too late to do it yesterday). I'm thinking of going on it as the blood guy told me that there's a real shortage of ethnic minority donors. You need a really close match for bone marrow donation so there's less hope for ethnic minorities if they need it - there's a low chance of getting a match anyway which is why they usually test close family members first.

I recently completed my first half marathon (http://www.ukclimbing.com/forums/t.php?t=245196) to raise money for the Anthony Nolan Trust. I hadn't thought of that kind of thing very much until my friend told me her brother was waiting for a bone marrow transplant, and basically it's his only hope of survival, which kind of puts it into perspective.

I've been thinking about going on the register for a while but was always put off by the amount of time you'd need off, and the pain factor etc. However the blood guy told me you'd only need a week off and it doesn't hurt as much as it used to (I'm not squeamish about giving blood - I just thought bone marrow would hurt more, but apparently it's all under anaesthetic). And as he said, what's a week off if you save someone's life?

My question is: is anyone on here on the bone marrow register and what's your experience of it? Does it hurt a lot? How do you go about getting time off work (eg do you have to take it as holiday or is it okay to take it as sick leave, given that it's 'elective')? Have you actually ended up donating or have you been on the list a long time?

For those who give blood... Would you consider going on the bone marrow register or is that a step too far?
 Fume Troll 06 Jun 2007
In reply to Nao: I have a gold pin for giving blood, but I wouldn't plan on giving bone marrow. The only reason is that I would worry about getting an infection from the procedure. Unless it was a relative it seems to far for me.

I have a mate who has done it, and my hat is off to anyone that does.

Cheers,

FT.
 rossowen 06 Jun 2007
In reply to Nao:

I gave blood earlier on Monday for my first time.

I'm definately signing up for bone marrow next time. A week off work to save someone's life? Got to be worth it. I'm guessing but I'd say that it'd be under general anesthetic so no worries there as far as pain is concerned...
 climbingpixie 06 Jun 2007
In reply to Nao:

I'm on the bone marrow register but have never had to donate. I thought long and hard about whether I felt I would have the commitment to go through with donating if the need arose but decided it would be worth it as it wouldn't have a long term effect on my health and yet could make a huge difference to someone else, maybe even save their life. Thinking about it like that I felt I couldn't in all conscience not be on the register.
task-o 06 Jun 2007
In reply to Nao:

About three years ago I was diagnosed with Leukemia. Thanks to the people who are willing to put themselves down as bone marrow donors (not to mention the doctors and nurses who cared for me) I had a bone marrow transplant and am now "cured". I have not been given an all clear yet, but it's safe to say that I would not be alive now if people weren't willing to be so selfless. I would urge anybody who is thinking about it to put themselves down on the register, and also say a big thankyou to anybody who already has.

Cheers.
 ebygomm 06 Jun 2007
In reply to Nao:

I've been on the register for about 10 years, but never been required to donate.

Wonder what the probability is that if you are on the register you'll be matched to someone who requires a donation.
Nao 06 Jun 2007
In reply to task-o:

Wow, that's brilliant news!
 idiotproof 06 Jun 2007
In reply to Nao:

already on bone marrow list. have been for 4 yrs, but no one seems to want it ;0( . Can't give blood for the next 6 months though due to visiting asia
Nao 06 Jun 2007
In reply to ebygomm:
> Wonder what the probability is that if you are on the register you'll be matched to someone who requires a donation.

Apparently it is quite low as you need a really exact match. The blood guy said they just take your details (well, a blood sample) when you give blood. (Or you can do it on a separate occasion but I just think I'll do it next time I give blood.) Then they do your profile and whatnot and then if you are matched through the register then you can get called in for further tests if they find someone who they think you might be a match for.

On my side I think the likelihood is slightly different as for one thing they have a severe shortage of ethnic minority donors. I don't know what the different incidences are of leukaemia etc between different races. However I know he said the majority of donors, both blood and bone marrow, are white/caucasian. He said this is the case even in predominantly ethnic areas, out of sync with the local population. Not sure why this is.

I wouldn't be worried about getting an infection from bone marrow donation - for me it was more about the pain factor and the time off work. But when my friend was there crying her eyes out at her little brother being in hospital, I felt like those concerns were pretty selfish.
 control freak 06 Jun 2007
In reply to Nao: Hi, donating has recently become easier and less painful (I can't remember the technical reasons but will look for the article on it and get back to you). It can be painful for some people and there are the usual risks of general anaesthetic etc (not sure if the new method always requires a general now). Depending on the person you can need up to 10 days off work with some back pain but apparently that is worst case scenario. They extract it from your pelvis normally I think. I believe that ANT used to offer to pay for your time off work if necessary but I'm not sure of that is still the case. Some employers will allow you off work as paid sick leave as a humane/charitable gesture I think. ANT will also ask for a donation (not obligatory) when you register in order to cover costs. If you appear to be a partial match in the future you will be asked to send a further blood sample through the post (you get all the bumpf for this to take to your GP). I have done this once but did not match the individual involved.

Without meaning to patronise, it is important to be sure that you (read: one) is prepared to donate before registering as withdrawing later may mean raising someone's hopes unfairly.

The vast majority of those on either the Anthony Nolan Register or the National Bl Service register will never be asked to donate.

After donation you and the recipient remain anonymous. I believe that ANT will allow both to exchange anonymous letters through them once (if) the recipient's body has accepted your marrow successfully. Neither party is obliged to do this and I suspect that most have no contact at all. Donations are not always successful and (personnally) I am not sure that I would want to know.

Being prepared to register could mean that you offer life to one or more people and I don;t think I could not be prepared to do so. Other people feel differently though I do my best not to judge!

Sorry, that was a long post.

 Fume Troll 06 Jun 2007
In reply to Nao: Apparently a lot of donation is now done through extracting bone marrow stem cells from the blood, rather than surgery, so it's probably not as bad as many (inc me) might have thought.

Cheers,

FT.
 control freak 06 Jun 2007
In reply to control freak: I'm not a medic by the way, just have some personal experience with BMT patients.
 control freak 06 Jun 2007
In reply to Fume Troll: That might be what I was on about in my post.
 control freak 06 Jun 2007
In reply to ebygomm:
> (In reply to Nao)

> Wonder what the probability is that if you are on the register you'll be matched to someone who requires a donation.

Neither have I in a decade. I sure it's not a high proportion at all but it's nice to know I'm there if needed!
 climbingpixie 06 Jun 2007
In reply to Fume Troll:

Kind of like the platelet donation machines where your blood cycles through and gets pumped back into you after they take the bits they want out? I wonder if this new procedure would be subject to the same weight restrictions as platelet donation where you have to be at least 9st 3lb for you to do it safely.
 climbingpixie 06 Jun 2007
In reply to climbingpixie:

Or rather for them to let you do it, I'm sure people under the weight limit could donate platelets safely but they have to stay on the safe side.
 control freak 06 Jun 2007
In reply to Nao: Some ethnic groups have high incidences of things like sickle cell anaemia (not medical knowledge so may be wrong) which I think can be treated with a BMT.

I think the reason there are fewer minority ethnic peopel on the register may be partly due to lack of awareness and partly different cultural attitudes to blood/organ donation for some people (and don't read anything silly into this folks, I'm not saying that all BME people have different cultural attitudes to all white people).
Nao 06 Jun 2007
In reply to control freak:
Sickle cell anaemia is mainly a black thing AFAIK. I was talking to the blood guy about it and he said despite this, relatively few black people donate blood.

I don't know about the different cultural attitudes... I suppose if you were a Jehovah's Witness you wouldn't be allowed to donate (or receive) but I don't know about different cultures.
 Stuart S 06 Jun 2007
In reply to Nao:

I've been on the register for about 10 years and haven't been asked to donate.

Didn't actually have to think that hard about going onto the register once I heard about it - if there's a chance you could save someone's life, and the only cost is a little time and discomfort/pain, what sort of person would say no?

Especially, as Fume Troll has said, now that they can usually collect what they need from stem cells in your blood (i.e. it's not much different/worse than giving blood).
AliceW 06 Jun 2007
In reply to Nao:

I've been on the register for a few years and have never been asked to donate either.

I just don't see how you can NOT do it, really - when I know I might be able to save someone's life, how could I decline?
 HC~F 06 Jun 2007
In reply to Nao: Do you have to be a certain weight to donate bone marrow? I have never given blood because each time I've tried they've always told me I'm not heavy enough.

How would I go about joining the register? Should I just turn up for a blood donor session even if they don't want my blood?
AliceW 06 Jun 2007
In reply to HC~F:
> (In reply to Nao) Do you have to be a certain weight to donate bone marrow? I have never given blood because each time I've tried they've always told me I'm not heavy enough.
>
> How would I go about joining the register? Should I just turn up for a blood donor session even if they don't want my blood?


I don't actually know.
How much below the weight limit are you? If you are only slightly below then they sometimes let you donate anyway.
And they don't check - I'm around the limit, sometimes a bit under, and they never ask! I think they do if you are a first time donor though - but doubt they would weigh you.
 elsiem 06 Jun 2007
In reply to Nao: i was on for a few years (roughly) donated last year. was via peripheral donation. no pain really as same as giving blood effectively. was busy at work so couldnt take time off other than an hour or two for the numerous tests prior and then the day itself. not sure who/what/why i gave it but i know i help someone and thats more than enough. i was back at work the next day, stayed off the physical activity for a few days and then was back to normal life/play/work/running...i hope that others are reassured by how little it affected me in a negative way and how much it affected the recipient in a positive way.
 alicia 06 Jun 2007
In reply to Nao:

I've been on the register for about three years but have never been asked to donate. I'm sure that it would be painful to donate but I really can't imagine anyone saying 'no' if asked!
 ebygomm 06 Jun 2007
In reply to HC~F:

The weight limit applies to the bone marrow register too

http://web17110.vs.netbenefit.co.uk//index.php?location=3.1.1.1
 HC~F 06 Jun 2007
In reply to AliceW:
Not sure what the weight limit is at the moment. When they asked my weight and I told them (adding a bit on) they weighed me to check each time. I wasn't that far off on one occasion, so I offered to go and eat lots of pies for lunch and come back but they said no . I've tried at least 3 times (not at the same place), and each time I've been weighed and turned away.
 elsiem 06 Jun 2007
In reply to HC~F: I think its 50kg minimum weight
 elsiem 06 Jun 2007
In reply to elsiem: or 51kg in the case of bone marrow....
 ebygomm 06 Jun 2007
In reply to elsiem:

just found out I can't be on the register anymore, now how do I go about being taken off?

 HC~F 06 Jun 2007
In reply to ebygomm: Ah. Not sure how much I weigh at the moment but I'd be borderline. As long as I sign up to the register on a 'heavy' day, I'd just have to make sure I put on weight somehow should I be called in!
 alicia 06 Jun 2007
In reply to ebygomm:
> (In reply to HC~R)
>
> The weight limit applies to the bone marrow register too
>
> http://web17110.vs.netbenefit.co.uk//index.php?location=3.1.1.1

Huh! It must be a different weight limit in the US, because they let me on here but I wouldn't make it in the UK.
AliceW 06 Jun 2007
In reply to elsiem:

Yes, that's odd.

I thought it was 50kg for giving blood. For it to be 51 kg for bone marrow seems a strange difference!

But I think it used to be 8 stone, which is about 51kg..... presumably when they moved to metric they wanted a round number so decreased it slightly.
AliceW 06 Jun 2007
In reply to HC~F:
> (In reply to AliceW)
> Not sure what the weight limit is at the moment. When they asked my weight and I told them (adding a bit on) they weighed me to check each time. I wasn't that far off on one occasion, so I offered to go and eat lots of pies for lunch and come back but they said no . I've tried at least 3 times (not at the same place), and each time I've been weighed and turned away.

Just say you weigh 8 stone!



Must be only for new donors - I've never even been asked what I weighed.
 elsiem 06 Jun 2007
In reply to AliceW: I only said the 51kg for bone marrow as someone else posted the link while I was typing 50kg I could easily be wrong but 50kg stuck in my mind for some reason.
 HC~F 06 Jun 2007
In reply to AliceW: I told them I was just under 8.5 stone. They looked at me and didn't believe me.
 ebygomm 06 Jun 2007
In reply to alicia:

> Huh! It must be a different weight limit in the US, because they let me on here but I wouldn't make it in the UK.

No minimum weight in the US

AliceW 06 Jun 2007
In reply to elsiem:
> (In reply to AliceW) I only said the 51kg for bone marrow as someone else posted the link while I was typing 50kg I could easily be wrong but 50kg stuck in my mind for some reason.

No I realise - I looked at the link.

 alicia 06 Jun 2007
In reply to ebygomm:
> (In reply to alicia)
>
> [...]
>
> No minimum weight in the US

Ah, thanks. But that kind of brings up the issue of whether or not a minimum weight is necessary, then, since the US program doesn't seem to have killed anyone yet...
AliceW 06 Jun 2007
In reply to HC~F:
> (In reply to AliceW) I told them I was just under 8.5 stone. They looked at me and didn't believe me.

??? Maybe you should overestimate a bit less.......



I'm about 50kg and no one has ever asked - perhaps as I'm a regular donor they just assume it's OK? Or perhaps I look heavier than I am?!?
AliceW 06 Jun 2007
In reply to alicia:
> (In reply to ebygomm)
> [...]
>
> Ah, thanks. But that kind of brings up the issue of whether or not a minimum weight is necessary, then, since the US program doesn't seem to have killed anyone yet...

How much blood do they take?

As I understand it, they COULD use smaller donors if they took less blood...... but the administrative (and other) hassle this would cause is not cost effective when the weight limit only excludes a small proportion of donors anyway.

Perhaps this is less of an issue in the US and they vary the volume of blood they take according to weight?
 HC~F 06 Jun 2007
In reply to alicia: I don't see why it's necessary to have such a strict weight limit. I'm not unhealthy, but because I'm not very good at sitting down doing nothing, I burn off everything I eat and don't tend to carry much fat. I don't see why sitting around doing nothing but eating high fat food and being a couple of kg heavier would make me a safer donor.
AliceW 06 Jun 2007
In reply to ebygomm:
> (In reply to alicia)
>
> [...]
>
> No minimum weight in the US

PS not true - at least according to the red cross, you have to be at least 110 lb
AliceW 06 Jun 2007
In reply to HC~F:
> (In reply to alicia) I don't see why it's necessary to have such a strict weight limit. I'm not unhealthy, but because I'm not very good at sitting down doing nothing, I burn off everything I eat and don't tend to carry much fat. I don't see why sitting around doing nothing but eating high fat food and being a couple of kg heavier would make me a safer donor.

It's because blood volume is proportional to body weight - so if you are light, they are taking a higher proportion of the total amount of blood that you have.
 alicia 06 Jun 2007
In reply to AliceW:
> (In reply to ebygomm)
> [...]
>
> PS not true - at least according to the red cross, you have to be at least 110 lb

Is that for blood donation or bone marrow donation? For getting on the bone marrow register, no-one ever asked me how much I weighed...
 alicia 06 Jun 2007
In reply to AliceW:

Or actually, thinking about it, maybe they would only consider your weight if you were actually at the point of donating bone marrow, not just joining the register.
AliceW 06 Jun 2007
In reply to alicia:
> (In reply to AliceW)
>
> Or actually, thinking about it, maybe they would only consider your weight if you were actually at the point of donating bone marrow, not just joining the register.

It was blood donation that I looked up.
AliceW 06 Jun 2007
 alicia 06 Jun 2007
In reply to AliceW:

The rest of that link's section on weight made me smile:

"There is no upper weight limit as long as your weight is not higher than the weight limit of the donor bed/lounge you are using. You can discuss any upper weight limitations of beds and lounges with your local health historian. "
 ebygomm 06 Jun 2007
In reply to AliceW:

>
> PS not true - at least according to the red cross, you have to be at least 110 lb

We were talking about being on the bone marrow register not blood donation

 DancingOnRock 06 Jun 2007
In reply to elsiem:
> (In reply to Nao) i was on for a few years (roughly) donated last year. was via peripheral donation. no pain really as same as giving blood effectively. was busy at work so couldnt take time off other than an hour or two for the numerous tests prior and then the day itself. not sure who/what/why i gave it but i know i help someone and thats more than enough. i was back at work the next day, stayed off the physical activity for a few days and then was back to normal life/play/work/running...i hope that others are reassured by how little it affected me in a negative way and how much it affected the recipient in a positive way.

I donated for myself. They froze them and then I had chemo and recieved my own stem cells back. Its like an advanced blood transfusion. They give you special drugs a few days before to make you bone marrow go into overdrive and produce extra stem cells. Your blood goes into a machine and it strips the stem cells out and then the blood goes back into your body. Stem cells are effectively immature white blood cells. When transplanted back in they find their way back into your pelvis and thigh bones and become bone marrow. At least I think thats how it works.

AliceW 07 Jun 2007
In reply to ebygomm:
> (In reply to AliceW)
>
> [...]
>
> We were talking about being on the bone marrow register not blood donation

No, I was (partly) responding to Helen's query about blood donation. Several other people on the thread have talked about both too.
 idiotproof 08 Jun 2007
In reply to Nao:

Eddie the eagle edwards has been a bone marrow donor for his sister this week
 omerta 08 Jun 2007
In reply to Nao:

I'm on the Anthony Nolan list of donors but have never been called....I also give blood, too
sloth 08 Jun 2007
In reply to Nao: Do you have to be 18 to give blood? i really feel strongly about doing it, but probably to young.

and when can i get a donor card?

jake
 Conf#2 08 Jun 2007
In reply to sloth:

You can get an organ doner card at any age i think. At least i hope so as i sent off my form yesterday and Im 16.
AliceW 09 Jun 2007
In reply to TimR:

Yes - I was quite upset about this! I donated on my 18th birthday, which at the time was the youngest you could donate..... then they went and lowered the age!

larrylong 16 Jun 2007
In reply to Nao: in answer to your question i am on the register. this involved nothing more than a small amount of blood being taken in the usual way. following this you will be informed of your number on the register. nothing else is required other than an annual letter to confirm your details are still the same or whether they need updating. I registered in December 2001. In May of this year i received a letter informing me I am a potential match. A medical form which I had to complete and further blood tests - no different from the initial blood test - just slightly more blood taken is all thats necessary at this point.
I hope this helps you come to a decision. for me knowing I could be a match has confirmed to me the importance of being on the register. Your blood guy is right whats a week of discomfort for the gain of possibly a healthy life for someone.
I have informed my employer and so far they are incredibly supportive. Finally, if I was sick and someone could give me something that could save my life or at least improve it I would want it desperately.

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