RE: Finding a compatible donor for potential transplantation

[Guest guest]

I was diagnosed with CML just over a year ago and it has been a longstanding

issue of finding a transplantation donor. I have absolutely no intention of

going down that avenue unless I had to but would like the reassurance of

knowing that I do have a compatible donor out there somewhere!

My brother who lives abroad has messed me around for the past 8 months about

taking the blood test to see if we are compatible and I am still no further

forward to finding a donor, if I should ever need one!

I live in Geelong, near Melbourne, Australia. My husband has repeatedly

tried to get a blood test to see if he is compatible, to be told that he has

to register to help others as well. He doesn't want to do this but wants to

help me and is not able to. He is not even able to physically pay privately

for a blood test to see if he is compatible.

My ex-husband who also volunteered to be tested has been told that he does

not qualify to be a blood donor in this country. He is an Australian

Citizen and moved here from UK in 1999.

My oncologist told me that there is 'no point' in my daughter being tested

as the statistics say that there's a 99% probability that she won't be

compatible.

Blow to statistics! MY point of the matter is that the system sucks! How

on EARTH can I obtain a donor match if the system won't let anyone be tested

for compatibility??? Can someone please explain my dilemma?

Jackie Petropoulos,

Geelong, Australia

[Guest guest]

I find your attitude interesting. Our son has leukemia and my husband and I both

went on the transplant donor program. I wish they would contact me to donate to

someone as I would love to be able to give someone the chance of life. To see

that you expect to find a donor when those in your circle of friends and family

are unwilling to help others is sad. One should be willing to give help as much

as they think someone else should give to them. I hope you find the help you are

seeking but if a little blood can save a life why are those close to you not

willing to help? Perhaps you should encourage them to change their attitudes

and when the time comes someone will have the attitude to help you. Best of

Luck, CML mom, and blood donor.

[Guest guest]

Hi Jackie,

We have also asked our family and friends to be put on the

international registry for bone marrow as well as blood or plasma or

anything else as it can help so much. My husband does not have a

related match and similar to you- we are thinking of BMT as last

resort...

The match cannot be tested exclusively for you as it is much easier

and benficial to test your husband and ex against needed marrow on the

international registry. I also was put on the registry- not high

chances to match my husband - but if I can match anyone else and help

- that would be an amazing gift..I think this is something for your

family to consider..Why is your husband against being put on the

international registry? If he is a match - it is quite a simple

procedure for the donor..

Yes- your children are not usually matches for marrow - for other

things yes- but not marrow..I would ask friends and family to be put

on the international registry as there are many folks out there who

would also love to have a match..

The system is actually quite good- you are crossed matched against

those on the international registry- its that simple. If you don't

have a match - ask those who you know to sign up on the registry. Then

this populates the registry...

hope this explains some!

Shalyn

[Guest guest]

At 02:31 PM 1/31/07 +1100, you wrote:

>I live in Geelong, near Melbourne, Australia. My husband has repeatedly

>tried to get a blood test to see if he is compatible, to be told that he has

>to register to help others as well. He doesn't want to do this but wants to

>help me and is not able to. He is not even able to physically pay privately

>for a blood test to see if he is compatible.

Hi Jackie,

In the US, family members can be tested for compatibility and there is no

requirement that they be put on the donor registry, but many would choose

to do so.

The chance of your husband being a match for you is something like 1 in

20,000 (at best).........it is not likely. Sometimes if you have the same

ancestry and have very common HLA type, then you might match. Your daughter

is not likely match either.....she would most likely be a 1/2 match (she

got have of her chromosomes from her Dad)....and this is not a good enough

match for a transplant (unless you are in a desperate circumstance).

Your sibs have the same 2 parents so with them there is a 1 in 4 chance of

a complete match....so still only 25%.....and many of us have multiple

siblings and no match.

Hope this helps your understanding. Many people who might need a transplant

down the road do bone marrow donor drives to increase the number of people

on the registry.

C.

[Guest guest]

Well, I must say that this is not the first time that I have heard of

people wanting only to get tested for the person they know that has

CML and not wanting to be on the international registry to help

others. This happened in several instances to me when I was first

diagnosed. I had no shortage of people willing to get tested for me,

but who didn't want to do it for others, ie) my sister in law who

very clearly said she would get tested, but when she found out that

it wasn't just me she would be volunteering to help, she said no. I

find that very sad. People want someone they don't know to help them

when they are in this situation, but they don't want to help someone

else at the same time. I just don't understand that mentality. My

husband and also my best girl friend(who by the way was on the

registry long before I was diagnosed just because she wanted to be

able to help someone else)have said more than once that they hope

they get that phone call one day that they are a match for someone in

need. It makes me sad to think that I can't be a donor if one of my

kids were to get this, or if they need a kidney or whatever. That

sucks. By the way-about the sibling statistics--I have 3 siblings,

all older-they all matched each other perfectly, but not me at all-go

figure! Being on the international registry is something I would

encourage everyone to do-whether or not they have been touched in

some way with this disease or any other.

susanne

> >I live in Geelong, near Melbourne, Australia. My husband has

repeatedly

> >tried to get a blood test to see if he is compatible, to be told

that he has

> >to register to help others as well. He doesn't want to do this but

wants to

> >help me and is not able to. He is not even able to physically pay

privately

> >for a blood test to see if he is compatible.

>

>

> Hi Jackie,

>

> In the US, family members can be tested for compatibility and there

is no

> requirement that they be put on the donor registry, but many would

choose

> to do so.

>

> The chance of your husband being a match for you is something like

1 in

> 20,000 (at best).........it is not likely. Sometimes if you have

the same

> ancestry and have very common HLA type, then you might match. Your

daughter

> is not likely match either.....she would most likely be a 1/2 match

(she

> got have of her chromosomes from her Dad)....and this is not a good

enough

> match for a transplant (unless you are in a desperate circumstance).

>

> Your sibs have the same 2 parents so with them there is a 1 in 4

chance of

> a complete match....so still only 25%.....and many of us have

multiple

> siblings and no match.

>

> Hope this helps your understanding. Many people who might need a

transplant

> down the road do bone marrow donor drives to increase the number of

people

> on the registry.

>

> C.

>