Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2007 Report Share Posted February 6, 2007 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. > Quote Link to comment Share on other sites More sharing options...
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