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doreen
MemberHi Eve,
I found this on the mds website.
The MDS Foundation cordially invites you to attend MDS Awareness Day
Friday, April 15th, 2005 in New York City
11:30AM — 1:30PMPlease call 1-800-637-0839 for further details.
MemberFrank, I am sorry to hear the news. Neither of my siblings matched either but that is not so unusual. Don’t get discouraged. I will be using cord blood for my transplant as they were unable to find a good matched donor for me. You may want to look into this if they do not find anything for you. I have done much research on it and it appears very promising. Here is a good website for it. http://www.nationalcordbloodprogram.com/
Best of luck to you Frank…MemberHi Lola,
I was diagnosed at the Mayo. They offered me a bone marrow but nothing else but did suggest that I go to the U of Minn. Fairview. I will be doing a cord blood transplant soon there. I am on no medicines or have not had to have any transfusions yet. Please feel free to email me and I will share my phone number so we can talk.
Regards, Doreen
Also I live in Rochester, MN
MemberBill – Best wishes to you. I think you will be fine as I will. This is our chance to move on with life. Where are you having yours done. Mine is scheduled for the week of april 11 but I also have to have a full set of tests to ensure I am healthy enough to go through it.
MemberI am very interested in everyones feedback on this. I am having a transplant done and have never been on any drugs nor had any tx done although I am very close to having to have platelets tranfused. I keep second guessing myself whether or not I should be doing something else rather the transplant. I am 52 years old and was diagnosed last year with MDS. I am scheduled April 11 and I feel I still may back out (mostly because of the fear I have). I have not been given any other options for 2 hospitals.
MemberThank you all for thinking of me. I will have an appt with the Univerity of Minnesota shortly to get a complete physical, bmb and anything else they have to give you before a transplant is done. Once that is all good, we will schedule the transplant if all goes well. I have not had to have any transfusions as of yet or any medicines. I feel very fortunate. I do live in Rochester, home of the Mayo Clinic but they do not offer cord blood and donor that they did find was an 8/10 match. It was a difficult choice what to do but I am hoping because of the match the cord blood will be a better option for me. Thank you all again for your special prayers. All of you are heros in my book, I want you to know.
MemberLisa,
that is an interesting article. I have an abnormal chromosome with the 7th chromosome. Not sure if I understand all of that but I was diagnosed with MDS April of 2004. My mother died of Leukemia in 1979. She was sick for about a year with anemia which finally progressed to Leukemia. Since its at the same hosptial which I was diagnosed, do you think they can give me that information about her chromosomes and wonder if this is something that I should have checked out in my son who is 19? Maybe its something we really do not care to know?MemberHi Pam. I will call the doctor and try to find out. I am doing fine, waiting to make that big decision on when/if I should go through with the transplant. One hospital wants to wait, the other wants to do it now and I am in the middle!I’ll get back with you when I can find out what they used for the bmb.
MemberPam,
I have had only one bmb and they put me all the way under with a new drug that you are up and walking around in about 10 minutes after the bmb. It was amazing. I did not feel a thing and that afternoon I did yard work which included cutting down a 20 foot pine tree!
MemberWhat wonderful news… I have mds and am still waiting for a suitable donor.. I think it is so wonderful for a young person like George H to find it in his heart to be a donor. What a wonderful person. I am also from Rochester, Minnesota.. Small world! Good luck to Billy always!
MemberSara,
I was diagnosed last april. Since then, they have not wanted to put me on anything as they are afraid to ‘rock the boat’ My WBC is about 3.9, Hemoglobin is 12.0 and platlets are at 38,000. That is my biggest concern.. They are continuing to go down. I get monthly blood tests are I am currently waiting to have a BMT done. Thanks for asking!
MemberJimbob, Sorry to interrupt this post but I had a question about one of your comments.. You said your company put you on disability as soon as you were diagnosed… I am curious as to why they did? I am still working full time and am really tired, alot is because of emotional stress. No one has mentioned NOT working at all. Thanks.
MemberAlexa, Thank you so much for your kind words. You added something very special to my day today.
MemberWhat good news that others have used cord blood for transplants and it seem successful. The university of Minnesota uses cord blood for a majority of their transplants. I was referred up there from the Mayo Clinic as they do not perform them.. Not all hospitals do. I will know if a couple of weeks if a match for me is successful… For an adult they usually have to use 2 cord bloods, because of the larger size of the patient. The 2 cord bloods have to match you along with get along with each other. It looks like mine will be coming from Germany…Its very interesting and I want to remain optimistic!
MemberHello Tara… I was diagnosed in april of 2004. I feel pretty good except for worrying and trying to make a decision. What are your blood counts and what have the doctors told you? Do they encourage a BMT. I am on the list for a donor but nothing yet that I have decided on. I currently have low platelets which allows some bruising but other than that feel fine. I too, try and work out about 4 times a week. I force myself to because if the time comes for a bmt, I want to be in top shape… Good luck to you.. I am glad to hear you are feeling great. Keep in shape and keep a positive attitude.
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