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Old Wed Aug 25, 2010, 07:52 PM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
Hope,

Your name says a lot. Your positive attitude will do a lot to help you in the weeks ahead. You and your husband have other things going for you too. First of all, congratulations on finding a donor. Second, younger people tend to do well with transplants. Most MDS and AML patients are in their 60s or older and more likely to have accumulated other health problems that complicate their treatment. A 32-year-old is more likely to be able to tolerate the treatment and recover faster.

I hope you are at an excellent treatment center and that it's close to home. Having family around (even if they don't fully understand AML or transplants) will be another advantage.

It's not surprising that your friends and family have a hard time understanding what you and your husband are going through. It's difficult enough to make sense of it for patients, let alone the other people in their lives. I've found that it helps to write down what's happened each day -- in email, a journal, a blog, or in a forum like this one. That lets you keep track yourself and also lets your "support team" keep up with news and learn to be supportive at their own pace. Sometimes people are so afraid of saying the wrong thing to a sick friend that they don't say anything at all. But they can listen, and from that learn how best to be understanding and really help you.

For what it's worth, we in this forum know what you are going through: the symptoms of the disease, the shock of diagnosis, the waiting and the tests, the medical jargon thrown at us, the effects of chemo, the "why me?" feeling, the fear of the unknown future, and the hope for a cure and a return to your normal lives.

AML is a life-threatening disease and we can't pretend otherwise, but doctors have learned a lot more about how best to care for patients undergoing transplants since the time my wife got her transplant for MDS in the 1990s. She wrote her transplant story here.

You are doing the right thing by seeking out people who can be supportive and who have been through what you are going through. I wish you the best of luck and I hope that you will remember to take care of yourself, not just your husband.
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