Debbie,
Hey,..Listen, the first thing you have to do is admit that your life has changed from what you were used to. People don't get this disease. How can they ?? When it's a one in 2 million and most people don't even know what your bone marrow does> They just don't get "it". And "you don't LOOK sick". people will look at you differently and I know that you don't want to be defined by your illness. This is a difficult illness to have, no doubt, that's why you talk to people and relate to people who DO understand. Try not to get angry at those who dont and I know how tired you get of explaining it to people. As far as "Life expectancy" Who knows"" Like I said..at one in 2 million, there really arent enough statistics to get a guarantee. but where in life do you?? So just be aware ...knowledge is POWER. 20,000 platelets isnt sooo bad. Just be careful...no aspirin,try not to get injured or cut,don't bend over real fast(brain bleeds can happen)see your gyn ,DON"T take medications that may effect hormones(The lastest studies suggest hormones may be relaled to AA),Red Bood cells...you'll know if they are low...shortness of breath,pain and throbbing in ears and head due to lack of oxygen in your organs...You'll have no symptons from the WBC ..just be aware of what yours is..You should be taking your temperature..anything around 100-101 you should take an antibiotic that you have been given for home( I had Levequin) and get to the ER. Your body naturally has bacteria and fungus that you can't fight off with now WB cells. Watch what you eat..fresh fruit and veggies,yogurt, andything that may have bacteria is a no no. Like I said Knowledge is POWER. You can take your power back over this disease. And lastly, go to NIH website at
WWW.NIH.gov and read also click on the right side and see what clinical trials are being offered. Don't be afraid of clinical trials. You will NOT be a guinea pig...You will get the Standard care and then the clinical trial...not a "placebo" You pay for your initial visit to NIH (if admitted to a trial AAMDS will reimburse you up to $500 for your flight)After that NIH pays for your flights back and forth and part of your hotel>There are shuttles from most of their linked hotels right to the facility.Anyway,..I know this is scary, but you want to have people treating you that you trust and answer all your questions. I was at NIH for a month...ALONE...my husband stayed in Florida to care for my kids and home. I managed ,made a new family and discovered how strong a person I really am.Hope that I helped. Contact me anytime. My best,...Judi