Guest guest Posted June 13, 2004 Report Share Posted June 13, 2004 , First, my prayers are with you and with . I know first-hand how scary all this is. Karrie is having her tests done on Tuesday. It's been really rough getting through the wait. One doctor told me that Karrie's low wbc and decreasing platelet count was pre-leukemic " . Dr. Capone says he isn't sure what is going on. As much as I m dreading Tuesday, I'm looking forward to it finally getting here so I know what we are dealing with. Dr. Capone thinks the right side of her heart is enlarged. She was dx'd with pulmonary hypertension and congestive heart failure when she was 3 days old. By the age of 2 years, she had been released from cardiac care. Now, I'm not sure WHAT is going on. Will she always have CHF and PH? Sigh...so many questions and another day to wait to ask them. I'll be thinking about you all. Keep us informed!! Sue mom to Kate 14 and Karrie 8 w/ds and other issues Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2009 Report Share Posted April 28, 2009 Dear , A very good question and one that I asked early on after my diagnosis. If you look at all of the numbers on the CBC, you will notice that not everything is within normal limits or either on the high or low end. My wbc has gone down as low as l.0. That is because I think your counts are being suppressed by your drugs. This is not good, as it is considered to be neutropenic. Now I have become transfusion dependent. For over 12 years, my wbc has been below normal, (2.4) so I think this is not a problem, her counts are not dangerously low in contrast to others. There is not that much difference between 6.5 and 7.0. I personally think is doing exceptionally well, considering she was only diagnosed a short time ago. When I was on Gleevec in the beginning, I used to walk 3 miles every day, which was a holdover from a prior trial. Eventually I was unable to continue because of problems with my feet breaking, but I do think that pushing yourself to do exercise would help eliminate the fatigue. I hear this from other people who have started exercising. Blessings, Lottie Quote Link to comment Share on other sites More sharing options...
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