Re: what to expect after 1+ month of treatment

From: Becca
Date: 02 Dec 2004
Time: 00:50:43 -0500
Remote Name: 68.228.36.80

Comments

Coping with aplastic anemia is rough, so I don't know what kind of advice to give there. The part that I find especially tough is the waiting and not knowing whether or not the situation will be resolved. If someone could tell me that in X months, I would be recovered, I could just start counting down the months. Unfortunately, no one has a crystal ball. If your brother and the rest of the family are having a difficult time coping, my number one suggestion would be to make a strong effort to maintain some semblance of normalcy. That includes normal activities including having (HEALTHY) visitors. Clearly, most activities will have to be modified, but for now, that's the way it has to be. I have no way of knowing for sure whether this was a factor, but my counts were the worst when I was isolated and sedentary. I can say with certainty that depression does nothing to aid in recovery! The shots that you mentioned (in the context that your brother was no longer taking them) were probably Procrit/Aranesp/Epo (stimulate production of red blood cells) or GCSF/Neupogen/Neulasta (stimulate production of neutrophils). I'm not a doctor, but becoming independent of these "growth factors" is a good thing. The more that your brother's marrow can do on its own without becoming reliant on drugs, the better. You will find that most people with aplastic anemia have, at one time or another, taken growth factors. Some people in remission do, too. As far as the exercise issue, again, I don't know your brother's history and I'm not a doctor....as you can read in the archived forums, the majority of people who post here advocate exercise or some kind of fitness routine. What your brother can or can't do will depend principally on what kind of health he is in now other than the bone marrow problem and what he was accustomed to doing before he was diagnosed. Any impact activities, contact sports, activities where there is a risk of falling, sustaining a head injury, being hit by a ball, etc., should be refrained from because of his low platelets. He should not tax his heart, especially if his hemoglobin is low enough to warrant a transfusion in the near future. Some doctors have told me not to exercise other than slow walking (and they would kill me if they read this post!), most have told me to do anything I wanted (other than the aforementioned dangerous activities) as long as I didn't overexert myself. I have been lifting (light) weights and working out on the elliptical trainer and stationary bike, and I feel significantly better than I have since I first got sick. I started in very small quantities and am building my endurance. If your brother does not enjoy typical gym activities, he could simply walk for exercise. I hope that this helps--let me know if you have other questions!