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Re: Update on Larry

From: Marla

Date: 9/28/2003

Time: 9:45:02 PM

Remote Name: 209.179.251.80

Comments

Hi Laura:

Glad to hear that Larry’s problem seems to have cleared up on it’s own. I think Marlene’s given you good suggestions again. :o) Personally, I prefer docs who are conservative like yours. It’s really an individual choice based on how you go about handling your affairs. I think that with conservative doctors you have room to make your own decisions and not be pushed into a treatment with which you’re not ready to go through. I’ve noticed more aggressive docs are ready to blast you with the big guns if your bone marrow does a minor burp. I think those are the docs to stay away from. I also like the approach your doc has about holding off with the transfusions as long as possible. I think when to transfuse is different for everyone. The usual guideline is to transfuse when the hemoglobin falls below 8, but I’ve waited to go into the 6s and 7s before transfusing, while I know others can’t stand it when they fall below 9 or sometimes even higher. If your husband feels okay and doesn’t have any other health conditions like kidney or heart problems, he’s probably okay to wait a bit. But as Bruce wrote, you do need to be careful not to push yourself when you’re feeling bad/tired/heavy. (I know my body felt really heavy when my hemoglobin was at transfusion level). I suggest to rest more and move more slowly. No rushing around. Also, keep him well hydrated to make sure at least his plasma volume is good. Keep in mind that when the hemoglobin gets low, the heart has to pump more to push what ever little blood there is around to oxygenate the tissues. That’s going to make things uncomfortable for Larry and probably wear him out more. (Not to mention the annoying pounding sound you hear in your head when the room is quiet). In addition to possible future BMT complications, some doctors like to hold off as long as possible to transfuse because some believe that it allows the body to try to make more blood on its own. When you transfuse a lot and very often, some think that it makes the body produce blood slower because the body thinks it’s got enough blood already. Some people don’t like to go through the uncomfortable feeling of low hemoglobin and just prefer to transfuse for comfort’s sake. So, it can be a personal call as far as when to transfuse.

If you are to get a second or third opinion, watch out for treatment offers for clinical trials. Make sure you understand how those work because they tend to be geared more for the benefit of *future* AAers. Some people like to be on the cutting edge, but there’s a fine line between cutting edge and guinea pig.

Take care,

Marla


Last changed: September 24, 2006