|
Hi Naive, I know your frustration well. And I'm not the patient. Just trying to advocate and sometimes I feel like I'm not doing a good job. I like to know the particulars and fix it. This unfortunately I can't. I know he is scared and doesn't really want to know all the details. I do the researching to try and make sense of things that come up and make sure they are doing the best they can for him.
I think some dr.s although may be excellent at what they do, they lack communication. Maybe perhaps it's this particular disease because it's so very complicated, with so many variables, that they don't want to cause alarm with some of the changes that can happen.
He's been on a regular transfusion trend. The last visit showed some changes, which of course grew more concerned. It is also hard when you have to wait for the next appointment to discuss what comes next or just wait some more. I know that's better than the alternative.
You are not silly at all! Just keep asking questions and don't feel stupid for asking. Wishing you the best!
Hi Dan,
Thanks for the link. I did read through it. So, it's probably related to cell destruction that makes most sense here. I appreciate your help!
|