Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
I am, of course, extremely grateful for receiving a BMT and having a successful recovery. My doctors, PA's, and nurses have been excellent, but the actual BMT staff has only been distant and bossy. They never meet with me or speak to me directly. They only speak through my doctor when I have any questions.
My issue right now is that they seem to be forcing me to keep appointments that I don't feel I need to keep. They have appointments scheduled for me to meet with a psychologist and social worker. I've met w/ both of them before and did not like them. I didn't feel that they helped me in any way and I simply have no desire to meet w/ them again. I tried to tell my PA that if I have any issues I talk to people who have actually gone through a transplant. And that always helps me. She literally said to me "it's protocol, and you HAVE to meet with them." I just don't understand what the "HAVE to" is about. Would I be reprimanded in some way if I didn't meet w/ them?
I'm not trying to sound difficult. I'm just wondering if it's normal to feel bossed around by your medical team? You will probably say that it is for my best interest, but when I've met w/ the psychologist and social worker before it's actually made me feel worse than better. I know what is best for me. I am happy to take my doctor's rules on what I cannot eat or what activities I cannot do, but this seems odd to me.
My issue right now is that they seem to be forcing me to keep appointments that I don't feel I need to keep. They have appointments scheduled for me to meet with a psychologist and social worker. I've met w/ both of them before and did not like them. I didn't feel that they helped me in any way and I simply have no desire to meet w/ them again. I tried to tell my PA that if I have any issues I talk to people who have actually gone through a transplant. And that always helps me. She literally said to me "it's protocol, and you HAVE to meet with them." I just don't understand what the "HAVE to" is about. Would I be reprimanded in some way if I didn't meet w/ them?
I'm not trying to sound difficult. I'm just wondering if it's normal to feel bossed around by your medical team? You will probably say that it is for my best interest, but when I've met w/ the psychologist and social worker before it's actually made me feel worse than better. I know what is best for me. I am happy to take my doctor's rules on what I cannot eat or what activities I cannot do, but this seems odd to me.
Try to ask your doctor directly why these appointments would be REQUIRED if you don't want them and feel that you don't need them. This would be weird, but maybe it's some kind of insurance requirement? Especially if you've already met with them before, why would you be REQUIRED to continue to meet with them?
Sal's doctor referred him to a doctor in the palliative care medical team, and we received a call from someone on the team about scheduling an appointment, but it was up to Sal to decide if he wanted to follow through and actually make an appointment.
Good luck!
Monique