[DanL]

Disneydad,

I am sorry to hear of your mother's condition. This is a disease that has not received enough attention and a lot of the information available is rather old.

In a nutshell, when MDS progresses, it progresses in a couple of ways.

1) progressive cytopenias - meaning that the blood counts start to get worse in all three blood lines, or the severity of transfusion need increases substantially.

2) conversion from mds to aml - basically the bone marrow is producing too few good blood cells and a lot of immature blood cells resulting in the aforementioned cytopenias. The immature cells are called blasts.

Aside from other existing illnesses or health conditions, the two most common causes of MDS related death are infections due to low white blood counts and bleeding (internal or external) due to severely low platelet counts. Sometimes the low blood counts can cause additional stress on the body and affect other internal organs if left unattended too long, which is why it is key to keep on top of her blood counts.

As for the suffering, other than the stress of dealing with a disease that does not have a sure-fire cure, I don't experience any disease related pain or suffering. I think some others in the forum may be able to provide more insight, but so far as I have experienced, the disease itself is not directly resposnible for physical discomfort.

I wish you and your mom well.