Suspending transfusions for MDS – what to expect?

[MattieM]

Our 87-yr-old mother lives in a skilled nursing facility in another state, and was diagnosed with MDS in August 2011. She also has advanced COPD (on oxygen 24/7 at 6 ltrs/min) and diabetes. While she’s almost completely deaf (audiologist says her test scores are the lowest she’s ever seen), she’s still very sharp mentally, and she elected NOT to have any treatment other than transfusions as needed. She’s had 3 rounds over the last 10 months and will probably need another soon.

Recently she started saying she’d like to stop getting transfusions & “let nature take its course.” She has agreed to postpone the decision until after her next transfusion to ensure she’s at her best physically & mentally when she decides. Family members will support whatever choice she makes.

We’d like to know some specifics on what “nature’s course” might entail, so she is well-informed about what to expect. Right now she’s envisioning becoming increasingly weak & sleepy and just drifting away with no discomfort or pain and no agonizing decisions for family members. (Living Will, DNR, DNI and medical power-of-attorney paperwork is in place.) Realizing that there’s no way to predict what an individual patient’s path will be, I’d like to hear what others have experienced, so we can go forward with our eyes open. Thanks for sharing.

[Birgitta-A]

Dear Matti,
Many patients with MDS have low white blood cells and get infections - often pneumonia. Other patients have low platelets and get bleedings. It is not so common that transfusions are stopped but we can live with very low HGB because we get used to that. Then your mother's other diseases make her more sensitive so she will feel the low HGB more.

She will perhaps have difficulties to get enough oxygen with both COPD and low HGB. That should be prevented and as far as I understand she ought to continue transfusions. Her doctor will tell you about what you can expect.
Warm regards
Birgitta-A
73 yo, dx MDS Interm-1 2006