[Hopeful]

Hi Justin,

I am a big believer in second opinions. Make sure your grandpa is seen at an MDS Center for Excellence. Be sure to get a copy of all of his previous labs and BMB report. It is helpful to track the trends of his HGB/platelets/ANC in a spreadsheet. Go with him to the appointment if you can.

How many bags of blood is your grandpa getting per transfusions? How much of a boost is he getting from the transfusion?

Was your grandpa's MDS diagnosis based on a BMB? Has he been tested for B-12, folate, and other vitamin/mineral deficiencies?

When your HGB is between 8-9, you feel tired all the time - both mentally and physically. I remember waking up and feeling exhausted after 10 hours of sleep! Eventually, the body will adjust to the lower HGB, and he won't feel as bad, but he will still be tired.

Is your grandpa still getting shots? Are they Vidaza shots? This is an important thing to find out. If he is, all the research that I have heard is that you don't want to stop them prematurely! If the Vidaza works, his counts could improve and he could have a very good quality of life for a few years. Quality of life is very important here.

Getting frequent transfusion will eventually cause iron overload issues. Get that second opinion and talk over the options with another doctor, if only for the different perspective.

Kind regards!