View Single Post
  #118  
Old Mon Oct 21, 2013, 06:22 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
Hi barlows69,

Nobody wants to learn that they have MDS, but you've already had one bit of good fortune: having that blood count test and getting to the hospital in time for transfusions. At this point your husband will need CBC (complete blood count) tests regularly so he can get transfusions if his counts get too low and before it's a crisis. Transfusions may not be a long-term solution, but they get you past the crisis so you and the doctors you can gather more information and decide what needs to be done.

If he didn't already, your husband will probably undergo a bone marrow biopsy and aspiration, to find out what's going on in his bone marrow. That will tell you some numbers, like the "blast count" (a measure of immature blood cells in the bone marrow) and should let the specialist determine his MDS "subtype".

That information, and his age and overall health condition, will determine which types of treatments are to be considered.

Meanwhile, you'll want to learn what you can about MDS. It can be rather confusing at first, but as patients and caregivers we can actually learn quite a few details without being physicians ourselves. You can ask questions here at Marrowforums and you can read about MDS with information from either or both of these two great sources:
  1. The Aplastic Anemia & MDS International Foundation's educational packet (a free package you request).

  2. The MDS Foundation's Bone Marrow Book (a large PDF file you download).
You'll want your husband to be treated by an MDS specialist rather than a hematologist who hasn't worked with MDS patients. There are specialists at Oregon Health & Science University.

You want to learn enough about MDS that you'll be able to understand what the doctor says about his situation, and to have back-and-forth discussions with the doctors about your husband's care and treatment. Although you and your husband could simply let the doctor make all the decisions, I think that patients do much better when they participate more directly in their own care and understand the choices and tradeoffs.

Think of the most important questions you have and write them down before appointments. Then you can go over them with the doctor. It's good to take notes, perhaps carrying a notebook around with you, since it's otherwise hard to keep track of what you're told and what you want to remember. I suggest asking for copies of your husband's CBC test results each time his counts are measured, so you can observe if they are going up or down week to week and which counts are of concern. If you're good with spreadsheets, keep track that way.

Let your whole family know what's going on so they can be part of your research and support team. We're on your team too!
Reply With Quote