Transfusions for end stage MDS

[mroman]

Hi, I haven't posted since the list serve days. My mother was relatively stable on her meds for many years, needing only the occasional transfusion.

It appears her meds are no longer working; her doctor is trying different things but we are assuming she is now transfusion dependant.

Her health is very frail. She has congestive heart failure, severe osteoporosis, some cognitive loss and is basically confined to her bed in a nursing home. She had a very dramatic decline over the summer, some of it due to her anemia not being properly managed while she was in rehab care.

Anyway, I was wondering realistically how effective transfusion therapy is long term for someone who is not in the best of health anyway. I can still transport her myself to the transfusion appointments but will have to rethink this if she becomes more bedridden and would have to be transported by ambulance to these appontments. Her quality of life is not great at this point but she is still aware and 'with us'

[Marlene]

I would approach this from a "comfort" point of view. Getting red cells will not cure her MDS but can make her more comfortable. It sounds like you may be thinking of palliative care at this point and red cell transfusion can go a long way to making someone feel better. Less fatigue, no headaches, better breathing.

[mroman]

Thanks, Marlene. The nursing home actually asked at what point I would consider discontinuing transfusions. I was a bit shocked at the notion, I would not want to do something that would hasten her death, she would have to be much worse off, and I think it would be the congestive heart failure or other possible failures that would be the end for her.

Framing it as palliative care makes much sense to me. If her counts are kept from dropping, she will be more comfortable.

My mother was lucky in that her disease was fairly stable on the anemia meds for many years (Epogen/Neuopogen). (they've had to increase the dosages over time). I always considered transfusion dependence (not having had to deal with it) as a last resort effort that had many possible negative health consequences and not a long term solution. Not that my mother really has a long time left.

I know many here have probably been transfusion dependent for many years, but I am new to this aspect of the disease. And if it will make her comfortable in the time she has left, I suppose worrying about complications and side effects of transfusions is really only a small part of her overall situation.

[Marlene]

I don't understand why more docs and nursing home skip the "palliative care" option. You may want to find someone who can help set up a good palliative care program for her.

Take care,
Marlene