[Kathryn]

Once a person becomes platelet refractory - is that it for platelet transfusions?

My mother was diagnosed with MDS 16 months ago and, at 88 years of age, decided not to do any treatments except red blood and platelet transfusions. She has had a pretty good year plus, but experienced numerous urinary tract infections. Her platelets have been as low as 3000 and as high as 78,000, averaging around 35,000. Her hemoglobin seemed to average around 9 and her white blood cells were 2 to 3. When she left the hospital a week ago her platelets were at 13,000, her red blood was at 9.2 and her white cells were up to 7 (unusually high).

In the past month she was admitted to the hospital twice due to blood clots in her bladder restricting urine flow. During the last hospital visit they gave her 4 platelet transfusions (single donor) to try and stop the bleeding in her bladder - none of which bumped up her numbers (they stayed at around 13k). The hospitalist and her hematologist said there was nothing more that could be done and will not give her any more blood products. She is now home and in hospice. She is in pretty good spirits and really has her wits about her for a 89 year old. She is still bleeding from her bladder, and is hooked up to a continuous bladder irrigation device to keep her comfortable.

So I am haunted, wondering if we have done everything we can to help her. Since she is in hospice she can no longer receive any blood products and we are trying to figure out if we can even get a CBC. We do have the option of taking her out of hospice to see a doctor re: treatment, but her doctor will do no more blood treatments. It does feel like doctors look at my mom and see an older person who's had a good life and should let go. In fact, when she first went to the hospital when this whole journey began, one of her hospitalists said she wouldn't give my mom platelets and that she should just go home and have a glass of wine and relax. Well, we didn't follow that doctor's advice and she's had a great 15 months since. So, my question is, have any of you heard of a case where platelets would not take, then they would? Also, I'm open to any advice about anything I've written. Thanks so much..