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MDS Myelodysplastic syndromes

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Old Wed May 1, 2019, 10:40 AM
meagansmom meagansmom is offline
Join Date: Dec 2018
Location: Georgia, USA
Posts: 6
MDS and frequent hospitalizations

My mom was diagnosed mid November. She is now in the hospital, counting the initial hospitalization for the 6th or 7th time since diagnosis.
Anemia, neutropenic fever, flu, pneumonia, infection, now UTI.

Her labs were looking better. Her follow up BMB showed improvement. But just after that she was hospitalized and her labs are not doing that well. The doctor said if he hadnít seen the biopsy results he would think the Vidaza wasnít working. He has held the Vidaza due to labs and illnesses. But he last said when she restarted it would be 5 days of treatment instead of 7....but it has been 8 weeks now and she canít seem to get well enough to restart.

I am just not understanding all of this. She doesnít want to die but she HATES the hospital and hates is an understatement. I am thinking she may just decide not to continue with treatment of it means continued repeated hospital stays.

Any insight or information or advice would be helpful.
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Old Wed May 1, 2019, 02:35 PM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,492
There are a couple of approaches you could take.

You might ask her doctors or a hospital administrator if some of the care she's receiving could be performed at her doctor's office, an outpatient clinic, or even by a home healthcare service if insurance would cover it. She probably has to be in the hospital for critical care, but perhaps she doesn't have to return to the hospital for every single problem.

If the hospital has social workers, hospital chaplains, or therapy animals, then perhaps visits from them would be helpful.

If you think she'd discuss it frankly, you could ask your mom what about the hospital is most annoying her. Perhaps some accommodations could be made, but you need to know the details. Is it noise? Food she doesn't like? Overly bright lights? Lack of privacy? Poor sleep? Lack of visits from family? No TV Guide? Not being told what's going on? Any of these might be contributing to her dismay at being there.

Doing something about the little annoyances might help her cope, and it will certainly show her that you're trying to help.
Founder of Marrowforums and caregiver for my wife
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