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@Bailie, I have been home since day +17 or so and have not been readmitted to the hospital. I have been following the guidelines that were given to me pretty closely - something changes or doesn't feel right, call the doctor. Have a question, call the doctor. The staff is on call 24 hours a day and I have called them 3 times during those on-call periods since getting out of the hospital. I am able to take care of almost all of the physical aspects of living - I cook, shop, clean a little - very few chemicals.
My team of doctors has on-staff social workers, psychologists, and other counselors who work with transplant patients. They also have physical therapists that they work with on a regular basis as needed, so I would say that I am not on my own for any of these issues. I would certainly ask your team about the different services they provide to you as a potential BMT patient though. I interviewed 3 different centers before deciding to stay local because of the amount of support and experience that they have doing transplants, particularly with MDS/AML.
@Dave and Steve, thank you for the well-wishes as always. It is a journey, not a quick stop and fix.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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