[cyberpauly]

hi, my mother passed away about a year and a half ago from mds. i did alot of research into this condition and was surprised to find that it isnt lifestyle related. its still a confusing condition to learn about. i know my mother had anemia as a child, fauly chromosones might have had a helping hand, but specialists were still unsure. all i know is that the onset is pretty swift if its raeb type 2, which my mothers was.
another complication was a condition that hindered any chance of a bone marrow transplant. i remember once when she had an allergic reaction to platelets and she was left in a room for three days with staff not sure what to do for the best. there was blood on the floor and the commode wasnt cleaned. i think the staff were just scared and it was awful.
constant injections and biopsies took their toll and she looked like a pin cushion. a specialist recommended a hickman line, which was risky, but it helped my mother alot considering she was having transfusions twice a week. as for appetite, its best to try body building formulas because they have all the body needs and are loaded with calories. this helped my mother to keep her strength up when her platelets were low.
the specialists didnt object to this and at least she was getting some sustenance. and it was a half pint drink which was easy to digest, with at least 1500 calories.
alas, aml did set in and it was the worst experience of my life watching my mother die, my blood wasnt a match so i couldnt even help. you will go through a gambit of emotions, including anger and guilt. its best to make the time just to talk and just be there because it means so much in the end.
its a terrible condition and im hoping research into russian wild horses who roam around chernobyl with no ill effect will aid in the prevention of this and other cancers. to have 4 extra chromosomes seems to be the key, but only useful at the genetic level,
regards,
paul