I have been caring for my mother n law for the past yearand a half. I went to Florida to help with her whewn my sis n law called me crying that she did not know how to handle the problems and the c-diff that she had also contracted from a hospital stay. She was advanced mylo and was getting blood transfusions about every 6 months. I brought her home with me to Texas, I am 53 with heart damage and asthma, but the only person with any medical background to know how to care for her.
We have progressed in this year..(she is 82 yrs old), to getting blood transfusions twice a month. The problem is after so many transfusions her body refuses the same type blood more than once, so a search has to go on to find more blood with antiboties that will work. We have come to a crossroads now, as the last batch they tried to get had to be a nationwide search, and only produced 2 units, not the 3 we needed.
It has been 1 1/2 yrs now since I brought her here, and my husband and I explained the situation to her, she has made the decision not to exhaust resources hunting precious blood. She said for us just to "let her go". She is a very brave woman, and the future days are going to be the hardest I have ever faced.
My question is this, what is going to kill her? The animia for sure, but no oxygen to the brain, then? Heart attack? Major infection? Organ failure?
Her spleen is enlarged and has lumps, her liver is also enlarged both trying to produce blood but not being able to "keep up"...she has bled out of her tearduct which I was told is the beginning of Leukemia. I have been beside myself trying to deal with the lack of information for those like myself.
Today she is pale white, and very weak. She has severe night sweats. At night I cannot wake her sometimes. All this and she still has a good appetite. I was also told once she turns away food it will be from 5 to 16 days untill death. I am very tired and I know she is exhausted. Her vitals are holding steady at the moment.
I just wish there were someone to tell me whats next.
I do not mean to scare anyone, I just hope my story helps someone with a question out there, as I have only my experience with my 82 yr old mother n law, who has had this for I do not know how long.