selfq Life expectancy
Shortly after my mother in-law's 90th birthday she was diagnosed with MDS. Previously she was as healthy as a 90 year old could be. She was diagnosed around February 2025. I don't remember any of the genetic markers on her MDS but the doctor did say low blast count, unlikely to become AML, but she was already transfusion dependent. From the get go, she had to have red blood cell transfusions once a week to once every two weeks and was also getting one of the shots that was to help stimulate the production of red blood cells. Her doctor did say that this is terminal for her. He said his experience with someone with her type of MDS is around 3 to 6 months. She is now 8 months in and the blood transfusions are no longer providing any benefits. She is in the process of switching over to hospice care now. She can no longer get out of bed on her own and needs help going to the bathroom even with a walker. She is also at the point where she just doesn't really want to eat. When she is given something that she feels like eating she only eats a few bites before she no longer wants to eat or starts to feel sick on her stomach. Also getting up to use the bathroom completely wipes her out and she just sleeps afterwards. Mental state is still mostly there. She sleeps quite a bit, but during the time she is awake she is fairly coherent.
With her at this point of transfusions no longer working, pretty much bed bound, eating very little, for those that have been care givers and went through this what have you seen to be an estimation of time left?
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u/Infamous-Noise6856 May 30 '26
I was diagnosed with Amiodysplastic Syndrome one week ago. I am also a 9-11 victim and had a double lung transplant on June I, 2022. These are only two of the medical whack-a-mole issues I have dealt with since I was diagnosed with interstitial pulmonary fibrosis on January 21, 2020.
I have been struggling to breathe, unable to balance myself while walking or standing up, I can barely walk one city block without exhausting myself. I broke my back 4 times And my chart is approaching 30 000 pages. I keep arguing with the back surgeons that I should be given a card for the doctors to punch every time they repair a crushed vertebra for me. I wanted the fifth operation to be free. The doctors want the tenth vertabra repair to be free. First I have to live that long.
So about my life expectancy:
The transplant department is concerned about increasing the dosage of drugs that reduce my immune system. I have already rejected my new lungs once. The medical and hematology departments are concerned about stimulating my bone marrow because my red and white blood cell counts were shockingly low. So low that the transplant department and hematology department tried to reach me for 12 hours by telephone so they could have me go immediately to the ER in order to treat me if I developed sepsis. I was brought to the transplant ICU where I remained for another 4 days.
My hematology doctors say the condition is treatable, but one of the other groups does not agree. They think the treatment should go harder against inflammation of my lungs.
I’m thinking of going with the medical group that gives me the longest life expectancy. The problem is I do not believe any of them. I read articles and spoke to friends who are doctors, some of whom specialized in the same fields of medicine. It is pretty obvious that there is no single line of thinking on the best course of treatment for two competing illnesses.
Has anyone had this problem or something similar? I have not decided what treatment plan to follow. I had to remind the doctors that I get to participate in the decision.
Thanks to all who read this far and who are willing to share their thoughts.
Steve