Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

How will I know? End Stage of MDS

This topic has 2 replies, 3 voices, and was last updated 1 year, 11 months ago by Jack Allen.

Viewing 3 posts - 1 through 3 (of 3 total)

Author

Posts
April 25, 2022 at 8:47 pm #57877

caroline Brown
Participant

My 85 year old Dad has MDS, doctors said it was time to stop transfusions. 1 week ago his HGB was 7.3 down from 9.2 the previous 2 weeks. He is sleeping alot, is extremely breathless. I live 635 miles away and have been going down every few weeks to see him. I am going down again Thursday. His color is gray and tongue a strange color i am told. Does anyone have any information on how long my Dad can live without a transfusion? This forum is so heart breaking, my love and support goes out to each and every person suffering and leaving this life and for all those who are close to them and missing them. Caroline

April 27, 2022 at 9:52 am #57942

Pat Lawson
Participant

Caroline my husband passed away a little over a year ago at 66 years old. I can only tell you my experience and remember that every one is different. My husband was receiving blood and platelet transfusions weekly and decided after 6 months to stop the transfusions. We called hospice in and he lived another 2 weeks after that. If you are going to be at home with him please make sure you have others to help you. I was blessed to have my son and daughter there. I pray for God to give you strength and comfort as you go through this end journey with your dad. He is blessed to have you.

May 15, 2022 at 1:35 pm #58139

Jack Allen
Participant

Caroline,
Going down to 7.3 from 9.2 over 2 weeks is equivalent to 1 bag of blood every week.
I have been doing that for several years and see no reason to stop any time soon.
I have many other co morbdities including heart failure.
For the last several months my shortness of breath has become unbearable from lung problems and probably
clinical trial luspatercept and I am taking tests to determine if I qualify for O2 at home.
It sounds like your dad is either eady to throw in the towel or he has a lousy doctor.
Author

Posts