MDS is a bone marrow failure disorder
MDS is a blood cancer
Learn More >

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.

80 year old father just started hispice

Home Demo forums Patient Message Board 80 year old father just started hispice


Viewing 4 posts - 1 through 4 (of 4 total)
  • Author
  • #63291
    Amy Johnson

    Looking for some advice or guidance. My father was diagnosed with MDS 2 years ago. None of the groth factors ever worked with him so he has just survived off the blood transfusions. His ferritin is through the roof since he has reacted with every iron overload medication. In the last month and a half his health has severely declined. Weight loss, weak, fatigued and just not able to live life. Since the blood is no longer working his oncologist has recommended hospice. My question is how long can he survive without the blood transfusions. I cant imagine it being very long considering he had to get them weekly. Anyone with similar experience i would love to hear from you.

    Pat Lawson

    My husband was receiving blood and platelets weekly until he decided to go into hospice. He stopped his transfusions and started hospice on new years eve. He passed away on January 13th. When he started having trouble with breathing they hooked him up to oxygen and increased his medications as needed to keep him comfortable. It would be a great blessing if you can have someone there with you as the hospice nurses do not stay there with you unless you are in a hospice facility. He is blessed to have you there with him. May God bless you and your family.

    Amy Johnson

    Pat thanks for sharing your experience with me. My father had his last blood transfusion on june 27th. His doctor had him come in the next day to check his hemoglobin, it was up to 9.9 after 2 bags. However even with having a good number he had no improvement. The next week we started hospice. This week it will be 5 weeks since his last transfusion. Im just confused on how he is lasting so long when i read on here people only last a few weeks. Someone is with my dad at all hours. Im just doing what im supoose to do.

    Ashley Moncrief

    Hi Amy,

    Thanks so much for writing in. Everyone is different, so it’s hard to give an exact answer on exactly how long someone can make it without transfusions. I know that’s hard to hear because there is so much uncertainty in it. I would reach out to the hospice staff as they are seeing him regularly and may be able to give more specific details. You and your family are in our thoughts.


Viewing 4 posts - 1 through 4 (of 4 total)

Register for an account, or login to post to our message boards. Click here.

  • You must be logged in to reply to this topic.



Search Forums

Review answers to commonly asked questions or get answers to your questions from an MDS expert