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My Mom at 97 may stop her transfusions for MDS

This topic has 8 replies, 8 voices, and was last updated 1 year, 3 months ago by Eric King.

Viewing 9 posts - 1 through 9 (of 9 total)

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September 27, 2022 at 7:49 pm #58678

Marc DiMaggio
Participant

I am heartbroken, my mother was diagnosed 3 years ago with MDS, low RBCs, treated most recently with Reblozyl, Reticrit, and transfusions. Now due to multiple other serious health issues, my sister wants to stop transfusions and treatments. I know this will mean death and cannot accept it. Yes, it is hard for her to be transported to transfusions and maybe it is dangerous, (she also has CHF, Afib, kidney failure) I do no know. I thought this decision would come from the physicians not my sibling.
I cannot let go, my mother has always been there for me. Anyone stopping treatment?

September 27, 2022 at 8:00 pm #58679

Mar
Participant

Dear Marc,
If your Mom is lucid then it should be her decision and respected. If not, then perhaps a meeting with your siblings, mom’s doctors, if you have a belief in God, then also with your spiritual father.

My best to you and yours,
M

October 2, 2022 at 4:56 pm #58704

Carolyn Stein
Participant

I agree with M. Make your mom part of the discussion, if she’s able. It’s her life and her wishes should be honored, or at least greatly considered. God’s blessings on you all as you go through this period of transition.

October 4, 2022 at 8:20 am #58707

lisab
Participant

I have to agree with the above posts. Your mom has been blessed with a long life. Many cannot say the same. I have found that people get tired of the fight and know it is time to go. The decision is hers. She is the one who has to endure.
Best of luck to you all.

November 17, 2022 at 3:35 pm #58821

Richard Wagner
Participant

I am 85 year old male, and have had MDS for 7 years now. Was told I would die five years ago, but held in there. Took Vidaza chemo for six months, and did not like it. I started getting Transfusions this year and needing more and more. I am planning to stop all treatment soon. Just tierd of all the BS dealing with CBC numbers, hospital visits etc. This MDS is a Terminal disease, and I have no fear of dieing. I have a Hospice company lined up and
will let my wife of 37 years give me drops of medicaton to ease pain and suffering.. I have a great wife.
To the children of patients.. Pleae let you parents make the end of life decisions.

November 17, 2022 at 4:08 pm #58822

Marc DiMaggio
Participant

TO all who have responded, one fact I did not include.. my mother was not able to speak or make the decision. Of course, we would go with her decision but it was not possible to know her choice. My mother passed away after I left the message…

December 20, 2022 at 8:04 pm #58945

Carol Ward
Participant

I am sorry to hear of your mom’s passing. At least she is at peace. Your sister probably knew she was not going to make it that is why she stopped treatment probably. I hope all the wonderful memories you have of your mother help you during your time of grief.

December 20, 2022 at 9:48 pm #58946

Mary Barto
Participant

God Bless you all💙

January 9, 2023 at 7:44 pm #59021

Eric King
Participant

May you be comforted with memories of your mom and her long life. My dad died at 94 and my sense is that he had a good life. I hope you have a similar sense of your mom.
Take care.
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