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MDS is a blood cancer
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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.

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  • kathryn Mullaney

    Rose please do not feel bad about fearing these possible outcomes. My husband has been diagnosed with MDS for a year and a half. I recently felt that I had been digging my head in the sand and I really should educate myself. This site is wonderful and I also got a lot of info from the AA and MDS organization in Bethesda Maryland.
    There is a lot of ground to cover because of so many types of MDS that is out there. It is going to take awhile but I am pushing thru trying not to get too overwhelmed
    Hang in there and I hope it gets better. God Bless Kathy

    in reply to: Multiple Myeloma and MDS #45155
    kathryn Mullaney

    Suzanna you are in a difficult situation. If you can get away I would go. Make your own mind up as to how she is doing. Maybe you could go to a doctor visit with her and find our some information first hand.My personal experience has been to visit while they are still here with us.
    God Bless both you and your Mom.

    in reply to: MDS and Hospice #45108
    kathryn Mullaney

    Dear Jason, I am new to this blog but my husband was diagnosed with MDS, I had never heard of it until his diagnosis,about a year and a half ago. I am trying to educate myself about the disease, but I am an RN with 50 plus years experience with knowledge of taking care of a dying patient and also dealing with the wishes of a dying patient.
    i read the post from the MDS and and I understand what has been said and this is always an option! In the event your Dad does not want to try this way, it is perfectly ok to honor his wishes.I am sure the Hospice nurses have been reassuring to you and and your family as well as your Dad and I hope they have explained what you can expect.

    I think one of your biggest concerns is the withholding of the blood transfusions. This is considered extraordinary and would only prolong things. Your Dad will experience probably more of his weakness that he experiences already but if so they will not push him and keep him comfortable and pain free.
    As long as he is drinking some fluids without difficulty it will be enough to sustain him but once this stops he will probably just go to sleep until it is time! I hate to use the probably so much but unfortunately this process is not an exact science.

    I was with both my Mom and Dad when they were dying and it was hard but I feel so blessed to have been able to do this with them.

    Please remember that this process is normal, hard, but ok!!!! Your Dad will be kept comfortable and all the simple helps for the Nurse and family will be available to you all.

    I will keep you all in my prayers and hope this goes well . God Bless you all

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