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#1
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End of battle/ support family can give
My father-in-law has MDS. His doctor has told his he has months left. He receives platelets and RBC twice a week. His platelet count Monday was zero. They are having a harder time finding him blood that his body does well with and he body is starting to reject his platelets. (i am not sure if that is the best way to say that) He is beginning to see new symptoms such as petechiae and mouth sores. He is starting to have pain and is having difficulty sleeping. We spoke to him tonight about starting hospice care. He was not quite ready to face that until now but we have looked into the best hospice provider and are ready to help him set it up. I know from my experience with a chronic illness that patient forums can be a lifesaver, literally and figuratively. I have been searching to see what we might expect in the coming weeks and tips or hints to keep him comfortable. If you can point me to a thread that covers this I would appreciate it. I could not find one. I would greatly appreciate hearing your experience and any helpful hints. I have had trouble finding information about the type of things to expect. Thank you so much for you time.
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#2
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Hi daughter-in-law. So sorry your dad has reached this stage in his MDS. My own father-in-law is fading away in palliative care at present, due to left ventricle failure and mesothelioma. It's sad isn't it. His brain is still good but he's just so weak now. He has been a wonderful replacement for my own father who died when I was in my early 30s and I love him dearly. You obviously care deeply for your f-i-law too.
Palliative care people are usually focused on keeping patients comfortable and they are experts at it so try not to worry. The main thing will be to be there even if just to hold his hand, have gentle chats and give him regular hugs. Just wanted to suggest also that if you can get medi-honey it's very soothing for mouth ulcers.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood. |
#3
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Thank you Cheryl
Thank you Cheryl C. I am sorry to hear about your father-in-law. I appreciate the reply. Thanks for the medihoney tip. I found where I can order some. I had not heard of it before. Little things like that can make such a difference in feeling comforted.
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