Signs of end stage MDS

[Kathy Stermer]

Simone, so sorry for all your going through. Besides all the emotional and physical aspects of dealing with all you are, it’s so distressing to hear you don’t feel you’re getting adequate information and support from your caregiving team. This disease is frustrating enough by itself without having to deal with all the other components of your health. Wishing you the best and hopefully you will find peace, dignity and some answers to what you need.

[Rita Altman]

This is the first time I have written but looking for opinions
My husband is 82 and also has dementia He was diagnosed with high risk MDS in October. We have done 5 rounds of Videza. Yesterday his numbers were at all time lows. The dr said transfusion dependency can greatly affect quality of life. Because of his dementia he does not understand that he is ill. I don’t know what to do. He does not sit still very well so the thought of transfusions that can take all day could be a nightmare. I am considering doing nothing when we stop the Videza. It is so hard to make life and death decisions for someone. Is this better for him or for me? Transplant is not an option for him. I will really appreciate any input and support

[Rose Palazzolo]

It is difficult to make these decisions and guilt follows you thinking did I do this for him or for me. My husband had MDs and was diagnosed at age 74. It will be 11 months next week that he passed and feels like yesterday and some days it feels years have passed. He did the Videza for two rounds. Went for the thirds and doctor said it’s not working. Those injections took everything out of him. He went down hill after that. He did the transfusions first monthly, then every three weeks then it progressed to weekly which also included platelets. From September to February he did the transfusions which was an all day thing at least six hours. He had no quality of life. We did nothing, he could hardly walk. He only went out for transfusions. He slept a lot, ate very little, watched a little tv and back to sleeping. When his counts no longer changed even after transfusions he made the decision to stop and we called in hospice. One month later he was gone. Since your husband isn’t capable of making the decision and counts are so low, maybe you should discuss with his doctor about hospice. It is a hard decision and most difficult for the caregiver. Hospice will make him very comfortable. Just be with him and love him, till the end. My husband was active, healthy, we thought and up and about until he was diagnosed. Nine months later he was gone, he lost 50 pounds in that time. If there was any chance he would be back to his old self we would have kept trying, but that was not going to happen. Talk to your doctor and hospice you will make the right decision for both of you. If you want to email me feel free at onecraftrose@gmail.com. Prayers for both of you.
Rose

[Mark Rogers Mark]

I have not posted in several months since my blood counts have remained fairly stable. In February of this year I had a bout with norovirus which almost killed me and I was hospitalized for 4 days.. Norovirus is a GI virus and produces extreme vomiting and watery diarrhea. It also had strong negative effects on my bone marrow and my counts dropped suddenly… After I was released I got two units of blood but that only lasted a month. Last week I had another transfusion of two units…I don’t feel nearly as boosted up after the second one as I did the first one.. I see my hematologist next week and will get a CBC the day before… If I end up needing blood more often I may just quit and let go… I am beginning to eat less, lose weight, and sleep a lot.. Also have low energy and shortness of breath all of which fits the picture

I have been reading posts re: end stages just wanting to know what to expect… Its all very sad and I’m not sure my wife is really prepared for all the pain and sadness but she is a strong woman and has cared for loved ones in her family as they get old and eventually pass so here we go again…

[Belinda]

Simone… only God knows where you are in your progression and when He wants you home. However, if your business is something you do at home and online, why not! Explain to your patrons there may be delays in your production and/or distribution. Let them know your diagnosis and reason you choose to work. People will understand.

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