Patti here, I sure needed to see your posts this evening, it has been a crazy day. Dean and I are so new to this disease. As I said, it is just the two of us and our 12 year old Chihuahua, Pebbles, no siblings or children. My mother is still living, she is 89.
When Dean was being discharged from the hospital they told us to get in touch with Hospice, which we did. Found out that is something we shouldn't have done. The hospital told us Hospice is there for supportive services, but that wasn't true in our case, they wanted to put Dean in the end of life care and have us sign over his Medicare coverage to them, then they would be in control of his care. We said no, we aren't looking for that yet.
We called our family physician, he put us in touch with a home health agency that his office uses, and someone is coming out to talk to us tomorrow. I have no idea what services are available, but anything would be better than nothing. I feel as though I am being pulled in two different directions between my mother and being here for Dean.
Anyhow Dean begins Dacogen on Monday, he is fearful but anxious to begin treatment. During this time, he will also be taking Revlimid orally. Greg, your posts are so very helpful, I have copied your last reply and will have Dean read it, it will give Dean some hope. He has been so depressed the last few days and that is not like him at all. Yesterday Dean saw his oncologist and his counts were all down even though he had a transfusion before being discharged from the hospital, so this morning he had to have more transfusions of packed blood (is that correct) and platelets.
Joan, thank you for letting me know about your husband and the coverage for the drugs, that will help Dean and I rest a little easier and concentrate on treating his MDS. Dean also doesn't get on the computer very often, that is usually left up to me, Dean always says "I am better at it", but I think that is just his way of not having to do it.
We haven't lived in Clearwater very long, just under a year, so we haven't met any really close friends or a church we feel is the right fit. We moved here to be closer to my mother, before this we lived in Orlando, about two hours away. Like you, I love to give hugs, they are so very special in letting someone know that you care and you are wrapping your love around them. Thankfully my very special friend from Orlando is driving out to visit on Sunday, we can't wait to see her and her husband.
Also Greg, thank you for explaining the RAEB 1, RAEB 2 and RAEB-T, the oncologist is saying RAEB-T, I thought he had written RAEB 1, so Dean and I were mistaken.
I can't thank you enough for being so supportive and caring, and taking the time to share all your information about MDS with me. You make us feel less alone in this challenge.
Joan and Greg, from Dean and I, many, many ((((HUGS)))) Thank you so very much for helping us face our fears.