MDS is a bone marrow failure disorder
MDS is a blood cancer
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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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  • in reply to: MDS patient who stopped treatment #63268
    Bonnie Sweeting
    Participant

    My Dr came out and assessed me for MAID. He told me we were shooting for October 23. He told me I had really gone downhill. He has known me for 20 + years! He set me up with oxygen … it was delivered Friday pm, higher dose of morphine and nitroglycerin. A couple of things to close … next week I should be going to the hospital x-ray department to have a pick ? line put in. It is, to my understanding, an IV line that is put in your chest to administer pain meds etc. The last thing is, and yes I don’t want to hear it, because of being on oxygen, I have to disconnect everything to go outside to have a smoke. I know when I was outside today, I didn’t like the not being able to breathe, but by 5 I think my dna changed to rabid bear … not looking forward to when breathing is worse.

    in reply to: MDS patient who stopped treatment #63231
    Bonnie Sweeting
    Participant

    So, Dr. called and is going to get me assessed for MAID. My husband doesn’t want me to have it, but I think he’ll change his mind later on. He asked me about pain pills, and like an idiot I said no …. a couple of days later I called him and he gav me a ‘script for morphine. I have been off treatments since May 17. I have to admit it, but I feel like I have really gone down hill since then. Today my breathing is more like a small gasp. Let you know more in a couple of weeks!

    in reply to: MDS patient who stopped treatment #63212
    Bonnie Sweeting
    Participant

    Update: Went to Onocologist today for final appointment. He told me that when the blood count hits 50-60 is when the sleeping 20 hrs a day will start. He also said my heart would also give out. I told him my heart was starting to throb. He was willing to give me pain meds. I told him I just take my Advil. He is going to call me in July to see how I’m doing. He also said he couldn’t tell me how long it would take from first symptoms to end. My primary care physician (also does palliative care)is going to check on me in 2 weeks. I have to remember to tell him about my hand cramping, and falling over when I sit in a chair! Thank you Judy and Lisa for their comments.

Viewing 3 posts - 1 through 3 (of 3 total)

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