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What do I do?

Home forums Patient Message Board What do I do?

This topic contains 1 reply, has 2 voices, and was last updated by  mdsfound 3 weeks, 4 days ago.

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  • #44794

    notyouraveragejoe
    Participant

    I am so blessed and fortunate to have my boyfriend. He is literally the love of my life. He was diagnosed a few years ago with preleukaemia a.k.a. MDS. It didn’t bother me when he told me about his diagnosis that much because he told me that he only has problems occationally. He goes to the doctor and they just monitor things. His symptoms don’t really come up most of the time but lately he has been having some symptoms occuring more often. He is going to the doctor soon. He already has the appointment made. But when I got to see his symptoms of his nose bleeding or his mouth bleeding (albeit it wasn’t that much blood) and seeing him look a little weak it made me feel a lot of things. Of course I was feeling scared, worried, upset, mad, etc. Partly because I didn’t want to watch the love of my life slowly die or go through painful treatment. And it’s hard when you meet the love of your life and get to know them only to find out that they can develope AML and either die or have to go through painful and intense treatment and may never fully heal or recover. I know right now I may not have to think about any of those things but I want to be prepared for this so I can be there for him and know how to support him because I love him.. I just don’t know what I should do if anything. Please help. Thanks

    #44796

    mdsfound
    Moderator

    Thank you for your post with information regarding your boyfriend’s health. I know this is a difficult situation for you and I would recommend that you take him to one of our Centers of Excellence in MDS for a second opinion. We do not give this designation to just anyone. He should be very carefully assessed before undergoing any treatment. You may also want to make sure that he is not being undertreated. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. We also have a wonderful information program called the Building Blocks of Hope which we can send you via postal mail. If this is something that you would be interested in, please forward your mailing address to patientliaison@mds-foundation.org. In the meantime, you can also view this video https://www.mds-foundation.org/bboh/. We can also help arrange a preferential appointment on his behalf. I hope this information helps.

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