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Unsure of classification and HGB highs and lows cycle

Home forums Patient Message Board Unsure of classification and HGB highs and lows cycle

This topic contains 2 replies, has 3 voices, and was last updated by  Kathy Stermer 1 week, 2 days ago.

Viewing 3 posts - 1 through 3 (of 3 total)
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  • #46391

    janice wilson
    Participant

    Hello everyone — My husband began his journey last April 2018 when what seemed like out of the blue he was so fatigued he could barely walk up a set of stairs, he looked ungodly white and through his GP was recommended he go see a hematologist. He had anemia of chronic disease. At that appointment he had 6.3 Hemaglobin and had to get three unit of blood immediately. We had no idea why this had occurred and what was to lie ahead. Since that time he has had 10 blood transfusions, countless shots of Aranesp, IVIG, Prednizone (steroids) some back to back some given one off. Right now we are in a bit of a testing situation to see if Aranesp is helping or not. Because we aren’t sure if in addition to not having a blood production problem we might also have a destruction problem. Next weeks CBC should tell us if Aranesp is or isn’t working. He has been diagnosed with low dose MDS a couple of months ago. In looking at all the classifications he most closely aligns with single lineage dysplasia (we guess). He is 71 years old and other than this condition is in really good health. We are wondering if others with maybe the same condition are seeing two/three months of high (12ish) HGB followed by low HGB for a couple of months. Right now he’s at 9.3 HGB which we haven’t seen since Jan. 24. Thank you for listening and would love to hear opinions. Best Janice and Russ Janice Wilson

    #46474

    mdsfound
    Moderator

    Hi Janice, Thank you for your post with information regarding your husband’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. 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/. I hope this information helps. If we can be of any further assistance, please do not hesitate to contact us.

    #46478

    Kathy Stermer
    Participant

    Agree with above advice and know from my own experience with 13 units of blood under my belt since December if your marrow is not making healthy red blood cells for whatever reason, the blood is a bandaid at best. For each unit typically gets a one gram increase in numbers but I’ve had instances where I get blood and back down the next week. Labs are important but how one feels is most crucial. The body can be very good at adapting to circumstances. I’ve been out snow blowing my property only to go in and find my hgb is 7. If I feel like crap, I go in and get checked.

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