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How he feels…….

Home Demo forums Patient Message Board How he feels…….

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    My husband was diagnosed possibly with MDS back in November, he will be having a repeat BMB etc next month. But my question is is how does someone feel when their hgb is 7.8? I have heard comments from others that he looks terrible. He feels terrible (shitty as he puts it). He still is working, but very tired.



    for me, 7.8 is not so bad, maybe just because i am young(41), my lowest point is 5.8, and i am easily get tired on that point, but i even don’t know at then, and i was working and still driving…


    Hi Barb, I can’t speak personally as to how it feels but I can relate to you how mom would feel. When she passed her hemo was 6.9, they had just ordered some blood for her, she didn’t make it. We could always tell when it was getting close to transfusion time, she would become very breathless, very difficult to move, tired. She always tried to fight it though, but, it always won.
    Her main problem with the low hemoglobin was breathing, she said it felt like she couldn’t take a good deep breath.



    Hi Barb,
    Seems every one has a different threshold for feeling the effects of low HGB.
    The docs usually order a TX at 8.0
    I feel rotten when I get to the low 10s.
    My mom was unconscious at 5.7.
    Once i went on Procrit my HGB bounced up to 11.5-11.9 after 2 weeks. Was in the 12s after 7 days.
    This might be a good time to discuss his options with a doc.


    Barb, what is your husbands age and classification?


    Hi Barb

    When I get to the high 9’s I feel lousy. I get dizzy when I stand up from sitting or lying down. All very unplesant. When I get to the mid 9’s, my wife starts to get concerned because I look as bad as I feel.

    Procrit did nothing for me as far as I can tell. My numbers did not increase. Actually since I have been off it they have been a little higher, last week hit 4.0! I agree with Neil, let the Dr. offer some options. There are a couple and there are always transfusions. I would not be too quick to take the latter because, as I am learning, there might be some issues with transplants, if that becomes an option.


    Barb..My husbands dr. believes in keeping my husband at 8 or above. Finally she has seen that he can not function under a 9. So she now knows if he is to have any kind of life he must be at the very lowest a 9. Helen


    Hi Barb,

    I’m sorry your husband is feeling so tired….a hemoglobin of 7.8 is pretty low. Has he tried Procrit? Take care, Jody



    I’m similar to Neil. After my HBG gets below 10 I can not function properly. When mine got to 7.5 my heart was beating so fast that I had a hard time sleeping. Had to get a transfusion to make it come up. Later, Thalidomide helped.


    My mom gets transfused when around 8…when she first started getting transfusions she really couldn’t tell she needed them. But the dr. said it is hard on her heart and other organs to go much lower than the 8. Her heart beats really fast and she gets a thumping in her ear when she is in the 8’s. Deb


    Bob has been Tx free for over a year, His HGB ranges in the Mid 10’s to mid 11’s. Doctor feels this is his threshold. He gets weekly procrit.
    8.0 was the cutoff and the doc would order the tx we are so greatful this has not been needed.
    Bob is pretty tired, but we are thinking it is the vidaza.


    Barb, Another reason this disease is so complicated-everyone is different. Like Deb’s mom, my mom would get transfuses around 8 and she couldn’t tell she neede them either. She would just say she was feeling a little tired.



    My “magic number” is 7. I exercise regularly and try to maintain exercise even when the counts drop a bit, which I think helps. Much below 7, though, and I wipe out. It is very different for each person though.


    He is being transfused today, which Im glad. I am hoping this will pick him up. I have noticed that his platelets have been dropping also. They were a month ago 189 and yesterday was 135. We will see. My husband hasn’t been classified yet, he is 44 years old. Thank you for your replies, I appreciated it very much.


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