MDS is a bone marrow failure disorder
MDS is a blood cancer
Learn More >

Welcome to the MDS Patient Message Board Post New Thread

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.

Too Many Transfusions HGB?

Home Demo forums Patient Message Board Too Many Transfusions HGB?

Viewing 8 posts - 1 through 8 (of 8 total)
  • Author
    Posts
  • #18984
    Bluyz1966
    Member

    My Mom’s onc. gave her a blood transfusion last week when her HGB was down to 8.8. Her HGB was up to 10.0 on Monday, but, dropped to 8.8 again today. He is not going to give her a transfusion this time because he said too many transfusions could be dangerous? I need some info on that. Any help is appreciated.

    Thank you,
    Linda

    #18985
    Dick
    Member

    Linda

    I’m sure you will get lots of replies from your post. I’m sure you will hear others say “get a second opinion”

    Today I had my 86th transfusion since Dec of 2003. My count runs from 8 to 10 and below 9 usually signals the need for another TX. I get a TX about every 28 days. Of course there is danger and in everything related to MD but I just don’t think ‘frequency’ is very close to the top of the list. Biggest worry is iron build up after perhaps 10 transfusions but the new Exjade can handle that. Could well be something else is a factor but I’d sure hope you think about a second opinion . . . hopefully from a Center of Excellance Hospital

    Dick

    #18986
    jaxem
    Member

    linda
    like dick states, get a 2nd opinion.

    #18987
    covergirl
    Member

    Linda,
    Please get a second opinion and maybe a doctor more versed in treatment of MDS patients. I’ve been taking txs every 4-6 weeks since 3-05.

    Letting your Mom’s HGB get too low could present other problems as well.

    Best to you both.

    #18988
    Bluyz1966
    Member

    Thank you for your replies. Anyone from the Chicago area? We are looking at the University of Chicago for a second opinion.

    She questioned the tx this morning and they did a cross match for tomorrow. It is time for a second opinion and I appreciate you all reminding me of the importance of that.

    Bless you all.

    Linda

    #18989
    AlexD
    Participant

    Linda,

    I have been receiving blood transfusions since 1998. I have never had any issues with it being called ‘dangerous.’

    Though, there are inherent risks of course, there ought to be no large ordeal getting some blood for your mother.

    In fact, I had one today–4 units. Once my HGB goes below 10.5, I receive 4 bags; below 11.5, two bags.

    For a second opinion, I’d have to suggest coming to Cleveland. There are some fantastic hospitals here–University and the Cleveland Clinic.

    If your mother isn’t feeling well and would benefit from a transfusion, don’t be bullied into waiting for her HGB to drop. My former doctor would do this to me.

    Kind regards,
    Alex

    #18990
    Bluyz1966
    Member

    Alex,
    You are only 18 years old? You have been through so much in your young life. I bet we could all learn something from you.

    Thanks for the post. University of Chicago is closest to us, about 1.5 hours away. We are looking there. Will keep you all posted.

    Thanks!

    Linda

    #18991
    jga_socal
    Member

    Some great info can be obtained from the National Comprehensive Care Network . Particularly the pdf: NCCN Clinical Practice Guidelines in Oncology for Myelodysplastic Syndromes .

    To much blood transfused in one sitting can produce lethal blood clots. For this reason doctors dont like to give more than 2 units at one time. Younger people can tolerate more, older people less. I’m guessing the Doc wants to wait at least 2 weeks before transfusing another 2 units into your Mom. By the way, the most a person needs, if their own rbc production has totally shut down, is 1 unit a week, safely transfused at 2 units every 2 weeks.
    Its a little odd to have an Hgb count drop from 10.0 on Monday to 8.8 two days later. A normal decline during a 2 day period for someone with no rbc production would be around .12 Hgb points per day, so .24. Your Mom’s Hgb decline was 5 times that. Normal Hgb die-off occurs at a constant rate because the Hgb is created at a constant rate. However, since donated blood may have been sitting around for up to 1 month, (up to 25% of the transfused Hgb could already be dead), and the donated blood is mixing with other previously donated blood, the result is an inconsistent rate of rbc die-off. Your Mom may experience periods of sustained Hgb levels and subsequent periods of rapid declines in Hgb levels.

Viewing 8 posts - 1 through 8 (of 8 total)

Register for an account, or login to post to our message boards. Click here.

  • You must be logged in to reply to this topic.

Login

Login

Search Forums

Review answers to commonly asked questions or get answers to your questions from an MDS expert