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Low hemoglobin and enlarged liver and spleen

Posted by klh1107 @klh1107, Feb 3, 2024

Hi - I'm not 100% sure that I'm posting to the correct group. I've been struggling with my hemoglobin for the last year. The lowest was 6.5 which led to blood transfusions and now a new antibody. I've been through iron infusions, B12 shots and at times my hemoglobin will just up to around a 9 then within a week or two it is back to 8, then 7 and then 6ish to where another transfusion is needed. I now have just found out that my liver and spleen are enlarged. I'm so tired of being tired. I'm so tired of constant blood tests. I'm tired of constant tests without a lot of answers. I also have a hiatal hernia which was supposed to be corrected on Dec 29(surgery) but that is when they found out about my liver/spleen. Has anyone had a similar situation or advice? I do have a hematologist oncologist that I am seeing again on Feb 14. Any information or advice would be greatly appreciated. Thanks!

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klh1107 | @klh1107 | Feb 26 6:39pm
In reply to @sherrylou "I was recently diagnosed by a bmb on 12/26/24 but have had anemia, low hgb for..." + (show)
@sherrylou

I was recently diagnosed by a bmb on 12/26/24 but have had anemia, low hgb for years.
I had my 1st treatment of Reblozyl on Jan 3/2025. My hgb went from 10.4 up to 12.0 within a week. I was just checked yesterday & hgb has climbed up to 12.8! Highest it's ever been-ever! So that with only the 1 treatment! I go back every 3 weeks to check my blood counts. If the hgb drops to 11 or less I will get another Reblozyl treatment. So far, it really seems to be a miracle drug for anemia. The side effects I had from the one treatment was extreme fatigue & dizziness. Thank you for the links. I will definitely check them out.

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I'm going to ask my DR about that medication. Thanks!

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1 reply
sherrylou | @sherrylou | Feb 26 6:49pm
In reply to @klh1107 "I'm going to ask my DR about that medication. Thanks!" + (show)
@klh1107

I'm going to ask my DR about that medication. Thanks!

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You are welcome. I hope it works out for you too.

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dancouclanel4 | @dancouclanel4 | Feb 27 9:19am

I experienced similar hgb factors rqr blood and platelets transfusions. It was a journey to find the sweet spot of IV vidaza complemented with Venetoclax that eventually brought my factors to acceptable levels. I concur with your comments of being tired and passive. It was not fun.
Get another opinion and find a support group. Research your condition then try to exercise. Know that your life has changed and you must adjust to your body's dilemma.
Good luck.

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albertedward | @albertedward | Feb 27 10:11am

I have had PV for over 2 years and they found my liver and spleen was enlarged then but I keep on ticking hoping one day they go back down
Take Care

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