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← Return to 200+ transfusions in two years! Rare strain of anemia...advice please
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200+ transfusions in two years! Rare strain of anemia...advice please
Blood Cancers & Disorders | Last Active: Sep 21, 2022 | Replies (31)Comment receiving replies
Hi Lori...Thank you for reaching out...It really means a lot to me and helps to deal with our daily challenges here. I do not have many I can share with as the language barrier is extreme. Bahasa Indonesia is a difficult language for me to learn.
My wife spent 10 days in Covid isolation, came home, began bleeding a day later and just completed five days in a regular ward at the hospital for six transfusions. She is now Covid negative!
When in the Covid ward, the government insurance had reached its limit for that visit and sent her home still in need of more blood and plasma.
She comes home today with a hemoglobin level at 9 right now. I hope and pray she can come home for a long time without need of hospital.
All of this has been very depressing and frustrating.
Life goes on...in one form or another.
Hope all is well,
Ron
Replies to "Hi Lori...Thank you for reaching out...It really means a lot to me and helps to deal..."
Hello Ron and Cilvia, I’ve been thinking of you both so much lately and felt it was time to check in to see if there’s been any positive changes. Has there been any improvement in the frequency of transfusions?
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Ron, I’m sitting here shaking my head as I read your reply. Honestly, I just can’t wrap my head around what you and your poor Cilvia are going through with her having that many continual transfusions, nose bleeds, the lethargy, the uncertainty… One thing is for certain, she’s one heck of a fighter!
You mentioned that Cilvia is still in need of more blood ‘and’ plasma. That tells me the blood she’s receiving has been broken down into the separate components I talked about last time. So if she’s getting red blood cells and plasma, is she also receiving any platelet infusions to help with the clotting??
I’m tossing out a few question for you so we can break this down a little more.
What is her platelet level number on her blood tests?
How did her doctors arrive at the diagnosis of Hemolytic Anemia?
Did any of her other family members have anything similar?
When did this start? Can you think of anything that precipitated this event? Any illness? Hemolytic Anemia can be caused by Malaria, Quinine used to treat Malaria, HIV, Type H influenza.
Was she tested for Malaria or any of these diseases I mentioned?
Does she have an enlarged spleen or liver?
With her current hemoglobin of 9, at least Cilvia must be feeling a little more human, though it’s still low. How is she doing mentally through all of this? I’m amazed with her low blood counts that she had Covid without any serious issues! What’s her white blood count?
Giving you both a big hug of encouragement. ❤️