← Return to 200+ transfusions in two years! Rare strain of anemia...advice please

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@loribmt

@renaldo Dear Ron, I’m very concerned that there’s been no recent news about your sweet Cilvia. You’re both in my thoughts so frequently and I pray everything is alright. Sending you a quiet hug… Lori

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Replies to "@renaldo Dear Ron, I’m very concerned that there’s been no recent news about your sweet Cilvia...."

Lori. I have been very busy caring for her as she took a turn for the worse.

She could not stop bleeding for over 48 long waking hours. This not only depleted her blood levels but also caused her great physical pain as she must sit upright so as not to swallow the blood. At times she will fall asleep, lean back, and swallow blood. This comes out regurgitated later.

We are now trying to see if we can get diagnosis from The National University Hospital in Singapore. They have written back with a long list of requests before they can take any action. Mayo proved to be totally worthless. They should be ashamed of how useless they can be for international patients who cannot arrive personally.

That all for now. My wife comes home after 12 days in the hospital in the last 14 days!

Thanks for asking. Good to vent!