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

Discussion
Comment receiving replies
@renaldo

Hi Lori.

The only family members in offering some support online are her daughter in Spain, and mother in Jakarta.

I fear my wife may die soon. We just cannot get the bleeding stopped and it now occurs so frequently.

I cannot express how grateful I am for your kindness. It helps to talk about what is going on with her. A good release of emotional buildup.

Cilvia came home two days ago after 6 transfusions and none days in a Covid isolation ward. Because I could not visit, it was a living nightmare. She began to bleed again today and may need readmittance tomorrow. She will, once again, be isolated as she was discharged still positive.

Just a small example of care here.

Thank you again. I will post updates.

God Bless You,
Ron

Jump to this post


Replies to "Hi Lori. The only family members in offering some support online are her daughter in Spain,..."

Forgot...the government health care policy she has, has care limits.

They stopped services after 6 transfusions and released her with a low hemoglobin level.

I fear, because of budget cuts, services will be cut even more.

My wife is a very private woman. We were getting a private room but that is ending soon. She, in the future, must share. In this country whole families often move in with their loved ones, being disruptive, dirty, annoying.

Aw Ron, I’m so sorry to hear Cilvia had yet another bout with this continued bleeding. That sweet lady and what a vicious cycle of transfusions and bleeding. I can’t even imagine how exhausted and ill she must be feeling all the time.

I really know nothing of her disease other than what I’m researching for you. But I do know that when my blood numbers were low after chemo treatments and I would have these “someone turned on the faucet” nosebleeds, besides receiving blood transfusions I also had a bags of platelets when my blood wouldn’t clot.
Is Cilvia receiving “whole blood” transfusions? They aren’t very common. In the US blood that’s collected from donors is broken down into the 4 various portions of White Blood Cells, Red Blood Cells, Platelets and Plasma. Each can be given on their own for the patients need.
It would be interesting to find out if Cilvia is receiving only red blood cells in her transfusion. If that’s the case, they won’t have any clotting ability and she’ll just continue to bleed out.
That would be a good question to ask her doctors.

Do you know if she is given platelets to help her blood clot?

Hi Ron, it’s been a few days and I wanted to check in with you to see how Cilvia is doing. I think of you both so often and hoping she’s getting relief. You too! The stress you’re feeling must be overwhelming. Sending you both a big hug.