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

Hello Colleen,

No we cannot come in for an appointment as much as we would like to.

We live in Yogyakarta, Indonesia. I am an American, 75 years old, she is Indonesian, 52 years old. I love her so dearly.

We have been told by doctors she cannot travel in an airplane for fear of bleeding from her nose due to cabin pressure. We also cannot afford such a trip.

Due to sub standards of medical care here there is no way to have her either diagnosed or control her symptoms. She suffers so much.

I am seeking advice. Recommendations of what kind of testing might be done to diagnose. Methods to stop her from bleeding so excessively. She will bleed for over 24 hours at times before it stops, expelling many pints of blood and necessitating emergency and hospital stays for transfusions.

She is not doing very well. For a while she was able to remain home for up to two weeks before needing transfusions. Now it seems we must go every week and this involves 4-6 days in the hospital.

She is a very positive woman, Never had complained or felt any sorrow for herself. She is beginning to show signs of becoming so weakened by her condition that she is becoming somewhat negative. This scares me as I am the only one here to care for her at home.

We have some money that I would gladly spend to get her help if I could get her to the United States. I know it would probably not be enough to cover the high medical expenses found in the states, but I would spend every penny to help her and go broke.

Are there any foundations in the states that help people like her? Endowments?

If I lose her, part of me will die.

Warm regards,
Ron Piltzer

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Hello, my name is Ron. My wife, Cilvia, and I live in Yogyakarta, Indonesia. She is 52, I am 75.

Cilvia has been dealing with a very rare strain of hemolytic anemia for four years.

So far it has caused her to lose sight in her left eye, she has fainted a couple times, her hemoglobin level gets very low, shows signs of weakness, she bleeds excessively from her nose for hours on end, she bruises easily, she has had over 200 blood transfusions and needs hospitalization twice a month.

We live in Indonesia where health care is limited in scope and ability to cure or control. They do not even have the ability to diagnose.

They have done embolism treatment, packing of nose, some radiation. None have worked to stop the bleeding. She will have blood clot in her nose or sinus and to get it out requires a lot of nose blowing, making her begin to bleed incessantly.

We are trying to reach out for advice on how to diagnose and control this bleeding as it makes here hemoglobin level down into dangerous zone.

I have some money in a retirement account. I know it would not be nearly enough to pay out of pocket for healthcare in the states. I was wondering if anyone knows of any foundation or endowments that help pay for such care for those who cannot afford it?

Please help if you can.

God Bless You,
Ron

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Hello, my name is Ron. My wife, Cilvia, and I live in Yogyakarta, Indonesia. She is 52, I am 75.

Cilvia has been dealing with a very rare strain of hemolytic anemia for four years.

So far it has caused her to lose sight in her left eye, she has fainted a couple times, her hemoglobin level gets very low, shows signs of weakness, she bleeds excessively from her nose for hours on end, she bruises easily, she has had over 200 blood transfusions and needs hospitalization twice a month.

We live in Indonesia where health care is limited in scope and ability to cure or control. They do not even have the ability to diagnose.

They have done embolism treatment, packing of nose, some radiation. None have worked to stop the bleeding. She will have blood clot in her nose or sinus and to get it out requires a lot of nose blowing, making her begin to bleed incessantly.

We are trying to reach out for advice on how to diagnose and control this bleeding as it makes here hemoglobin level down into dangerous zone.

I have some money in a retirement account. I know it would not be nearly enough to pay out of pocket for healthcare in the states. I was wondering if anyone knows of any foundation or endowments that help pay for such care for those who cannot afford it?

Please help if you can.

God Bless You,
Ron

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Hearing the reports of your experience in Jakarta is so disappointing. The conditions you report are really distressing so I can understand your reluctance for followup there! 😢
I really hope you’re able to secure a visit for your wife at a clinic in Malaysia. You’re so far from the US that I worry the trip here would be so costly, and very difficult for your wife in her condition.
You’re a wonderful, loving husband and I can see you’re literally doing everything possible to find a diagnosis and help for your sweet wife. It’s heart breaking and never easy when the people we love are going through the worst times imaginable and we feel so helpless.

I want to follow you and your along on her journey so please reach out anytime. Being a caregiver is so difficult. Do you have any family members nearby who can offer some moral support or relief for you and Cilvia?

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Hello @renaldo. You will notice that I have removed your personal contact information from this post. I did this in an effort to protect your privacy from spammers. You are free to share in the personal messages with other members as you see fit.

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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

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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.

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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

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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

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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.

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