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

Posted by Ron and Cilvia @renaldo, Aug 18 10:45am

My wife's illness and symptoms are to complex for 70 characters.

We desperately need advice/support.

Interested in more discussions like this? Go to the Blood Cancers & Disorders group.

Hi @renaldo, welcome. It sounds like you are looking for medical consultation for your wife. If you would like to request an appointment at Mayo Clinic, please click this link: http://mayocl.in/1mtmR63
You can call or fill out the online form and then discuss your request with the appointment coordinator.

If you are looking for support from fellow patients and caregivers and to ask them questions, then you've to the right place. Here on Mayo Clinic Connect we're a community of patients and caregivers sharing our stories and giving and getting support.

What type of anemia does your wife have? How is she doing?

REPLY
@colleenyoung

Hi @renaldo, welcome. It sounds like you are looking for medical consultation for your wife. If you would like to request an appointment at Mayo Clinic, please click this link: http://mayocl.in/1mtmR63
You can call or fill out the online form and then discuss your request with the appointment coordinator.

If you are looking for support from fellow patients and caregivers and to ask them questions, then you've to the right place. Here on Mayo Clinic Connect we're a community of patients and caregivers sharing our stories and giving and getting support.

What type of anemia does your wife have? How is she doing?

Jump to this post

Need to advice or suggestions of care available at Mayo please.

REPLY

My wife 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 control this bleeding as it makes here hemoglobin level down into dangerous zone.

We were told she cannot fly to another country for care as she, most likely, would bleed in flight from the air pressure in the cabin. We are hoping for some sound advice.

Please help if you can.

God Bless You,
Ron

REPLY
@renaldo

My wife 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 control this bleeding as it makes here hemoglobin level down into dangerous zone.

We were told she cannot fly to another country for care as she, most likely, would bleed in flight from the air pressure in the cabin. We are hoping for some sound advice.

Please help if you can.

God Bless You,
Ron

Jump to this post

@renaldo, Hello Ron, what a struggle this must be for you and your wife! Over 200+ transfusions over the past 4 years, that’s about once per week? That poor dear! It must be hugely frustrating not to have access to good quality heath care. From what I’m reading, your wife’s anemia might be treatable once the underlying condition that’s causing it is diagnosed.

Hemolytic Anemia comes in a couple of forms. One is inherited and the other can be from external causes such as illness or medication.
Treatments are usually blood transfusions, which your wife is currently getting. But because of an underlying condition her blood cells are being destroyed faster than her body can reproduce them so that’s not helping her long term if this has been going of for 4 years.

Other treatments, such as Corticosteroid medicines are given.
Treatment to strengthen your immune system (using intravenous immune globulin) (IVIG treatments)
Rituximab
In more severe cases, the following treatments may be needed:

Surgery to remove the spleen
Medicine to reduce the strength of your immune system (immunosuppressive therapy)

But all of those treatments require finding the underlying condition.
I’m posting several links below from various trusted medical providers in the US in hopes of getting you some information regarding the disease and some of the treatments. Hopefully some of the articles will help give you an idea of what direction to take with your wife to get treatment.

“Hemolytic anemia is a blood disorder that typically happens when your red blood cells break down or die faster than your body can replace them with new blood cells. People may develop hemolytic anemia by inheriting genetic conditions that cause anemia, certain infections and certain medications. Healthcare providers treat this condition by treating the underlying issue” (Cleveland Clinic)
https://my.clevelandclinic.org/health/diseases/22479-hemolytic-anemia
~~~
https://www.hopkinsmedicine.org/health/conditions-and-diseases/hemolytic-anemia
~~~
https://www.mayoclinic.org/diseases-conditions/anemia/symptoms-causes/syc-20351360
In some of the articles I posted, it also discusses some of the blood tests and other procedures used to diagnose this disease. What type of testing has your wife had so far?

REPLY
@colleenyoung

Hi @renaldo, welcome. It sounds like you are looking for medical consultation for your wife. If you would like to request an appointment at Mayo Clinic, please click this link: http://mayocl.in/1mtmR63
You can call or fill out the online form and then discuss your request with the appointment coordinator.

If you are looking for support from fellow patients and caregivers and to ask them questions, then you've to the right place. Here on Mayo Clinic Connect we're a community of patients and caregivers sharing our stories and giving and getting support.

What type of anemia does your wife have? How is she doing?

Jump to this post

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

REPLY
@loribmt

@renaldo, Hello Ron, what a struggle this must be for you and your wife! Over 200+ transfusions over the past 4 years, that’s about once per week? That poor dear! It must be hugely frustrating not to have access to good quality heath care. From what I’m reading, your wife’s anemia might be treatable once the underlying condition that’s causing it is diagnosed.

Hemolytic Anemia comes in a couple of forms. One is inherited and the other can be from external causes such as illness or medication.
Treatments are usually blood transfusions, which your wife is currently getting. But because of an underlying condition her blood cells are being destroyed faster than her body can reproduce them so that’s not helping her long term if this has been going of for 4 years.

Other treatments, such as Corticosteroid medicines are given.
Treatment to strengthen your immune system (using intravenous immune globulin) (IVIG treatments)
Rituximab
In more severe cases, the following treatments may be needed:

Surgery to remove the spleen
Medicine to reduce the strength of your immune system (immunosuppressive therapy)

But all of those treatments require finding the underlying condition.
I’m posting several links below from various trusted medical providers in the US in hopes of getting you some information regarding the disease and some of the treatments. Hopefully some of the articles will help give you an idea of what direction to take with your wife to get treatment.

“Hemolytic anemia is a blood disorder that typically happens when your red blood cells break down or die faster than your body can replace them with new blood cells. People may develop hemolytic anemia by inheriting genetic conditions that cause anemia, certain infections and certain medications. Healthcare providers treat this condition by treating the underlying issue” (Cleveland Clinic)
https://my.clevelandclinic.org/health/diseases/22479-hemolytic-anemia
~~~
https://www.hopkinsmedicine.org/health/conditions-and-diseases/hemolytic-anemia
~~~
https://www.mayoclinic.org/diseases-conditions/anemia/symptoms-causes/syc-20351360
In some of the articles I posted, it also discusses some of the blood tests and other procedures used to diagnose this disease. What type of testing has your wife had so far?

Jump to this post

Thank you for your response Lori.

I will go to the sites you posted to see if I can gather some information to pass on to her doctors here.

Do you know of any foundations or endowments that would help us pay for medical services for her should I be able to get her to the United States safely? I have some money in my retirement and would spend every penny but I know it will not be enough to pay for the outrageous medical expenses so common in the states now.

We need help as her condition worsens.

My wife's name is Cilvia, she is from Sumatra and 52 years old.
I am from Los Angeles, have been living in Indonesia now for 10 years and am 75 years of age.

The warmest of regards,
Ron

REPLY

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

REPLY
@renaldo

Thank you for your response Lori.

I will go to the sites you posted to see if I can gather some information to pass on to her doctors here.

Do you know of any foundations or endowments that would help us pay for medical services for her should I be able to get her to the United States safely? I have some money in my retirement and would spend every penny but I know it will not be enough to pay for the outrageous medical expenses so common in the states now.

We need help as her condition worsens.

My wife's name is Cilvia, she is from Sumatra and 52 years old.
I am from Los Angeles, have been living in Indonesia now for 10 years and am 75 years of age.

The warmest of regards,
Ron

Jump to this post

Dear Ron and Clivia. My heart is aching for concern over your wife’s condition. I really don’t know of any agencies or foundations to assist you to get to the US.

Since you provided @colleenyoung with your location of Yogyakarta, Indonesia, I looked up nearby hospitals in larger cities. You’re on the same island as Jakarta. That being the capital, has quite a few major hospitals from what I found.

Getting into a larger clinical setting, preferably a teaching hospital associated with a university would be very beneficial for your wife. There they would have more sophisticated technology to help diagnose your wife’s condition and potentially find a suitable treatment plan for her. It would be about 8 hours drive or 1.5 hour flight from your home instead of flying 14 hours or more to the US.

Have you tried getting a referral to a clinic in Jakarta? Your local doctors may work with you to help secure an appointment for you wife. What do you think?

REPLY

Hello Lori,

About three years ago we had her emergency airlifted to the Medistra Hospital in Jakarta. Here inYogyakarta the bleeding from her nose continued after it had been packed two times.

Medistra was recommended as one of Jakarta's best, most advanced hospitals. We found that the ENT in charge wanted to, and did the exact same procedures at those in Yogyakarta, stopping the bleeding for a short enough time to get her home on a train.

The attached photo is her being flown to Jakarta.

Here in Yogyakarta we used to go to a University hospital, Dr. Sardjito Hospital, reputed as one of Indonesia's best. It was a joke. Emergency was dirty, people were exposed to one another, some died what appeared to be unnecessarily from lack of care.

Overall, health care here is so backward, I do not believe that there is any hospital in Jakarta that would be any better than Pantih Rapih Hospital that we use now.

I have had enough experiences both with the public and private hospitals and care to write a book that would divulge some of the horrors I have witnessed the past four years.

Malaysia is considered to be pretty much up to good western standards. It is relatively close to us. I am also contacting hospitals there to see if there is some glimmer of hope that they could diagnose and control her bleeding.

Thank you so much for your reply, it is greatly appreciated.

Regards,
Ron

REPLY
@renaldo

Hello Lori,

About three years ago we had her emergency airlifted to the Medistra Hospital in Jakarta. Here inYogyakarta the bleeding from her nose continued after it had been packed two times.

Medistra was recommended as one of Jakarta's best, most advanced hospitals. We found that the ENT in charge wanted to, and did the exact same procedures at those in Yogyakarta, stopping the bleeding for a short enough time to get her home on a train.

The attached photo is her being flown to Jakarta.

Here in Yogyakarta we used to go to a University hospital, Dr. Sardjito Hospital, reputed as one of Indonesia's best. It was a joke. Emergency was dirty, people were exposed to one another, some died what appeared to be unnecessarily from lack of care.

Overall, health care here is so backward, I do not believe that there is any hospital in Jakarta that would be any better than Pantih Rapih Hospital that we use now.

I have had enough experiences both with the public and private hospitals and care to write a book that would divulge some of the horrors I have witnessed the past four years.

Malaysia is considered to be pretty much up to good western standards. It is relatively close to us. I am also contacting hospitals there to see if there is some glimmer of hope that they could diagnose and control her bleeding.

Thank you so much for your reply, it is greatly appreciated.

Regards,
Ron

Jump to this post

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?

REPLY
@renaldo

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

Jump to this post

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.

REPLY
@renaldo

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

Jump to this post

Hello @renaldo. I can feel the desperation in your post with regard to seeking medical care for your wife, who you obviously love very much.

I am guessing in the last four years you've researched and done nearly everything possible, however, I wanted to share this information with you to see if there is anything that stands out as something you haven't addressed or tried just yet, while you work on getting your wife the additional medical care you wrote in about.

– Anemia: https://www.mayoclinic.org/diseases-conditions/anemia/symptoms-causes/syc-20351360

These are what stood out to me:
– iron/vitamin deficiency
– gut health/intestinal disorders

Have she addressed these through diet and/or supplements?

REPLY
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