Connect
← Return to 200+ transfusions in two years! Rare strain of anemia...advice please
Discussion
200+ transfusions in two years! Rare strain of anemia...advice please
Blood Cancers & Disorders | Last Active: Sep 21, 2022 | Replies (31)Comment receiving replies
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
Replies to "My wife has been dealing with a very rare strain of hemolytic anemia for four years...."
Connect
@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?