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

Oh gosh, @ilean. You are going through a lot. I hope you have better luck being seen at Baylor. As you can see from the long wait times and lack of appointment availability, hospitals across the nation are really strapped. If you were seeking an appointment at Mayo Clinic's Post-COVID Care Clinic, the denial is likely due to capacity limits. There is simply more demand for appointments that availability. COVID has wreaked havoc on the health care system.

You've mentioned both GI and heart issues related to post COVID. You may wish to join these discussions:
- Covid Recovery: How can I manage GI issues? https://connect.mayoclinic.org/discussion/covid-recovery-and-gi-pain
- Anyone experiencing post covid heart issues? https://connect.mayoclinic.org/discussion/post-covid-heart-issues/

@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
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https://www.hopkinsmedicine.org/health/conditions-and-diseases/hemolytic-anemia
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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?

I was diagnosed with hemolytic anemia 17 years ago. Mine was due to my spleen removing red blood cells too soon. Even though I responded well to steroids, I didn’t want to live on steroids forever. I opted to have my spleen removed. Everything went well and anemia resolved.

Hi @fergie01 Welcome to Connect and thank you for sharing the successful outcome of your splenectomy. Has that completely resolved your hemolytic anemia? Are there any precautions you have to take living without a spleen? Any medications?