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Hi to all - I just enrolled in this forum and this is my first post.

I have never had any history of blood problems until recently after I had undergone quad bypass heart surgery and had a ICD (pacemaker/defibullator) implanted. This surgery occurred in June of 2007. A routine blood test by one of the doctors a few weeks after the surgery indicated that my Hgb count was down to 9.6 and I was told to see a hematologist. After a few tests, the hema diagnosed me with AIHA.

The hema put me on 20mg of Prednisone 3 X a day and I was to see him after one week. In that week the Hgb went from 9.6 up to 12.5. At the next visit, the doc said that I should continue the same dose of the Pred for another week and then cut it back to 20mg 2X a day. When I saw him two weeks later, the Hgb had slipped marginally to 12.3. The doc said that he would be very reluctant to keep me on a high dosage of Prednisone and mentioned treatment with Retuximab. He said the treatment would consist of IV infusions once a week for 4 weeks, with a probable follow up in about six months. In the meantime, he has cut the Pred dose back to 20mg once a day to see what happens after another week.

After doing some research on the internet and seeing the success ratio of Retuximab, I am very reluctant to get into this treatment. I am wondering if it would be better to continue with the Predisone in the hopes that the anemia would eventually come to an end. Iíve had no bad reactions to the 60 mg per day except for a little sleeplessness. In fact the Prednisone has been acting as a tonic and I have more energy than Iíve had in twenty years.

When I questioned the doc about the cause of the condition, he said that there was no known cause. One of my thoughts was that the implanted ICD might have triggered my immune system into going out of whack, or possibly just the trauma of undergoing open heart surgery.

I would like some input from folks on this forum who are certainly more familiar with this condition and itís treatment than I am. Any and all advice or suggestions will be greatly appreciated.

Tom F
Hi all;

I'd like to followup my original post and thank the members who responded to my original post.

During my last visit, I asked my original hema doc how sure he was with his dx of AIHA and how much faith he had in the treatment course (Rituxan) he was suggesting. He then insisted that I go to another hema and get a second opinion. He also recommended another doctor and assured me that the second doc would be completely subjective in his opinion and not just mirror his own findings. The second doctor is one of the head honchos of the Hematology and Oncology department in a large local, well respected hospital.

It was the best medical decision that I have ever made. The second doctor agreed that I had a hemolytic condition, but disagreed that it was AIHA. After two weeks of testing, he came to the conclusion that I was having a delayed hemolytic transfusion reaction to one of the four transfusions I had received while undergoing complications of quad heart bypass surgery in June. He pinpointed an anti K antibody in my blood that was reacting with some of the blood cells that I had received in one of the transfusions. He explained that delayed hemolytic transfusion reactions (DHTR) is rarely recognized and sometimes the clinical picture together with a positive antiglobulin tests strongly suggests the onset of autoimmune hemolytic anemia.

I feel that I was extremely lucky and I have been thanking God every day since hearing this good news. I wish that all of the members of this forum could have the same good fortune and be rid of the disease for good. The one bit of advice I will give is - don't be hesitant to ask and go for a second and even a third opinion before taking any drastic steps in treatments. The medical area of hematology is extremely complex and as shown in my case, mis-diagnosing is possible.

God bless you all and good luck - Tom F

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