Hi Vic,
Welcome! Currently my husband continues to get 2 units PRBC every 3 weeks or so right now. Over the summer we made the decision to switch from Mayo to the Cleveland Clinic (thanks to Ron
!) Last year my husband did have his spleen removed, it was hoarding the red cells, and after that surgery we had almost 6 months transfusion free! Unfortunately at the start of the summer he bacame transfusion dependant again. After visiting Dr. M at the Cleveland Clinic we decided to follow a few "off" label treatments to cross a few things off the list.
First stop, needed a new port installed, but before that could happen we ended up with a bit of a lengthy hospital stay due to a strange infection. So we were a bit delayed in getting this next round of treatment started. He is now doing IVIG to see if that might help at all (so far no change, but not too surprised, they knew it was a long shot). Next up will be prednisone again sometime in the new year with a combo of Cytoxin.
He is taking Exjade again, iron is off the charts once more. We found it very helpful going up to Cleveland - well worth the trip. Gave us a lot more hope in a time we were starting to give up. Also, went to the conference in Tampa, that helped even more to give my husband a lot of hope in seeing all the survivors.
So while we are still searching for the combo that might provide some relief from the transfusions, Dr. M at the Cleveland Clinic and his team have been fantastic in serving up options and always there to help. Feel free to email me anytime - happy to give any info or support!