You're certainly been in this battle for a long time, jobra818.
Nobody wants to be on long-term steroids and have to deal with their undesirable side effects, but we know that you and your doctors have to pick drugs that will keep your counts up. Let's hope you can find a better combination.
No two stories are the same, but you might want to read the profile of
Andrea Pecor, who has also had AA for more than 20 years. When aplastic anemia is part of your life for so long, it can be hard to remember that you are a person first and a patient second. I hope it helps to have other patients to talk to.
Since you are in Kansas City, it wouldn't be a long trip for you to attend the
AA&MDSIF Patient Conference in Indianapolis this coming July, where you could meet other AA and PNH patients as well as doctors who are experts on these diseases.