Gilbert's and Hemolytic Anemia
I was diagnosed with hemolytic anemia after my galbladder removal and a surgeon's refusal to do a splenectomy on my enlarged spleen because i was young. More recently i had a genetics test that found gilbert's syndrome. I've been told the whole time that both of these are benign and not a problem.
However over the course of a few years i've gone from being super active but a little winded going up hills to being unable to walk a few blocks. I use a cane for stability and am dizzy often. I've been hospitalized for hemolyzing to a dangerous degree once and have started semi regular transfusions.
My hemoglobin is never naturally above a 10 (most recent was 8.6 with a rbc of 2.68, and doctors said it was stable), and my bilirubin is high but ferritin is just a bit above normal.
I've had suspicions of chronic inflammation but rheumatologists refuse to see me, and i don't know where to go from here. I'd like my life back, but everyone tells me these things should have little impact on my daily life. Yet I struggle to do basic tasks and work if it requires physical exertion, and i often pay for pushing myself the next few days. I also fractured my sternum apparently doing a mundane task and slipping?? It has me worried.
Is this really just the way it is? I'm on supplements (b12, folic acid, calcium) and am still fatigued, i don't feel steady except the day of a transfusion at best; i don't feel like anything has helped. Anyone with similar experiences?