ITP update nearly 8 years after splenectomy + CVD + risk of malaria

I haven't posted here in a long time and now I have a few topics to ask about! I had my splenectomy in 2009 at age 20 (after steroid treatment only) and my platelets have been high ever since. My most recent platelet count was 450K last week; here's hoping it holds forever. I also discovered that I may have an accessory spleen (per a CT scan in the year after the splenectomy and absence of Howell-Jolly bodies as shown in a 2016 blood test). My new hematologist said that we could consider some kind of additional test to see if there is any splenic function, but that he doesn't necessarily recommend it because I should still go through life as if I have no spleen. As of now, I don't have plans to pursue this further, but I do hope that there is some function.

As mentioned above, I have a new hematologist and he ordered an immunofixation test before my last appointment, which evidently showed common variable immunodeficiency and hypogammaglobulinemia. I had never even heard of these conditions before, but some preliminary online research shows that about 25% of people with CVD may develop ITP. Does anyone else here have any experience with this? Do you get frequent infections? I have had one recurring infection recently, but otherwise, I have been healthy ever since getting my spleen taken out. I have another appointment next week and want to learn more about what I need to do to protect my health in the context of ITP, CVD, and asplenia with possible accessory spleen. Any tips on good questions to ask would be welcome.

Finally, I am going to be working in sub-Saharan Africa this summer for 8+ weeks. Has anyone here successfully traveled to locations with higher risk of malaria and/or meningitis and if so, what kinds of precautions did you take? I am particularly concerned about the risk of contracting malaria without a spleen.

Thanks everyone! Please feel free to ask questions anytime.

I have an immune deficiency with ITP too. I have not however had my spleen removed. Are you seeing an immunologist? What are your IG levels? If your IgG is very low an immunologist would likely have you have regular immunoglobulin infusions to give you some protection. An immunologist would also check to see what your antibody levels to specific diseases are. You should also ask the immunologist bout travelling to Africa and what you should do to prepare.

I've never seen an immunologist; I only just found out about this last week right before going on vacation. IG G is 465 mg/dL (lower end of normal range is 700), IG A is 101 (lower end of normal range is 87), and IG M is 24 (lower end of normal is 26). My hematologist said it didn't necessarily make sense to sit through the infusion treatments if I'm not having tons of recurring infections yet, but I made another appointment to discuss that further. I definitely don't want to take chances before an extended trip away over 5,000 miles away from my usual medical providers.

You definitely want to discuss this with your doctors. Having CVID and being asplenic puts you at risk for infections, especially if you go to places where sickness is prevalent.