To Stop Getting Sick Consider Adding Immunology to your CLL Team

I am being treated by a great CLL team at Mayo for going on 2 yrs now. What I recently learned after having 3+ sinus infections and pneumonia last year was that I should be talking to the immunology folks. If you are finding yourself getting ill, I would recommend it as the CLL team is focused primarily on your blood health and not on your immune system. This just never occurred to me.

The other very interesting things I learned was that the hematology group, which did put me on IVIG (since my IgG was below 600 and I was getting sick multiple times): 1) they have a stop order once my IgG exceeds 600... and 2) they do not allow SCIG (which you can do at home). In contrast, the immunology team has a target of 900-1100, and is open to considering SCIG. FYI, I don't mind the Gammagard IVIG - it takes about 3 hrs + the 35min drive to the nearest Mayo clinic in the area. The staff at the New Prague location are great, and they recently updated their facility.

I was very happy to learn that my immunology team is also open to prescribing preventative drugs when going on trips. I tried to get meds before going on my trip to Italy last fall (before I met with the immunology team) and was unsuccessful. I ended up in the ER for 3 days with pneumonia. On the bright side, it was quite an experience (though not one I want to repeat :-)!

I hope this helps someone!