Common Variable Immune Deficiency
Question: I have the chronic illness Common Variable Immune Deficiency. I've been on infused Gammagolbulin for over 15 years. I was part of the initial U.S. trials and I've been infusing at home for 8 years. From the time I started my infusions until January of last year I did very well with no hospitalizations and no serious infections. However, this past year has been a disaster, as I have been constantly ill, having cough we can't figure out, resistant to almost everything, pneumonia, multiple sinus infections, and a positive blood culture for endococus. My antibiotic medications totaled over $4,000 last year. My doctor has a major HIV population and about 25 patients with CVID.

When do I decide that this is not working and leave town for a second opinion? Is it of any use to have someone else review the situations and see where we are? Do I take all my CAT scans, MRI's, labs, records, etc, or do I need to have them retaken at the other institution? How do I keep my relationship with my doctor intact?

Answer: The best of us sometimes gets tunnel vision. This can be particularly true if you have been taking care of the same person for years and a new problem arises. A second opinion is always helpful, if nothing more than to re-secure your opinion of your primary physician. I never mind if patients desire a 2nd opinion and any secure physician won't either. Indeed, good ones will line up the opinion for you. I doubt that you'd need to leave Cleveland. Just see another competent physician and let their mind peruse your data. Take the films with you since repeating them is a waste. Maybe you don't want to focus entirely on the immune deficiency because another problem might have arisen. I would find a community physician who is a good clinician, regardless of their academic credentials.
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