I’m Too Expensive to Live

If you didn’t know,  I have a condition called Common Variable Immunodeficiency (CVID).  My body doesn’t produce enough of the immunoglobulin that allows the body to produce antibodies to infection.  Before I was diagnosed, I had regular bouts of bronchitis and pneumonia as well as an ovarian abscess that nearly killed me.  Even after I was diagnosed, it had not been impressed upon me, how important it is to stay current on my infusions.  When I moved to North Carolina, I couldn’t afford to continue them, and ended up in a coma for three weeks with encephalitis.  I wasn’t supposed to survive.

My immunologist is the person who prescribes my immunoglobulin, which I now infuse on my own, at home, once per week. Before I was assigned to Dr. Lugar at Duke in Durham, I didn’t know anything about this condition. She explained so much to me. She set me up with NuFactor, a specialty pharmacy that has made my infusion process so efficient that I’ve been able to take it with me on vacations and it barely makes a hiccup in my vacationing. I wrote her so many thank you messages when I was under her care. And, under her care, I haven’t been hospitalized even once.
So, before I left NC, I made sure to have an immunologist established here. I had gone to the Primary Immune Disease website to get one recommended by them. They recommended Maria Reyes at Northern Nevada Allergy and Immunology, so I asked my doctor to refer me to her.
Northern Nevada Allergy and Immunology (NNAI) got the referral, but assigned me to a different immunologist, named Nugent. I assumed that since they were in the same practice, they’d be of similar quality.

The firs thing he did was keep me waiting for an hour and a half, 45 minutes of which were sitting in his exam room, listening to him shoot the breeze with the patient in the next room. Seriously, they were talking politics and sports. I didn’t realize that was actually him, until I got up to walk out of the office, and a nurse told me “he’s finishing up, now.”

When he came in, he commented on the size of my file. He’s not the first to do that. But then we got on the subject of my specialty pharmacy, and he immediately started trying to discourage my desire to stay with them. “Oh, those small, fly-by-night companies, can disappear in the night and you’ll never hear anything about it. Some of them end up in jail.”

He’s talking about a company that got my life-giving mediation to me overnight, without a hitch, and at no cost to me. They called me several times to update me on the process and called me again within hours of delivery to make sure I’d gotten it. As long as I need this medication, they will be my specialty pharmacy.

We didn’t spend a whole lot of time discussing my health or numbers. We spent a lot of time talking about how expensive it is to be an immunologist, and how he’s basically doing it as a community service, and how eventually, their practice won’t be doing this anymore, because, since insurance companies only look at costs and not at conditions, he doesn’t look as good as those who only do allergy and no longer do immunology. From what he said, when his organization stops doing immunology, there will be none in the Reno area.

I honestly felt like he was telling me that it was too expensive to keep me alive.

I felt a kind of frustration and helplessness like I haven’t felt since I was a teenager. I wanted to cry. I wanted to get up and run out. I even, for a moment, thought of going back to NC, so that I could be under the care of Dr. Lugar, again.