Thursday, May 27, 2010


Since I was diagnosed with Common Variable Immunodeficiency (CVID), I sometimes catch myself thinking that I am OLD. Perhaps this is because I qualify for home nursing, or because my depressed immune system so often makes me feel tired. I had a dream the other night that I was going bald (not a problem for women of any age in my family), and I woke up and ran to the mirror, where I inspected my very-much-intact tresses.

Over the past couple years I have periodically received this postcard:

Being actively pursued by a cemetery also makes me feel old. However, I feel progressive, too, because even though I am not married, my fictional husband appears to have taken my last name. It's either that, or "Nancy" is the next big thing in gender-neutral names. The first postcard arrived right after I returned from a four-day stay in the hospital, when I was diagnosed with a platelet disorder (which turned out to be the first symptom of the CVID). I worried for a moment that the hospital had put me on some kind of list. You know..."People Who are Going to Die In the Near Future, Even Though We Lied and Told Them They Would Be Absolutely Fine."

And now, like many old people, my house is turning into a pharmacy. Four months ago, I started doing home infusions of IVIG (intravenous immunoglobulin) with a visiting nurse. The medication and supplies were shipped to me in a large box. This is what it looked like when I unpacked everything, for a SINGLE monthly infusion:

There's something about receiving your very own IV pole that cements the idea that you have now begun a slow descent into old age.

And then, as I mentioned in a previous post, I had an unfortunate experience with IVIG that landed me in the hospital several weeks ago, begging for pain medication. (Ah...nostalgia!) This prompted my immunologist to change my treatment to ScIG, subcutaneous immunoglobulin, which is something that patients can self-administer weekly after two or three training sessions.

So a new box of supplies arrived, followed a few days later by a nurse. He ran me through the steps, gave me written directions and completed my first treatment. The medication is absorbed under the skin, which makes the area receiving treatment tender. Frankly, I was sore and lumpy. (Lumpy: my new nickname.)

I was determined to become proficient in two sessions, so I could finally stop asking for time off from work. After my first session I hunkered down and got serious. I retyped all 15 steps so I could drill them into my head. I watched the Vivaglobin training video about a dozen times, often while holding the supplies in my hand, so I could practice. It was like being back in school and cramming for final exams.

By the time the nurse arrived, I was almost excited. Which was unusual for treatment day. But I breezed my way through, and he told me I had prepared more than any other patient he had seen before. He was confident I would be fine.

For the first time in a while, I was actually confident I would be fine, too. Granted, ScIG isn't fun, by any means. I still have to take Benadryl, because it makes me itch. And whichever area you chose to stick with the four administration needles is quite sore for the next day or two.

However, I finally realized that even with all of that, ScIG is a MUCH better solution for me. What it represents is treatment on my own time – no more half-days off from work (or more, depending on side effects). No more planning my life around the weekend I needed to recuperate from the IVIG. I will finally be able to take the medication, a small pump and supplies with me wherever I want to go.

Ultimately, it means freedom.

And nothing screams "I'm still young!" like freedom.


  1. Dear Lumpy,

    I needed a few laughs tonight. Thank You for your wonderful outlook on life and your great writing style.

  2. You have a great sense of humor. I love this: "It's either that, or "Nancy" is the next big thing in gender-neutral names." Hilarious!