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.

Thursday, May 20, 2010

It's a Miracle!

Talk about truth in advertising -- I do believe that the woman on the left is going to lose weight... about nine months.

Tuesday, May 11, 2010

I Can See Clearly Now, the Pain is Gone

Dear Readers,

It has been more than a month since I last blogged. And lo! the wondrous places I've been! Mainly: an emergency room in Queens and an emergency room in Manhattan.

Let's hop into the Wayback Machine and pretend it's April 2, 2010. I am at home, awaiting a new nurse, so I can get my third at-home infusion of intravenous immunoglobulins. She arrives, seems nice, bangs out the infusion in record time, and leaves. I feel tired, as per usual, and crawl into bed for a nice nap.


I wake around 10 p.m. with a massive pain in my neck. Excruciating. Unable-to-move-my-head pain. I grab a heating pad, wander over to Bob (my recliner), and settle in for a heat-and-greet session.

By the next morning, I remain awake and immobile. But I know that muscle pain is a potential side effect of the infusion. So I wait it out. I call Dr. Mom, who makes me promise to go the hospital if it doesn't get better. Reluctantly, I agree.

By Sunday morning, I had traded "reluctant" for "Dear God, please give me pain medication!"

So I called a car service, hustled over to my local ER at 7 a.m., and was seen pretty much immediately. The concern was clear on my doctor's face -- I presented with fever, headache and neck pain. We had to rule out an uncommon but potentially dangerous side effect of the infusion: meningitis.

After I was given Percoset for the pain, I waited for my initial blood tests. The demented elderly woman in the next bed, who was restrained to her gurney, kept trying escape so she could meet her husband at 3 p.m. "He has a brain tumor, but I think he'll be ok," she kept saying.

I reassured her she wouldn't be late, and perhaps she would like to stay in bed for a few more minutes. I was having visions of her breaking a hip as she feebly launched herself out of the gurney.

"I think the nurse stole my handbag!" she replied. "Good thing she doesn't know I brought two!"

The doctor returned with good news -- the blood tests were clean. I was ready for pain medication and marching orders, but he shut that down. We still had to eliminate meningitis. Which meant a lumbar puncture, commonly known as a "spinal tap."

Unlike the eponymous movie, this experience was a lot less funny.

This was me on Percoset, prior to the first spinal tap:

I was told it's like an epidural, but without the pain relief at the end.

After the SEVENTH attempt, the doctor told me that due to my "physique" (i.e., my plus-size stature), he was having trouble getting the needle inserted correctly. We switched to a bigger needle, to no avail. He kept reiterating that my size was an issue. I had been understanding up until that point, but I suddenly yelled (whimpered, actually), "What do you do with your other fat patients?!"

On the tenth try, with my parents listening from outside the door, he finally did it. I felt triumphant. This is me, right after, looking triumphant:

Old motto: No spinal taps!
New motto: No more than 10 spinal taps in 2010!

After confirming I was meningitis-free, I was released with Percoset for the neck pain, and orders to follow up with my doctor. My parents whisked me off to New Jersey to recuperate.

However, recuperation was not in my near future. I woke up on Monday and felt funny. I spent that morning clutching my head in pain, crying, vomiting, then apologizing to my father for putting him through this. Every time I tried to sit down, I had to run back to the bathroom to throw up. I was so exhausted and could barely walk from the previous day's spinal taps -- (in fact, this was my back the next morning:

) that my father, brilliant man that he is, finally offered me a bucket so I could finally sit down.

"Vomit Bucket," as I came to call it, became the Wilson to my Tom Hanks in "Castaway." I finally collapsed on the couch, bucket in my lap, glad for the sweet release that a short nap brought me.

By Tuesday morning, following a sleepless night, I was dehydrated and in excruciating pain, and begging to back to the emergency room. However, I wouldn't make the trip without Vomit Bucket at my side.

I must have looked awful, because my arrival was like The Price is Right -- once the triage nurse saw me, she was like, "Come on down!" She asked about my pain level, on a scale of one to 10. I whispered, "Eleven."

I couldn't open my eyes.

I couldn't eat.

I couldn't drink.

Let just say it was somewhat unpleasant.

The neurology students stopped by to test me about 20 minutes after I received Dilaudid, a synthetic morphine. They asked me to count backwards from 100, in blocks of seven. My mother, clearly doubtful I could do it even when not drugged, said, "She's heavily medicated, can we wait a little while?"

After tests, tests and more tests, it was determined by my fantastic immunologist that my nurse had run my immunoglobulin infusion too quickly, which was causing severe migraine-like side effects. I was given intravenous anti-nausea medication, as well as the Dilaudid and saline to re-hydrate me.

I was prescribed bed rest and pain killers to take for another week. In addition, my doctor strongly suggested caffeine, which apparently works wonders for people with migraines. This led to interesting conversations in which my parents said things like, "C'mon, just one sip of Mountain Dew!", "I got you 64 ounces of Dunkin Donuts coffee...try to drink it all" and "Hey, Red Bull isn't that vile."

I was too tired to move, but too wired to sleep. So this is what I did for the next five days:

I am so grateful that my fantastic family was there to shepherd me through this awful experience. My mother never left my side, even when there was no chair for her to use at the emergency room. My father listened to me cry, told me it would be ok, and then uncomplainingly took away any box, bucket or bag in which I had thrown up. He was a trooper.

However, there is one acknowledgment I would be remiss to forget, a debt of gratitude so great I will never be able to repay it.

Vomit Bucket, I owe you one!