Demanding a Path to Better: Being Your Own Health Advocate

I’ve written before about discovering my primary immunodeficiency and living with Common Variable Immune Deficiency.

I’ve also talked about how the diagnosis was pretty much done on my own from interpreting some random bloodwork. In fact, if I hadn’t looked at the numbers, done the research, and asked a lot of questions, I probably would have just gone on being inexplicably sick and tired all the time.

But when I went to a top-rated immunologist at a top hospital, I did not get the answers I was seeking.

I went through all the routine bloodwork again, which showed low numbers for IGG and IGG antibodies. I also took the requisite Pneumovax vaccine test, which showed a result so low the nurses asked me about six different times if I was sure I got the vaccine.

My results were clearly crappy enough to make me a candidate for blood plasma infusion treatments. But this doctor was unconvinced. For an immunologist, he seemed to know almost nothing about CVID. He actually Googled it while I was in the room. He was rude, dismissive, and even a bit sexist. He was convinced that the right treatment for me would be allergy shots, which made absolutely no sense.  I had actually done allergy shots for six years as a treatment for seasonal allergies – these were not seasonal allergies.

I was frustrated and pissed off. And I didn’t know where to turn next.

So I went to an integrative physician who practiced mainly holistic medicine. I explained my diagnosis and my frustration with the lack of treatment. She sold me $200 worth of herbal supplements that did nothing. But, she did recommend another local immunologist who she knew treated several patients with CVID.

When I made my appointment I wasn’t super enthusiastic. I was not looking forward to explaining my medical history for the umpteenth time, only to be wished good luck and sent out the door.

But this doctor actually seemed to get it. He believed me. He could see from my numbers and test results that I needed blood plasma infusion treatments. I was a candidate. I could be helped. Even just hearing the words to affirm that I have what I say I have was a relief.

Now we just had to conquer the f-ing insurance companies.

The doctor started me on a free trial of HyQvia, a subcutaneous blood plasma infusion program that was designed to be taken once per month. After my first visit with the home nurse who was going to “ramp up” my injection levels over a course of weeks, I passed out from exhaustion. The treatment left me completely fatigued for a solid three days. I was terrified that the treatment would be worse than the illness.

The next two sessions were a bit better, but I still spent about 48 hours feeling super exhausted. But, hey, that doesn’t really matter because insurance wouldn’t approve it anyway! They wanted me to do Gammaguard which is a weekly subcutaneous treatment.

OK, so I’m supposed to feel like crap for 2-3 days of every week? I was terrified.

The amount of plastic I have to toss is annoying. But what can you do?

After my Gammaguard treatments, I do spend the next day pretty tired. I can function, but I am only at about 50% of myself. I’m hopeful that as my body becomes accustomed to the treatments it will get better, or eventually maybe I can switch to something that isn’t weekly. But as much of a pain as it is to carve out one day a week to feel really tired, it beats the chronic infections and never knowing when major fatigue will strike. It gives me a little more control.

I got pretty good at this. Humans can truly get used to anything.

The great part is that throughout the rest of the week, I actually feel better. I have more energy, I often wake up earlier and stay up later, and I miraculously managed to avoid catching a cold that seemed to be infecting everyone I knew! Is this what life feels like? I spent the past five years thinking exhaustion and chronic infection was the “new normal.” Could I go back to feeling like a normal human being? At least six days a week?

If I hadn’t done the research, or if I had listened to the first “top doc,” I would have gone on feeling like garbage forever. I may have even wasted hours of my life on allergy shots. This is a true second opinion success story. Demand answers and if something doesn’t feel or sound right, you don’t have to accept it.

Doctors are fallible. Data is imperfect. And some diseases are rare. Fight for your own health. No one deserves to feel like hell all the time.

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