Is Your Treatment Not Working? And Other FAQ About my CVID

You lick a stamp on a letter to your old self​​​​​​​
You always liked being good at things, didn’t you
Isn’t it funny what a person can get used to

– Amanda Palmer

I know it seems like I only post about CVID lately, but I promise this will be the last for a while.

I have received so many questions about my illness and want to be able to answer them here for those who are interested, as well as for the friends and family of other folks with CVID who may find this in a Google search or in a support group.

I’ve talked a lot about how the past few months have been really rough, so the question I get a lot is: “Did your treatment stop working?”

In short, no. But let me explain.

People with CVID have low levels of two or more kinds of immunoglobulin, the stuff that keeps your immune system strong. The only treatment available for CVID is infusions of immunoglobulin through blood plasma, which can raise our levels of one type: iGG. We do these infusions for the rest of our lives because the igG processes through our bodies and needs to be regularly replenished. Raising our igG levels can help boost our immune systems to stave off infections. However, our igG levels still tend not to get super high, and this is not a cure all.

We also have low levels of igA, which can NOT be replaced or replenished. In fact, some people just have selective igA deficiency, which is more common and still leaves people susceptible to infections. We also tend to have low levels of some other stuff that I don’t really understand.

Immunoglobulin infusions are helpful and necessary to help stave off some of the really gnarly infections. But they are a real bitch in themselves. There are several different treatment methods, but they all essentially inject the same kind of blood plasma. At one time, I was doing weekly infusions, which were a nightmare due to the side effects. By the grace of my insurance company (for now), I am currently on monthly infusions, which have awful side effects but I only have to deal with it for a couple of days out of the month.

But you were doing so well last summer?

This is true – last summer I did feel pretty great. My extreme fatigue over the past few months could be due to a particularly viral-filled winter. I have two kids who thankfully have strong immune systems, but regularly cough into my mouth. Plus, I can’t really avoid germ-filled public spaces. This could just be my body fighting really hard. Or, it could be an autoimmune disorder, which is very common among CVID patients. Time and testing will tell.

Were you born with CVID?

No, I don’t think so. Some people are born with it, but many develop it in their 30s or 40s. I believe my second pregnancy led to a genetic mutation that I was predisposed to.

Did Sepsis cause your CVID?

No. Sepsis was basically a result of CVID, although I didn’t know I had it at the time. CVID led to chronic respiratory and sinus infections. That led to loads of antibiotics and a weakened gut. That led to a bizarre and gnarly gastrointestinal virus which put me into Septic Shock.

A lot of very well-meaning friends think that my disease is “Sepsis” and send me articles about a “cure for Sepsis.” I don’t have Sepsis. Sepsis is a thing that happens to your body when your organs shut down. It’s kind of like a stroke or a heart attack. It’s a thing that happens which you CAN recover from, depending on your circumstances. I believe I have essentially recovered from my Sepsis three years ago. And the positive result is that it led me to discover that I have this immune disorder.

I Saw You Running Today, So I Guess You Are Feeling Better?

This is complicated.

Before I started feeling really sick I was running 5-7 miles at a relatively competitive pace and placing well in my division for the CrossFit Open. Fitness was a big part of my life, and, honestly, probably the hardest part about dealing with this disease.

On the days where I can muster some energy I push myself to do some semblance of a workout. Sometimes it’s a really slow one-two mile run. Other days, it’s a modified, paced workout at my gym. It’s hugely important for my physical and mental health to do what I can in this capacity.

However, it does not mean I am fine. There are days when I workout and then feel really good for the rest of the day, and other days where a workout lays me out for days. Conversely, there are days when I do nothing and feel terrible. So it’s always a gamble. If I can get some fresh air and sunlight with a slower, shorter run, I will try to go for it. But that doesn’t mean you can count on me to be at the meeting/party/dinner later that day.

Are You Gonna Be OK?

Yep. I got this. I mean, it SUCKS, but I can survive with some modifications and support.

Hang with me on my journey and hopefully, this spring and summer will see sunnier days! 🙂

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