Life with CVID is a little harder than it looks

SCAR TISSUE THAT I WISH YOU SAW: Years of intravenous pokes have led to some gnarly hands. They’re only going to get better with age.

If you look at my hands, you’ll see the scar tissue rising to the surface like manatee domes.

Hands tell many stories.

Well-manicured hands of another man can explain their lack of physical labour. A missing finger shows perhaps too much labour and a brief moment of inattentiveness.

They can show the age of a woman who has visited the nip-tuck shop too often.

But I talk too much and stray like a life line from the index finger to the palm.

Those aforementioned domes on the back of my hands are symptomatic of too many metal piercings of the flesh – which is more hide-like in texture now.

That scar tissue doesn’t bother me as it’s my badge of survival. Every time I get IVIG for my immune condition, it means I get to live a little bit longer. That’s not being dramatic. The definition of common variable immunodeficiency, the affliction that I have, is simply an inability to produce enough antibodies in the blood.

A mutation in my genes led to my immune system acting all wonky, leaving me susceptible to plenty of infections like chicken pox. Perhaps that’s why I loved the first X-Men movie so much and was a big X-Men fan as a kid. Back then, I considered myself a mutant.

I don’t mind talking about my ailment. I also don’t mind sharing my frustration with anti-vaxxers, who put people like me at risk. We all know, big decisions have a drawback, and I will go further into it down below.

My diagnosis came 22 years ago. Each year is a step forward. With the advancements in genome mapping, Sick Kids, the hospital that diagnosed me with the deficiency when I was 16, has pinpointed the root cause of it – right to a single protein.

That’s epic.

The funny thing is, life with CVID has been pretty mundane as an adult. Well, save for a three-week stay at Princess Margaret to treat aplastic anemia in 2010 – two months before my wedding.

Is ignorance bliss?

I always get great responses from people, oblivious to those who are immune-compromised. There are some managers who get all apoplectic when they find you have to take time off work to see doctors or, before Saturday treatments were available, get infused with the monthly recharge (as my Grade 11 teacher, Mr. Jones used to call it).

Then there are those who say, “I’ve had anemia before.”

My bouts with anemia are a little different from iron deficiencies. I refrain from telling people that I had to be injected with four big bags of horse protein (ATGam), experience a pseudo heart attack, get over-dosed due to a clerical error and experience serum sickness, in order to treat aplastic anemia without a bone marrow transplant.

This isn’t a pissing contest, though.

I do find some folks’ dismissiveness mildly irksome. People can’t see your immune deficiency on the outside, so there is skepticism. That’s only natural. I completely understand. But that doesn’t excuse the haughtiness.

The problem is, when I start seeing signs, that’s usually when things are dire, like petechiae. That usually means my platelets are dangerously low, like when I battled idiopathic thrombocytopenic purpura. Or again, with aplastic anemia.

My teenage life was pockmarked with blood issues. I spent most of high school dealing with ITP (when your body attacks your platelets).

Around this time, 22 years ago, I picked up the chicken pox.

The only unusual thing, at its onset, was that I was 16-years-old. One classmate had it and I would eventually be saddled with the virus too. It almost killed me: I got varicella pneumonia which eventually led to encephalitis. I was placed in a drug-induced coma for three days.

Some folks I’ve spoken with don’t understand the gravity of my past situation. Some doctors don’t. They either pass me along like a hot potato or get that mad scientist look on their face. I don’t fit into the pigeon-holing that is common in medical practices in Canada.

I’ve tried writing about it for mainstream publications, but they seem to feel I’m being dramatic, or they’re trying to get me outside of my comfort zone writing about a subject that’s dear to me. My policy is it’s my story and I’ll present it the way I see fit. When it comes down to it, it’s not about the audience. It is about me and the battle I have with my body.

I’ve never had my hands clean of blood issues. To this day, I visit six specialists either biannually or annually: hematologist, neurologist, gastroenterologist, immunologist, respirologist and infectious disease specialist.

I’m thankful I don’t have more or see them more than that. I honestly have it pretty damn good. And for some miraculous reason – knock on wood – I haven’t had any further issues.

Every time I’ve had a blood disorder, though, the treatments have caused other long-term issues. With hemolytic anemia, my red cells were forever mutated, ergo I cannot donate blood. Small consolation. When I had encephalitis, my badge earned was a scar on my brain and an eventual epilepsy diagnosis. When I had ITP, I had my spleen removed, which led me having digestive tract issues. When I had ATGam treatment for aplastic anemia, I contracted aspergillosis – a fungal infection of the lungs. Expensive treatment not covered by OHIP ensued.

These days, I’ve been in good health, save for the shitload of infections every winter. That comes from being a parent and working in a Petri-dish environment. So, my immune system isn’t exactly the reason.

Sick Kids Hospital in Toronto still sees me on occasion and I’m thankful for that. I’m also thankful that my two kids have very little chance of being saddled with what I have. Even better.

Hopefully, in the future, they can do genetic treatments to help resolve the issue of my lack of antibody creation and further minimize my risk of a leukemia diagnosis.

 

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About the author

Toronto-based journalist, fighting the power one deadline at a time.

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1 Comment

  • Have you tried incorporating virgin coconut oil in your diet to help build your immunity?
    Read the coconut oil miracle by Bruce Fife. Thanks.
    I stumbled on your site looking at angel falls and then read some of your articles.

     
 

 

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