Idiots on a Plane: or Big Diagnosis #2 – CVID (Common Variable Immune Deficiency)

Pre-CVID Diagnosis
Pre-CVID Diagnosis

How many people are forced to stay at home during winter/cold and flu season? Well, that’s my life since I was diagnosed with CVID (Common Variable Immunodeficiency) when I was 18 years.

At the time, I had no idea what that meant.  Looking back, I was happy to know that there was an explanation why I was repeatedly ill, well beyond anyone else I knew.  I was also relieved to know that it wasn’t all in my head.   At the time, I was just accepted into Fresno State and my beloved best friend, Oakley, a golden retriever was diagnosed with cancer. My life was full of changes both good and bad.

CVIDI didn’t have the best high school experience because I had a very different life than any of my classmates.  I spent the first two years fairly engaged, I even made the Freshmen and JV cheer squads.  My next two years; however, were mostly home hospital instruction.  All through high school I was dealing with what it means to live with my life-long disease, now diseases. My diseases are not curable, but treatable to an extent.  These treatments are palliative, meaning they are meant to improve quality of life and control pain.  Thus, from 15-18, and even today, I am still dealing with the consequences.

Post-CVID diagnosis with Alexis
Post-CVID diagnosis with Alexis

Early in high school, I went through “The depression.” The depression is what most people with serious chronic disease realize their disease is not going away and it will likely get worse.  That time happened just before I turned 16.  It was one of the worst periods I have ever had.  As I was getting help with my depression and dealing with that, I went to my gynecologist because I had a cyst that keep bursting.  At 17, she accidentally informed me that I would never be able to carry my own children. Although, I have heard before that this was a possibility, it was the first time it was definitively stated.  With this knowledge, I was so ready to start fresh and begin my adult life.

ASUThings didn’t last long for me  at Fresno State. I was able to get a single room dorm to try and stay as healthy as I could, but even I didn’t have a full understanding  what is really means to have CVID.  My doctor obviously did because he would not sign off on my health physical without requiring a single dormitory.   At the time, I feared that my college experience would yet be another high school experience and it scared me. I wanted to prove everyone wrong and that included me.  After just one semester at Fresno State, I had to leave.  This will be topic of another blog.  It has now been almost 5 years and I still haven’t graduated college. After Fresno State, I found myself getting sicker but not willing to give up on college so I applied and was accepted into Arizona State University. ASU provides extensive online courses and this seemed and seems like the ideal solution for higher education.

With my CVID, I get sick so easily.  I can actually tell you exactly when I will get sick.  One example was from the last trip I took.  My family and I went to South Carolina for Christmas and New Years. Of course, I often get sick on planes due to other.  But this time I felt good about the trip since I was on antibiotics for yet another recurrent C-DIFF.  I had a mask, wipes and antibacterial spray.  Things were looking pretty good.

On the plane
On the plane

That was until the leg from Charleston to Dallas.  I want to tell this story because its important!!!!!!! When you are sick and contagious, DO NOT GO OUT IN PUBLIC! Or, at least control it with a mask and basic hygiene.   There was a young child, about 8+ years of age, sitting next to his dad coughing and wiping his nose without covering his mouth or sanitizing his hands.  The cough sounded very croupy – now I know what it was – parainfluenza 3. Why hadn’t this child and his parents learned the importance of covering his mouth and not wiping boogers everywhere and more importantly why didn’t his father intervene?  I turned to my dad and said “mark my words, in 3-4 days and I will be sick!” and crap, I was all too right.

At the hospital with Jake
At the hospital with Jake

About 3 days after we returned, I became congested, starting desaturating, and my concurrent care nurse called my dad.  He listened to my one good lung and it wasn’t so good that day.  I was struggling even on home oxygen.  He told my dad, I needed to get to the hospital and get respiratory support.  I went to the ER, was admitted to the PICU and received high flow oxygen and supportive support.  My blood test indicated I had Parainfluenza 3, the virus that causes croup – just like that kid.  This time, I promptly recovered, except for the CLABSI that I picked up along the way, but as above, that is a story for another day.

Practical-popupThe point here, is that there are many ill people; many with compromised immune systems.  If you are ill or a family member is ill, recognize you have a duty and an obligation to contain the illness.  If it means masking up, not traveling or seeking treatment, do so.  For your selfish actions can place others at risk or serious illness or death.

In my case, they did – thus don’t be that selfish Idiot on a Plane.

 

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