Knowledge is power. When I was diagnosed with CVID I did not have that power so I made a lot of mistakes. I don’t want anyone else to experience what I did, so you must have a CVID Diagnosis Action Plan. 

The Day I Could Not Get Out of Bed

I don’t remember the exact day that I could no longer physically get out of bed, but it was sometime in the summer of 2017. For almost six months I had been dragging myself through my work day, only to collapse in bed as soon as I was home. I had nothing left to give to my sons, only in 2nd and 6th grade, or my husband. Deep down I knew something was wrong, but I attributed it to stress. We had just moved in 2016, worked a stressful sales job and had a young family.

On the day my illness took another step toward my demise; I no longer had the strength to get out of my bed. eat or sleep and I was suffering from severe dehydration. I weighed less than 120 5’8” tall and was completely debilitated.

Hopelessness and Helplessness

The many specialists I saw did not search for the underlying cause, and instead just kept prescribing antibiotics (one of which I was on for a full year to keep a serious infection at bay!) along with a myriad of other medicines. Now bedridden, I could not even drag myself out of bed to help my sons get ready for school. 

“Mom,” my 6-grader said, “Even though I’m older now I still need you.” My heart was breaking along with my body. My friends and family, having been supportive in the beginning, increasingly became judgmental, unknowingly saying hurtful things as no one could figure out the reason for my illness. Everything from depression, a midlife crisis or perhaps menopause was deemed the real cause of my inability to function.

The people I counted on to be there for me, the people I loved, became tired of always helping me and my family with daily tasks. Honestly, I often did not convey how sick I truly was and my family could not have understood anyway. I found myself alone and dying from something that, at that time, had no name.

A Sunny Life Eclipsed By Darkness

I had been a Sales and Service Representative for Varsity Spirit Fashion, a company that makes cheer and dance uniforms, for ten years. I loved my job, but began receiving those disapproving looks and flack from my colleagues and manager. My husband and I had just bought a house in a wonderful area of Kansas City, and my children were thriving. I had no discernible reason to feel depressed, sick or exhausted. Yet, there I was, day after day, wasting my life away for no apparent reason because I was physically unable to get well and get out of bed.

The Dawn of My Death Sentence

I was finally diagnosed with CVID in November 2017 while with my 2nd grader at his asthma appointment. You can read all about how Dr. Kanarek, who specializes in Allergy, Asthma and Immunology, diagnosed me almost on the spot in this post! 

CVID is genetic, therefore not contagious, and it had been dismantling my immune system’s strength, undetected, since my birth. I had always been one of those kids that contracted every illness that circulated. I was on antibiotic after antibiotic after antibiotic…almost continuously.

As I grew older, my condition, (a Primary Immune Deficiency Disease, or PIDD), progressed. As I became increasingly vulnerable to bacterial and viral infections, my doctors seemed completely unable to figure out what was wrong with me. 

I did not realize I was never given the right blood test. It’s a simple test, measuring one’s immunoglobulin levels (we all have IgG, IgA, IgE and IgM which are the building blocks of our immune systems). When a person’s blood count is low in these categories, the doctor then administers another fairly simple blood test to see if your antibody levels spike in response to a common vaccine. If they do not, you may have a Primary Immunodeficiency that needs treatment. 

For those of us who have a confirmed immunoglobulin deficiency, such as mine, our prognosis is fatal without treatment. We require regular infusions of immunoglobulin derived from donated plasma to stay alive for the rest of our lives. I am one of those patients.

Portrait of a Killer

This disease affects approximately one person out of 1,200 in the U.S., according to J. Michael Boyle and Rebekah Buckley in “Population Prevalence of Diagnosed Primary Immunodeficiency Diseases in the United States”, Journal of Clinical Immunology 2007. 

In their article, which represents recent theory; previously our medical community has assumed that PIDD is a “rare disease”, therefore not something one must test for on a regular basis. Boyle and Buckley write about recent figures which indicate this disease is much more prevalent than previously assumed. 

Unfortunately, the word has not spread far enough into everyday medical knowledge to justify regular testing. 

Without Treatment We Die

After I had been diagnosed correctly in 2017, I was lucky to be the patient of Dr. Kanarek whose office was efficient in getting IgG treatment approved through my insurance. Luckily, I have excellent, albeit extremely expensive, insurance through my husband’s employer. (I quit my job a few months earlier in 2017 because I could no longer perform my duties from my bed although I tried!) I tell you what though, I surely would have benefited and even felt a sense of comfort from a CVID Diagnosis Action Plan.

You can read all about my first Intravenous Infusion of IgG medicine which will help you prepare for yours. You can also read about the side effects I dealt with in this post. In August 2020, I asked to switch to Subcutaneous Infusions which although I have to do weekly, but cause less side effects. You learn all about my experience with those here and even watch a video of me infusing at home!

Deliverance from Death Is Expensive 

Side note here: quitting my job was a big mistake. At the time I did not have a diagnosis and was not thinking clearly, although now I know my employer legally was required to allow me a certain amount of time off and accommodations if needed when I returned. Quitting my job ended up putting my family in a less than desirable financial position to say the least.

While we had enjoyed a healthy financial life prior to my disease becoming acute, we lost almost everything due to costly medical bills not covered by insurance during my search for a diagnosis, having to pay the highest premiums to ensure my treatment was never denied, and even more costly medical bills after I started receiving treatment. I lost my 401K, my sons’ college savings and accumulated credit card debt.

I remember one hurtful comment casually made by my Father-in-Law’s long-time girlfriend during our Thanksgiving gathering. “If someone can’t get IT together after [a certain amount of time and money used], then I don’t know if they ever will.”

It’s not her fault. She, like many others, does not understand that you can not just be treated for CVID and move on with your life. You can live a successful life with proper treatment for CVID, but CVID will never go away.

Why You Must Have a CVID Diagnosis Action Plan

Have I convinced you yet? This simple, free action plan I’ve put together would have saved me hours and hours of internet research, preserved my mental health, provided me with the support of others going through the same thing, perhaps saved me from a precarious financial situation and so much more.

So, download your CVID Diagnosis Action Plan below and be sure to contact me with any questions you have at all. I’m here for you.

Stay Strong My Zebra Friends.

Susan Alynne CVID Signature

Though DIVA as she may be, her path to success was not easy and is always evolving. Go here to read about her journey in “Becoming the CVIDiva.” If you want to send Susan Alynne a quick message, then visit her contact page here.