Guest post: What It’s Like Living with Common Variable Immune Deficiency Disorder by Kiaya Louise Cardwell Church
Hi, my name is Kiaya Louise Cardwell Church. I have several different kinds of chronic illness but the one that seems to be the root of all my issues is my Common Variable Immune Deficiency Disorder. I’ve been living with CVID since birth but wasn’t diagnosed until age sixteen and I didn’t start treatment until age twenty-two. The main reason for the delay in diagnosis is because of medical technology. There simply weren’t the right tests or treatments when I was a child.
Living with CVID as a Child
As a child, I was septic with the streptococcus virus. At eight years old I required hospitalization and the virus damaged a part of my heart. Thankfully I recovered with the right antibiotics and surgery to remove my tonsils and adenoids.
Later in life around age twelve, I began having severe abdominal pain, vomiting, and just all over misery. In early November of 2002, my mother was called from work to come and get me at school because not only had I vomited, but I couldn’t stop. She immediately took me to the emergency room where it was discovered that my appendix had ruptured, and I needed emergency surgery.
I had several other infections such as pneumonia and pleurisy but as far as needing surgical intervention things seemed to calm down after that; until age sixteen when I began having heart palpitations and feeling drained of energy. After some extensive testing, it was discovered that I had a virus called Epstein Barr. This virus is normally the cause of mononucleosis, mono for short, but I never developed mono and consistently tested positive for it. The only way they found that my body was overrun with Epstein Barr was to run extensive blood work. I was started on steroids and antibiotics and told to be on a high alert of any changes.
This was also when my Common Variable Immune Deficiency Disorder was found. However, treatment for people living with CVID was severely lacking and for a child under age 18, it wasn’t recommended because of the side effects unless I was consistently in a life-threatening place. I had my battles, but I wasn’t considered life-threatening, until age twenty-two.
Pregnant and Living with CVID
By age twenty-two, I had two children who were born prematurely due to heart and blood pressure problem of my own and distress on their part. My daughter didn’t have any fluid around her at birth and my son was diagnosed as failure to thrive. I had to have a hysterectomy at age twenty-one due to a serious infection that had set up.
CVID prevents me from naturally fighting off an infection or foreign body. I had retained placenta after my daughter was born. My body never fully healed from her birth. I was constantly in pain; my periods were beyond miserable, and I lost so much blood at once that I was physically a walking zombie. I look back now and I honestly can’t tell you how I lived through that.
Working While Living with CVID
My CVID came up once again when I started working a full-time job as a Medical Assistant. I walked into work one day feeling drained and run down. I’d already pulled my forty hours for work that week and it was only Wednesday. I thought nothing of it – I was just tired. I walked over to my desk and didn’t make it to my seat before I passed out cold, smacked my head on my desk, and took a shelf of charts down with me. My blood pressure was nonexistent, my heart rate was over 130, and my breathing was shallow. My two-year-old daughter had been recovering from scarlet fever and I had unknowingly contracted it without the symptoms other than being tired.
I was transported to the Emergency Room, received fluids, antibiotics, and steroids and sent on my way. They also referred me to an immunoglobulin and allergy specialist to get my breathing under control, further investigate my CVID and get treatment. Long story short, I was extensively deficient, and they were amazed that I had not contracted a severe illness and died. I had absolutely no way to fight off ANY infection. I was started on immunoglobulin replacement therapy immediately.
Immunoglobin Replacement Therapy
Immunoglobin replacement therapy is like getting blood from a donor. It is extracted from a person in good health with a strong immune system with the same blood type. It’s then filtered to its purest and most potent form and infused either subcutaneously or intravenously. Lucky for me I’m able to take my therapy subcutaneously in the comfort of my own bed. That’s the only part about this treatment that is remotely comfortable.
Although the source is a lot like receiving blood, the side effects are a lot like receiving chemotherapy. My stomach is weak, my hair breaks off, my skin can be pale and extremely sensitive. Some months are better than others but those aren’t very frequent. What can be brutal is to get sick anyway on top of these side effects. The stomach body will ravage my body, the flu can be deadly, and pneumonia is a word we don’t speak of here. That word is a curse word here.
Living with Common Variable Immune Deficiency Disorder
Needless to say, my life is not normal. I must take extra precautions when going out to do ANYTHING with ANYONE. Most people don’t understand what I go through on a daily basis with this disease. I can’t come and go as I please. My entire being revolves around doctors’ appointments, treatments, and other people’s infections or germs. I can no longer weak in the field I loved. There’s no way I can constantly subject myself to infectious people. I’d be signing my own death certificate.
CVID has ended a marriage because my ex-husband didn’t understand and didn’t want to. His vow for in sickness and in health meant nothing. I had no choice but to move on and do it alone; that is until I found the man I’m married to now. He has not only educated himself about the disease, but he has also rarely missed an appointment, he has taken the instruction to help me infuse my medication at home, and he has held my hair back countless nights when the side effects become too much. He tries to never put me in harm’s way. If he knows someone is sick or we have to go to the hospital to visit someone he does everything in his power to keep me from being exposed; oftentimes driving me crazy, but he doesn’t take his vows lightly.
Managing Daily Life with CVID
Thankfully over these last seven years, I’ve figured out how to still have a life. I carry lots of antibacterial gels and lotions. I take my medication and use vitamins. My circle has diminished greatly purely because people can’t be bothered to care about someone other than themselves. That’s okay; they weren’t true friends or family anyway.
I’m a mama to two amazing kids, two sweet stepchildren. I have my husband who’s always attentive. I have my parents, and I have amazing in-laws. What more could a woman ask for?! I am stubborn and try to do most things on my own. I refuse a lot of help, but I think the amazing people around me have figured out ways to help without making me feel like my independence is being taken. They consistently find ways to assist me without overtaking the task and making me feel like a burden. We have found our balance.
What I Wish I Knew Before Diagnosis
If I could go back to that scared teenager who was diagnosed, I’d tell her that she could still be everything she wanted. Her path would just be a little different than everyone else.
I’d tell that new mom who honestly thought she was going to die young that God has a plan much bigger than her. He doesn’t make mistakes and he didn’t give you two gorgeous babies just to leave the helpless without you. I’d tell that twenty-one-year-old woman that she has two beautiful kids. Even though she longed for one more baby and one more first laugh or steps that her children will be more than enough to swell her heart with pride and love. I’d tell that twenty-three-year-old divorcee’ that this isn’t the end. You aren’t defective. It was his choice, not yours. You deserve better and amazingly better is coming. Hang in there.
I wish I would’ve known all the lasting effects this disease could have. I wished I knew how it could affect my major organs and pushed for earlier treatment. I’ll be 29 years old at the end of this month and every organ I have left I have to have to survive. My heart was failing at 27 and I needed a pacemaker implant.
Fighting Common Variable Immune Deficiency Disorder
Living with CVID is so much more than just being sick literally all the time. It’s organ damage, its painful, brutal, exhausting, and debilitating. It leaves you vulnerable. One thing it cannot do is take my pride, my will to fight, and my stubborn nature. Living with CVID has made me appreciate every day more because my days are blessings; even the bad ones. It wouldn’t take a whole lot for this illness to have an upper hand in taking me out but giving up is not what I’m about. The saying of “I’ll fight or die trying” captures my mindset and spirit beautifully. I have too much, I love too much, and I deserve too much.
CVID does not define me. I have CVID, CVID does not have me. So while it may come harder to me to race to the finish of the race, you better believe I’ll see you at the finish line.