We are delighted to share our newest patient Q&A with Amy, a Primary Immunodeficiency warrior. She was diagnosed with CVID in 2011 after being plagued with chronic pneumonia and bronchitis for years. Amy shares her story on social media in the hopes to debunk myths, spread awareness, and show that people living with a chronic illness can live normal lives, as she continues to hike in Alaska, run half marathons, and live life to the fullest. We hope you enjoy reading her story!
Please share a brief overview of your story.
Beginning at a very young age, I was plagued with chronic pneumonia and bronchitis, often leading to hospitalization. Despite this, I led a very normal life. I enjoyed a career in motorsports public relations and later in corporate marketing for a major corporation. In September 2011, I got sick with my usual fall respiratory illness. I began treating my symptoms as usual, but when I didn’t improve, I began taking antibiotics prescribed by my primary care physician.
I ultimately received two full rounds of antibiotics and was only getting sicker. Thanks to the advice of my best girlfriend, who is a registered nurse, I chose to walk into my local ER, where I assumed I would maybe get a breathing treatment of albuterol, some steroids and maybe a shot of an antibiotic; however, once I was there, I was informed I was much more ill than I believed, and they insisted on admission. This began a series of admissions over the course of the fall which totaled over 35 days in-patient. My respiratory distress was so significant, it was even discussed that I needed to be intubated. Needless to say, the doctors were all befuddled about what was causing such illness and why I wasn’t getting better. After becoming stable and able to be discharged, I was on a daily high dose of corticoid steroids and then referred to a specialized hospital in Denver, CO - National Jewish Health.
How and when were you diagnosed?
My diagnosis was a long and definitely team effort. I was evaluated by National Jewish Health in Denver, CO, which specializes in pulmonary and immunological diseases. I was also referred to an immunologist here in Kansas City. Between them, it was noted I had significant IgG, IgM, and IgA deficiencies. After this was discovered, I was given a vaccination challenge with the pneumovax vaccination, which I failed. This was the first time I ever heard the term CVID or Common Variable Immunodeficiency.
How has treatment impacted your life?
Because I had been on corticosteroids for an extended period of time, I developed osteonecrosis of the femoral head. This essentially is when the ball of the hip joint begins to lose blood flow and die. There is no really good treatment or cure for this so in February 2014 I had bilateral total hip replacement.
Once I was formally diagnosed, I immediately began IVIG. I went through the usual trial and error in finding the best brand for me, with the fewest side effects. Especially in the beginning, after infusions, I was extremely fatigued, endured excruciating headaches and had fevers. Of course, like most, these side effects began to subside and dramatically improved when I found the most compatible brand of IgG for my body.
How did you decide this was the right treatment for you?
I initially began with IVIG and did this for over 10 years. I even was fortunate enough to have a port placed, as I began to have scar tissue buildup from all the IV sticks. I cannot say enough what a wonderful team of infusion nurses I had during this time and what wonderful friendships we formed. There is absolutely nothing wrong with this route; however, about two years ago I did switch to SCIG that I administer at home.
Frankly, the only reason I made this change is to better accommodate travel and the lifestyle I live. I strive to live the fullest and most adventurous life I can, so SCIG allows me some flexibility. I will say, this isn’t without some negatives. I have a huge med cart in my home and I have to have the discipline to infuse every week. I also have a long-ago background in healthcare myself, so monthly I have to access and flush my port, which is a sterile procedure. Doing things at home or during travel is more work than just going to the infusion center but it allows me to infuse anywhere. I’ve infused everywhere from Alaska to Hawaii to Colorado!
Why did you decide to start your Instagram page and share your story?
I began to share things about living life with chronic illness, most specifically Primary Immunodeficiency, to debunk myths, to show that those with chronic illness can and do live full lives, and to spread awareness. Look, I don’t feel well every day and that is okay! But on the good days I want to show that CVID patients are able to hike in Alaska, do that 1/2 marathon or 5k, find love, and live big. It might take some modifications and you may not feel like taking on 10 miles of jogging every day, but you also don’t have to sit and watch your life pass you by. I’m like most with CVID, I miss dinner dates with friends because I don’t feel well, I hesitate to make plans too far into the future because I never know how I’ll feel, but when I have the energy and I’m well, I want life to be as normal as possible.