By Savannah, CVID, United States, February 26, 2021
Hello, my name is Savannah.
My journey started when I was very young.
As a young child I was sick.... well, a lot! It had gotten to the point to where people would tell me I was just making it up for attention. My loved ones would take me to the doctor time after time for constant ear infections, strep throat, sinus infections, bronchitis, you name it! As a child it was very confusing, and of course I thought it was just normal. As I got older, the infections became worse and more frequent. I would go to my family doctor and he would prescribe me the same old antibiotics over and over again! As time went on, the antibiotics were not working anymore. I would take a course and within two weeks I was back at the doctor except even more sick. My family had no idea what to do. My family doctor was not doing anything to help me and was not questioning why I kept needing antibiotics. At the age of 14 I came down with pneumonia for probably about the 7th time in my life, but this time it wasn't going away. I was put on a concoction of meds this time prescribed by my family doctor and went on my way. We had went on a family vacation to the beach, my favorite place in the world. On the way there I was fine, and even a few days while we were there I seemed to be doing okay just a little short of breath but for me this was just "normal" so I though. I was taking my meds as prescribed and by the 4th day of being on vacation I was in so much pain I could not walk. It was the most agonizing pain I had ever experienced! I was running a fever and it hurt so badly to breath that my gums were turning blue. My family drove me all the way home and took me to the hospital. This particular battle with pneumonia had went on for months. I was to the point where I was crawling to get to the bathroom. I couldn't eat, I was coughing up excessive amounts of phlegm and puking.
I was dizzy to the point of nearly passing out when I walked. I had gotten to the hospital and they said I had pneumonia which we obviously already knew, they gave me more meds, ran tests and sent me home. My family was very frustrated with the treatment I was receiving from my family doctor over there years that they took me to get a second opinion. He looked at the results from the hospital and immediately referred me to a pulmonary specialist in Atlanta. The very next day that's where we went. My family took me to this new doctor praying for answers. The office performed thier own x rays and within 30 min my pulmonologist was admitting me to the children's hospital. She couldn't believe what she was seeing. Not only did I have double pneumonia, but also empyema.
"Empyema is usually caused by an infection that spreads from the lung. It leads to a buildup of pus in the pleural space. There can be 2 cups (1/2 liter) or more of infected fluid. This fluid puts pressure on the lungs."
The mortality rate for having empyema is 11-50%
When I was admitted to the children's hospital the first action was inserting a PICC line. Which for those of who have had one is definitely not fun! I was put on vancomycin, and breathing treatments. The doctors were sure they would have to place a draining tube into my chest. But luckily after a week at the hospital and a positive attitude, the vancomycin was working and I did not require the draining tubes. A few days later I was sent home. The hospital made me an appointment with an immunologist to follow up with after my recovery. I still at this point had no idea there was anything wrong with me other than I just had a bad case of pneumonia. I was on vancomycin for 2 1/2 months. I missed the first 3 months of my sophomore year of high school. I also had red mans syndrome from the high doses of vancomycin and steroids. Finally, I went to my appointment to this immunologist named Dr. Lisa Kobrynski. She sad me and my family down and explained that I had a chronic condition called CVID (common variable immune disorder) and that my B cells did not function properly as well. That was the longest and scariest appointment of my life! But, I finally had an answer! My friends and family finally knew it wasn't all in my head, and I was not making it up.! What a relief! I began IVIG infusion the following week, via my PICC line. It was scary and I had some minor reactions. The infusion took 9 long hours!
Since then I have been receiving IVIG, or sub q. I am so thankful that I have a treatment option, but unfortunately it is still not a cure. It comes with many side effects, and CVID on its own is its own nightmare. I still get infections, and my main complaint is fatigue. But I am thankful for the doctors that went the extra mile to figure out what was going on with me. If it was not for them, I wouldn't be here.
stay strong my rare friends!