It was the second day of summer, in 2006, after the tenth grade when I started, what I thought, was a horrible cold.

I was fifteen, only three weeks shy of my sweet sixteen, and this was not how I intended to start my summer. Six months earlier was really when this all began. I got the worst headache of my life that just never went away, and doctors had no answer for it. Along with this, I had a swollen lymph node in my left armpit that remained, no matter how many antibiotics I took. Once cancer was ruled out, doctors wanted to ignore it even though it was causing me significant pain. I couldn’t ignore it. This was the summer I would first realize that I was sick.
After about two weeks with no improvement in my cold, my mom and I decided to visit my pediatrician. She told me that it was just viral and that there was nothing that I could do. However, she decided to run a blood test for allergies considering that I have also had this headache for so long. Little did I know; she also ran a test for my immunoglobulin levels. Two long weeks later I got a call saying that my IgG levels were low and that I should come in. I had no idea what this meant. I saw my general doctor who told me I needed to see an infectious disease doctor. Since I still had the symptoms of my cold and it was now known that my immune system was weak, I was put on a 10 day supply of antibiotics.
A few weeks later, I finally saw the infectious disease doctor. She looked at me, and said I had a terrible sinus infection and put me on a month supply of the same antibiotic. Eventually that got rid of my sinus infection. She also ordered more blood work. Once we got back to her, she said that three of the four IgG subclasses were low and she sent me to see an immunologist at the University of Miami.

Once there, I was put through what felt like a million test. I had to get a vaccine and get blood work that tested my pre-vaccine titer levels and a month later, I was tested again to see how my body responded. I had little response. So I was told that even though I have some immune system, it just doesn’t know how to work correctly and that I should start treatment as soon as possible toimprove my quality of life.
The treatment would be IVIG (intravenous immune globulin). This comes from hundreds of plasma donors and is combined to make one dosage. But I was afraid of receiving a blood product. It put me at risk of getting a blood illness from one of the hundreds of donors! I was also in denial. How could I be one of these people? How could I need a plasma transfusion? I felt like I wasn’t like those other people in the waiting room. They all looked so…sick. So I refused. I decided to do rotating antibiotics for six months instead.

I was miserable. The antibiotics made me so sick to my stomach. The following March I decided that I had enough of the medication, the colds, and the fatigue and I told my doctor that I wanted to start IVIG. We decided to wait until June since I would be out of school and I didn’t know how my body would handle it.
I had to get my first treatment in the hospital just in case anything went wrong. However, it went pretty well. It was only the premedication that made me very tired. I had to stay there for about eight hours, since they ran a very slow rate. Again, they weren’t sure how my body would react. Now, it only takes 4 hours. After about 3-4 months, the IVIG made me feel much better. I finally had energy and understood what it was like to not be so tired all the time.
A year later, in 2008, I went off to college. I decided to go to the University of Florida. This was a whole new trouble in itself. Since I had been on IVIG for a year, my doctor took me off of it to see how my body would react. Moving to a new city and getting off treatment was a very bad mixture. I immediately got sick, and spent most of my first semester at college nursing a cold.

Not exactly how I wanted to start off my freshman year! Finally, I was able to start IVIG again in October. However, the nursing agency in Gainesville was a nightmare. So I had to travel to Jacksonville every four weeks just to get my medicine. This was hard to do because it was very time consuming and interfered with my college schedule. Therefore, I decided to start subcutaneous (SubQ) vivaglobin during my first summer back home.
SubQ is a type of medicine that I could do instead of the IVIG. The best part was that I could inject it in my stomach with a pump, and not have to go anywhere or work around a nurse’s schedule.

I was scared of injecting myself, but more terrified of the responsibility. I had to schedule my own treatment every week. In November, I became allergic to the SubQ and had to switch back to IVIG in February. Now, I’ve found a good agency in Gainesville with a very flexible nurse that comes to my room.
Even though living with an immune deficiency is very challenging, it is something that has shaped me. The most difficult was going to a school five hours away and not having my doctor near by and doing all the transitions with the medicine.

I think I made the right choice by going away for college. No matter where I went though, I would still have the trouble of scheduling classes, doctors appointments, and my infusions around each other. The other main challenge was explaining the illness to people. A lot of people don’t understand and often don’t care to learn. Many people don’t seem to comprehend why I am so tired often and why I can’t always keep going like everyone else. Although I put many things in my life around my illness, I don’t let it stop me from living. I am even currently studying in Germany for six weeks. Even though, this meant one of my IVIG treatments will be three weeks late, I felt the experience was worth it.
In a year I will graduate with a bachelor degree in Biology and I plan on going to physical therapy school. This time, however, I am hoping to go to a school near home, just to make things easier. I hope that in the future there will be more awareness about immune deficiencies and the treatment will improve. I am also hopeful that when I come back from Germany, my treatment will stay regular and I will have no further problems and I can begin to spend my time doing other things in my life and looking into my future.

Thanks to Christine D. Lee for sharing her powerful story.  To learn more about Primary Immunodeficiency please visit: http://www.primaryimmune.org/about_pi/about_pi.htm