Epstein-Barr Virus

Fifteen days after receiving two new lungs I was discharged from the hospital. My parents had found an apartment for my mom and me to stay at during my minimum of three months of rehab and had moved my things out of my apartment near campus so my roommate could sublet my room. I was thrilled. I was exhausted not only from almost dying and massive surgery, but from the schedule the hospital had me on, which involved waking me up a few times during the night and interrupting my naps. Plus, the food in the hospital is terrible.

My parents had picked up all my new prescriptions from my pharmacy and had scrubbed down the new place to make sure it was germ-free (or as close to germ-free as you can really get). It was great. I could sleep the night through, and my mom had snacks sitting everywhere and was making me my favorite meals every night (I lost a significant amount of weight leading up to and after transplant, and since I was underweight beforehand it was pretty pathetic how tiny I was). Every Saturday I would sort out my medicines for the week in the tray given to me before discharge. I worked hard at making sure I had the new regimen of pills down.

Getting the correct level of immunosuppression medicine is an experimental process right after transplant. Every week I went to clinic and had blood levels drawn to check my tach (tacrolimus) level. The immunosuppression approach has 3 main medicines. Right after transplant mine were: Prograf (tachrolimus), Imuran (azathioprine) and prednisone. I took my prescribed dose of Prograf and Imuran every 12 hours and prednisone at a high dose until I tapered off to once every other day.

One Saturday about a month after my transplant, while sorting my medicines out for the next week I looked down at the Imuran bottle and saw to my horror that the pills were only 50mg The prescription was for “two pills by mouth, twice daily”. I had thought they were 100mg, and had only been taking one pill twice a day. I almost panicked, but calmed myself because it would not do any good to freak out and also I did not want my parents to worry. I put two pills in all the morning and evening slots and let it be.

A couple of days later I began having stomach pain. I talked to my coordinator, who did not see any reason for panic and told me to take it easy and let her know if it got worse. The next day I was fine, but then later that night I woke up to extreme stomach pain. I called my coordinator and she said to go the emergency room and she would call ahead and let them know I was coming. I was given some pain meds and had plenty of tests run and was eventually admitted.

The following day my neck swelled so much so that I looked like I was sporting a turkey neck. That is when I was finally diagnosed with Epstein-Barr (EBV). Most people get EVB at some point in their life, and if any symptoms are present they are similar to a cold. Once a person has been infected, EBV lives dormant in the immune system with little to no worry about after effects for a healthy person.

EBV however is not so simple for immunosuppressed patients. The treatment involves 2-3 weeks of IV drugs that are as powerful as chemo. After a PICC was placed (since my port had been removed during my transplant) I was trained on administering the IV drugs and making sure none of them touched any skin or other surface accept the sterile pad I had to lay out. It was so comforting knowing I could not touch the stuff or I would get a rash or burned, but it was okay to pump it into my veins.

I learned that the reason I had been infected with EBV is because my immune system was over suppressed. My Imuran was stopped immediately once the EBV was discovered. I have not taken Imuran since.