“College and immunosuppression: Be Ye Forewarned!!!”
If I learned what not to eat in middle school (see nutrition page) I learned what that you never underestimate immunosuppression in college (and also what not to drink but more to come in the future).
College dorms are like breading grounds festering with disease where every winter when 1 person gets sick up in there the whole dorm will start dropping like flies (I’m being dramatic but there is truth in jest). If you’re a college student taking immunosuppression and ESPECIALLY if you are living in a dorm you need to take extra care of yourself to prevent getting sick. *PATIENT TIP – It may sound stupid but go buy a little bottle of hand sanitizer and hand cream. You should use the hand sanitizer before you eat etc (be sensible about it no need to go insane you can live your life) and the hand cream because that hand sanitizer will dry out your hands eventually. I don’t think you need to change your life to help stay healthy (we all know you’ve got enough going on as it is) but there are some simple things you can do to stay healthy.
I will share with you a few instances of where I’ve been acutely sick while on immunosuppression. I’m telling you this because you may not be really aware (or care) about the fact that the immunosuppression you are taking is serious stuff. Your doctor has likely given you a straight laced warning about “now son you have a decreased ability to fight infection.” But if you were like me and felt as frustrated about my diagnosis as I was (see medical history page) you probably heard the doctor’s advice and forgot it five minutes later.
I’m here to tell you I WAS AN IDIOT for not paying attention to my body when I felt myself getting sick. *PATIENT TIP – If you are around the ages of 17 or 18 and still seeing a pediatric PCP it’s time to graduate to an adult internist. Ask your GI doctor to recommend 2 or 3 internists and GO SEE ALL OF THEM. PICK THE ONE YOU LIKE AND WILL LISTEN TO. Here are a few stories about how quickly you can go from feeling fine on immunosuppression to being in the hospital.
1. Sophomore year college: Medication = Remicade.
This happened on a Saturday morning with virtually no warning I was getting sick. I had been taking Remicade for some time and fortunately I was in okay health (I had Crohns symptoms were still there but manageable). I recall vividly that Friday night all I felt was my throat was a bit ‘scratchy’. It was not painful really at all and I could swallow without difficulty. I thought nothing of it and went to bed. . . I wake up around 6 am and my face feels all sticky and wet. I walk over to the bathroom and I had blood all over my face coming from my mouth (Walking dead much?). My throat went from feeling basically normal to bleeding everywhere in like 8 hours…yes that escalated quickly. I went to emergency clinic, got antibiotics and was okay.
2. Sophomore year college: Medication = Remicade.
I woke up one morning feeling a bit ‘off’. I hadn’t noticed feeling like I was coming down with anything the previous days but felt more tired than usual, had difficulty getting out of bed, and felt a bit dizzy in the shower. THAT IS WHERE I SHOULD HAVE CALLED A DOCTOR. I didn’t and started the walk to class. There was a slight hill outside of my dorm that you would hardly notice was incline. Walking up this I knew something was seriously wrong. My heart was pounding, I was really short of breath and stopped to allow myself to catch my breath. I was in really good shape at the time and I knew this wasn’t good, I called my mom and said we need to go to the ER. Long story short I ended up having pneumonia and mono. I WAS SCHEDULED FOR REMICADE THE FOLLOWING WEEK SO WE CALLED MY GASTROENTEROLOGIST AND LEFT A MESSAGE JUST TO BE SAFE (clearly my mom was with me).
I got a call back two days later by my very concerned sounding GI doctor. He explained that he never had a case of a patient with Epstein-Barr virus (which causes mono, and can in certain circumstances cause some forms of cancer-rare) needing to receive Remicade so he emailed a friend of his at Children’s Hospital in Philadelphia for advice. This GI doc called mine within 2 hours and explained that he only put 1 patient with mono on Remicade and this man developed cancer because of it…needless to say I didn’t take Remicade the approaching week
3. Round 1 in medical school (ready fight!): Medication = Humira.
Again I had no real indication to think of I was getting sick. It was a Saturday morning and I was walking up a hill to school to go study. I had to stop, catch my breath and let my heart rate normalize (not normal for me). I get up to the building, settle in and start feeling freezing cold, chills, nausea and just horrible. I called my new GI doc and he said to go to the ER. Well I had pneumonia and severe dehydration which caused me to faint in the ER.
I’m telling you this stuff not to freak you out or make you unduly nervous about taking or starting immunosuppression. Quite the opposite actually, you and your doctor clearly determined that you need the stuff to get into remission and feeling good again. But you have to be cognizant of how you are feeling. I wish in college I would have asked myself some of the following questions just in my head each day. Do I feel normal right now? How is my breathing? Have I been coughing? Do I have any tenderness anywhere? Am I drinking enough water? Are any of my roommates or close friends sick? These are pretty simple check list kind of questions you can ask yourself to save a big headache.
Comment with some ways you all use to make sure you stay healthy (aka not getting more sick) while on immunosuppression?