It all started this past February. One day I woke up with a headache and an earache – not so bad at first, but as the day went on they became worse. Worse than the headache I had the day after a freshman-year boxed wine race that wore the headache crown up to that point. The usual remedies didn’t work – orange juice, extra sleep and keeping warm. I finally decided to take some Advil the next day. Closely following the maximum dosage schedule, my headaches and earaches would go away and then come back as the ibuprofen wore off. I found myself taking more and more in the following days until finally admitting that I needed to make my first visit to UHS. I trudged over to the Med Center with my story and left with Amoxicillin and the diagnosis of an ear infection. Little did I know, this was just the beginning.
In total, I would make seven visits. They went like this: 1) Given Amoxicillin (antibiotic) for ear infection. 2) Given Augmentin (stronger antibiotic) for ear infection. 3) Referred to ear, nose and throat (ENT) specialist who poked hole in ear drum and vacuumed fluid out (which didn’t resolve the massive ear pain). 4) Given Erythromycin (very strong antibiotic) for pneumonia due to development of terrible cough. 5) Blood tests done revealing low red blood cell (RBC) count, liver enzyme abnormalities and many other slightly-off readings. 6) Five-day course of Prednisone (corticosteroids) given due to possible asthma involvement, with finally noticed improvement. After the course was over, I became much worse. That leaves lucky number 7) Admitted to hospital for dwindling blood counts that couldn’t be explained.
I was admitted on a Friday night. While my friends were pre-gaming, I was getting stuck with an IV in an emergency room hallway. The senior specialist of pulmonary (lungs), hematology (blood), nephrology (kidney) and ENT teams were all on my case. I finally figured that something was seriously wrong and became literally scared for my life. I can now imagine many of the groups of doctors going back to a room with whiteboards scrambling to write down possible diagnoses that fit my symptoms, blood test results, CT scans and X-rays, much like on the show “House.”
I had blood drawn five times a day, four blood transfusions, a nasal biopsy and a bronchoscopy along with countless other tests. Finally, after a week of food from the world-renowned Strong Memorial Hospital kitchen (i.e. leftovers from Danforth) and many recitations of my dreadful symptoms, an answer surfaced.
“We think you may have Wegener’s Granulomatosis,” said the eldest doctor in the pulmonary group. At last, somebody knew what was wrong with me! “It’s treatable,” he quickly remarked.
I was quickly put on maximum dosages of corticosteroids (400mg/day) which opened up all my inflamed blood vessels so dying cells in my ear, lungs, kidney and many other places in my body could finally breathe and begin to heal. Within hours I felt alive again. My dad scoured the Internet for information. Wikipedia had an excellent summary of the disease. As I read it over I was amazed at how perfectly my symptoms fit, how rare it is (1 in 30,000), and how difficult it is to diagnose. I was released from the hospital two days later with 80mg/day Prednisone and 150mg/day Cytoxan (chemotherapy immunosuppressive). Words like autoimmune and vasculitis that I had never heard of were now in the forefront of my mind.
I was free. However, blood tests over the next week showed jolting increases in serum creatinine, pointing to kidney failure. I had to once again be admitted to the hospital, this time with a catheter placed into veins in my neck for dialysis. This devastated me because I had to be in the dialysis room of Strong with 80-year-olds who were literally on their death beds next to me. This time it took 11 days, but I was finally released and thankfully discontinued dialysis due to improving kidney function. My RBC count was still dwindling over the summer, so I was given erythropoietin (EPO), the famous alleged Lance Armstrong blood-doping drug that boosts RBC count. By August, I felt almost completely back to normal, forgetting the “second chance at life” feelings that survivors of terrible diseases inevitably have.
One of the worst parts about Wegener’s is the lack of pinpointed causes. From my experiences of talking with many patients, I would point to stress. Doctors are reluctant to point anything to stress because it’s not provable, but I have this disease and I need answers. Seventy-five percent of the people I talked to had a very stressful situation prior to the onset of their disease. Serious relationship problems or watching a loved one die came up often in these conversations. I believe the worrying process, at an extreme, can cause this disease to come about.
Wegener’s Granulomatosis has been mentioned on “House” five times. I am here to tell you that it and other rare diseases are real. However, it is difficult to accurately depict an autoimmune disease. After all, the patients on the show aren’t actually sick, they’re just acting sick. My disease didn’t start with an acute 911-worthy attack sprinkled with a few convenient spastic attacks during conversations with doctors, some IV bags and maybe some surgery. Instead my disease slowly worsened over many weeks and took one full month to get to the correct diagnosis.
Contrary to watching “House,” it’s no fun to be the ant under the magnifying glass, but you either get through it or you die. I’m thankful to be writing this article now, happy and alive.
Scheffer is a member of the class of 2008.