Several weeks before his diagnosis, Mark came down with what we thought was a sinus infection. Our family doctor prescribed some antibiotics, which did no good. Another prescription was tried, then another, with no avail. Mark kept getting sicker and sicker, sweating profusely, coughing heavily, wheezing, unable to breathe due to blockages in his nasal passages and severe lung/chest pain. He lost a lot of weight. Finally our doctor decided to take a chest x-ray. The results were remarkable: the lungs literally looked like Swiss cheese -- full of holes. There were at least nine lesions in one lobe visible and four or five in the other. Immediately our doctor made an appointment with an infectious disease doctor. The next day, the infectious disease doctor took one look at the x-rays and admitted Mark to the hospital in isolation.
It was scary for me to have to put on gloves, gown and mask each time I visited my husband. He lay there day after day, visibly wasting away. It seemed once he entered the hospital, he went downhill fast. Doctors came by the dozens, residents and students herded by physicians who checked my husband over and questioned those who had no answers. Thee were no answers it seemed. No one seemed to know why Mark was dying. Some thought he has AIDS, some thought a fungal disease perhaps carried by birds (our downstairs neighbor raised birds), some thought tuberculosis although several tine tests proved otherwise. There was no definitive answer. They could not give him any medication because they didn't know what to treat him for. He lay there, sweaty, uncomfortable, in pain, and waited, as I did, for answers that didn't come.
Finally an open-lung biopsy was proposed. The cardiac surgeon who would open the chest came to explain the procedure to us. The rib cage would be cracked open to allow a surgeon to slice open a lung to remove a lesion for biopsy. A scary thought, but at least the biopsy might allow some answers.
The next morning I arrived at the hospital before 6:00 a.m. to find Mark's bed already empty. I was perturbed that they had taken him to surgery without me even getting to say good-bye to him. I was told to go to surgical waiting, but the attendant there did not have Mark on the records for surgery that day. I was getting more uptight by the second. Almost an hour later the attendant tracked down my husband and told me to wait, that he would update me when he received word. I was unable to relax. The minutes slowed as I waited for any news. Finally I was told Mark had been returned to his room and I was to meet the surgeon there.
By the time I reached the isolation ward, I found Mark still asleep. He awoke periodically but was very groggy. Finally one of the doctors I had gotten to know over the past couple of weeks motioned for me. I met him at the nurse's station and he briefed me on what had happened.
Sometime overnight, another doctor had been consulted and the open lung biopsy had been scrapped. While it was good news that Mark's ribs had not been cracked open, I was upset that I had not been told of this change beforehand. Instead, a sinus biopsy had been performed... a lot less invasive with hopefully the same results. The doctor seemed to indicate that there could be a possible diagnosis, thanks to the study of the infectious disease doctor.
Since Mark was pretty well out of it from the anesthetic, I decided to go home early to see our son. The poor kid was 18 months old and blissfully unaware of what was going on with his Dad. I had been home for about an hour when the phone rang. Another new doctor, who identified himself as a rheumatologist, wanted to meet with me in Mark's room that night at 6:00. I did not enjoy driving through rush hour metro Detroit traffic, and was even more perturbed when I had to wait another hour before the doctor even got there. What a day!
Dr. Timothy Brennan explained to us about this rare form of vasculitis my husband had somehow contracted. There is no known cause and no known cure for WG. I have always suspected that Mark's work in nuclear medicine -- drawing doses of highly radioactive chemicals for medical tests and scans -- had some part in his contracting WG, but we will never know for sure.
WG is a form of vasculitis, a disease of the blood vessels that affects the autoimmune system. Mark's immune system was overactive, slowly killing off organs in his body -- almost the exact opposite of the AIDS some doctors thought he had.
The doctor warned us that there is no cure for WG and that if left untreated, the average person would be dead within five months of onset. Mark had been ill for approximately three months at this point. He said treatments were available, but the best we could hope for was to put the disease in remission. Mark has yet to achieve this milestone. Something always comes up to push him back just when he starts to feel a little bit better. One good thing, however, is that once they started treatment with high doses of Prednisone, I was amazed at the difference. One day Mark was near death it seemed, the next he was awake and aware and very much his old self. We were warned however that Prednisone was just masking the disease and that only blood tests would tell whether he was in remission or not.
Prednisone is a miracle drug, but it has its myriad of problems. One must wean off of it very slowly. You cannot just stop taking the medication or damage could ensue. Mark has never been able to get totally off Prednisone. He has gotten as low as 2 mg. before his disease would flare up again.
Thanks to Prednisone and the other drugs they were giving him, Mark was able to return home within a few days. But he was not himself. Our apartment at the time was up a flight of steep stairs. Suddenly these became a burden, especially while carrying something.