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A Blur of Activity
The next couple of days passed in a blur of activity - from regular blood drawings to EKGs and Ultrasounds. Many doctors visited me as they pondered over charts and test results. My primary physician finally informed me that I had been diagnosed with a DVT (Deep Vein Thrombosis) in my left leg. He said they would keep an IV of Heparin going until the clot was broken down and that I was to stay of my leg until he advised me otherwise.
Over the next few weeks my swelling went down as the clot dissolved but the doctors found two other conditions that required monitoring – I had been diagnosed with Vasculitis and Colitis. They had also been confused about a couple of things: 1) my white blood cell count was extremely high (more than ten times normal) and they could not diagnose with confidence whether I had Ulcerative Colitis or Crohn’s or any other form of Colitis. After a colonoscopy and biopsy it was explained to me that the condition presented itself like Ulcerative Colitis but they had not found any ulcers in their tests.
The weeks stretched on and March came along – I was left to celebrate my birthday in the hospital. In March a “Pyodermic Gangrenosum” was discovered on my left arm and since the necrosis around this “skin ulcer” was extensive it had to be surgically “debrided”. For those interested “debriding” consisted of scooping out an inch wide area out of my left arm – even after two years and a complete healing I still carry this “hole-in-the-arm” as a grim reminder of this condition. Dressings and topical solutions were prescribed and applied on a daily basis.
As March slipped into April, the gangrenosum and the underlying colitis/IBS (irritable bowel syndrome) grew to be less of a complaint and the doctors finally thought I was stable enough to be released from the hospital with a battery of pills (8) but this was nothing compared to what was waiting for me down the line. However, I was glad that my eight weeks of hospitalization had finally ended. Luckily my health insurance company was totally supportive and stayed in the background, paying for all my hospital expenses.
Disability Issues
During this period I had no income since the disability I had applied for though my employer had not been approved yet. Also, since my apartment lease had ended in March, I had nowhere to stay. Desperate I called an old friend, Jeff in Nashua for help. He immediately offered to send me money to help with medical and transportation expenses and even called a local motel and arranged a month’s stay at his expense. He also sent me a care package filled with food, along with the cash to help with my expenses.
A Date that will live in Infamy
April 14th 1999. This is a date that will be hard for me to forget. I slept late the night before and when I woke up I was startled to find a very different view of my world. I could not see anything on the right side of the bed. Scared and frustrated at my recent medical problems, I managed to call a friend and explain what had happened and he rushed over to get me back to the hospital.
As doctors and nurses who I had just left a couple of days ago looked on with concern, an opthamologist tested my right eye, dilated and shone her flashlight down my eye – I could still see nothing through my right eye. The opthamologist instructed me to be connected to an IV of Solumedrol (Methylprednisolone – a steroid) and had me admitted to the hospital again. I was informed that I had suffered a “Retinal Vein Occlusion” which was a clot or thrombus in the central retinal vein, and they were going to pump megadoses of steroids to try and dissolve the clot but that most probably I had permanently lost the vision in my right eye.
The steroids (now a constant part of my medication regimen) continued in megadoses for a week, and then tapered down once it was obvious that we could do nothing to bring my eyesight back.
So now April whimpered into May and the dilemma of a concrete diagnosis of what was happening to me still loomed heavy on my team of doctors. Additional tests were conducted to check for HIV, Hepatitis and other related diseases to narrow down the diagnosis but they all came back negative.
Finally, it was decided that due to the complexity of my case, I was to be transferred to North Shore University Hospital in Manhasset, NY.
Chapter II: Welcome to the End?
I was greeted as a dignitary at NSUH and assigned a prominent oncologist as my primary physician. I was made comfortable in a very nice room in the Don Monti Cancer Ward at the Hospital and for the next few weeks was visited regularly by a posse of interning doctors led by my physician who asked me to repeat my tale, queried me for all sorts of information. Since the food was excellent and the cable selection was adequate I was happy to oblige. Prednisone really builds up your appetite!
While at NSUH I was further diagnosed with steroid induced osteoporosis with significant bone loss and migrating juvenile arthritis. My primary medical condition was also diagnosed as Hypereosinophilic Syndrome (a non cancerous blood disorder similar to Leukemia). My chemotherapy, which originally started with Hydrea (hydroxyurea), was changed to a new drug called Vepesid (etoposide) to keep my white blood cells down to a more normal level.
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Vijay_Nath
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