Ken

Michele and Ken

March 16, 2001 - Hi, my name is Michele and my husband Ken, 39 has Scleroderma. He is currently in the ICU with fluid on his lungs and around his heart and having difficulty with his kidneys. He was working as a software engineer until a week ago when he just felt too weak to go to work. It got progressively worse until I talked with his Dr. who told him to go to the hospital. I am an RN, but this is hardly my specialty. I work as a Neurosurgery Coordinator at our Children's Hospital and frankly had never heard of Scleroderma (perhaps once in passing in nursing school).

Ken's symptoms, we feel, began about two years ago when he noticed some tightness in his achilles tendons, but really thought little of it. About 6 months later he developed swollen hands and Raynauds. I kept insisting he go to see a Dr., but we were dealing with a bit of a crisis with my health and he put it off. About a year ago he finally saw an internal medicine physician who could not diagnose him, but was smart enough to send him to a Rheumatologist. The Rheumatologist diagnosed it immediately, but did not know which type at this point. Ken began taking Vioxx for the inflammation which seemed to help. Then six months ago he had an episode where he had difficulty breathing and started getting tachycardia (fast pulse rate). His Rheumatologist sent him to a cardiologist who did not find anything unusual after doing an Echo cardiogram, He then referred him to a pulmonologist who did several tests and though he had slight pneumonia and treated him for that.

It was about this time that I found out about a Dr. Phillip Clements at UCLA (we live abut 150 miles south in San Diego) whose primary patient load consisted of Scleroderma patients, however, I could not get an appointment with him until the end of January this year. Well when we finally did meet with him he enlightened us greatly about the disease. First he told use that tachycardia is a side affect in about 20% of patients and they don't know why, but that it would eventually slow down. Then he looked at the studies we had already had done and immediately recognized some of them as fibrosis in the lung and that we needed to have a test by the pulmonologist to check for inflammatory cells before starting on Cytoxan. We did that with one up at UCLA who sees many of Dr. Clements patients and it was a positive diagnosis. That was two weeks ago and he started the Cytoxan a week ago when he developed worsening shortness of breath and fatigue.

That is where we stand now. He is has a breathing tube in ICU and they are doing everything for his fluid buildup. They also believe he has some kidney involvement and are treating him with ace inhibitors. They have taken him off the Cytoxan for now and started him on steroids. I am at his bedside frequently, although we have a 2 1/2 year old daughter and I have a 9 year old son from a previous marriage which I need to tend too. My thoughts and prayers are always there with him though.

One thing I have to say though is that Dr. Clements at UCLA spent an unprecedented 2 1/2 hours talking with us about the disease, what is available and about Ken's specific problems. He was incredible (just difficult to get in to see). The Dr's down here in San Diego have been incredible too. They have consulted with the Dr's at UCLA and have done much research into the process of this disease and how to treat it.

Thanks for letting me share my story with you.

March 30, 2001 - Ken passed away from scleroderma complications today at age 39. Things progressed so fast that he just went into complete organ failure. He was in the ICU for 2 1/2 weeks and then died of respiratory failure. I know he is not longer in pain and I am thankful for that.

Michele - mminot@home.com