Pat

My name is Pat. I was diagnosed with Scleroderma in 1976!!!! At that time was working in the Emergency Room at Kaiser Hayward as a Registered Nurse. My hands would turn blue, get sweaty, but, I thought it was just O.K. Going to a freezer to get things out really blanched my fingers. One of the doctors noticed my hands and suggested that I see a Rheumatologist, which I did. Her diagnosis was ¡°Early Scleroderma¡± At that time I felt that I was O.K. and could cope. I think I was in denial. Around 1999 or so a friend told me about the article in the Fremont Argus about Scleroderma. I t mentioned the Support group. I was hesitant to join, but I did. In 2000 my Pulmonary doctor told me to start using oxygen when I exercised, by then I had interstitial lung disease. So I started using the oxygen when I used my treadmill. I was still working and going to school. In 2002 my husband and I went to Lake Tahoe for the weekend. We DID NOT take the oxygen along. While there I became very ill, couldn¡¯t think straight, my hands were getting discolored. So we came back to the Bay Area. That was on a Sunday, the next day I thought I was having an asthma attack or had bronchitis (ever the nurse). When I saw the doctor he immediately admitted me to the hospital, I had pneumonia. I was put on a ventilator for a week, my diagnosis was pneumonia and ARDS (Acute Respiratory Distress Syndrome) I know that I am lucky to have survived that episode. My husband was and is very attentive. My husband, friends, family and the Scleroderma Support Group prayed and gave positive thoughts for me and I will be forever grateful for their support. I do take D-Penicillin and other medications for hypertension. I did a course of Cytoxan for 1 year. At present my Pulmonologist and Rheumatologist say I am stable I have now retired from working as a Registered Nurse and am on disability. I am using oxygen about 12-24 hours a day.

 

Upcoming Events

No events

Newsflash

If you have Scleroderma AND cancer, there is evidence that radiation may exacerbate your Scleroderma. You should check with your medical providers before treating with radiation therapy.