Aug 23, 2019 Latest post:
Oct 30, 2019
Welcome to my CaringBridge website. I am using it to keep family and friends updated in one place. I appreciate your support and words of hope and encouragement. Thank you for visiting.
Approximately 30 years ago I was diagnosed with Lupus, an illness whereby my own immune system attacks my healthy tissue. It sees some of my cells as 'not self' like a cold or virus. Obviously problematic. I experienced lesions on my chin and other areas of skin which was the first signs. I started a preventive medication and for the next 28 years I was without symptoms. In the summer of 2017 I became very fatigued over the course of about a month. A kidney biopsy was done and I was diagnosed with Lupus Nephritis or inflammation of the vessels and tubules in the kidney which filter waste from the body. Fortunately, my kidneys responded to an immune suppressant drug and remission took hold. I was great until about six weeks ago. Starting in early July I started to lose my appetite, drop some weight, have a wet pillow when I woke up in the morning, and started running a low grade fever. It felt like pre-flu. On Thursday Aug 8th I started coughing up some red fluid so I went to the ER. I was admitted to intensive care for a couple days and a lung scope was performed. I was diagnosed with DAH - diffuse alveolar hemorrhage. The small blood vessels in my lungs were inflamed and leaking blood. So, IV steroids helped for a few days and then pill steroids but I felt sicker. I lost confidence in the treatment at the VA and left and went to the Mayo Clinic in N Phoenix. While there I continued to get a little sicker until things stabilized and I was finally discharged after a total of 14 days in the hospital. I am now following up with some specialists at Mayo to treat this. DAH is a very rare complication of Lupus - about 3% of Lupus folks get it. Damn the luck. It's not something with a ton of research on it but there are some treatment protocols that are getting more and more successful. We're learning on the job so to speak. Prior to the use of the chemo drug Cytoxan 30 years ago, the prognosis would be dire. That is not the case today thank goodness. I'm starting with a drug called Rituximab that has shown a lot of promise treating this Lupus related vasculitis. For now I'm stable at home on oxygen. I'll do my best to keep folks updated in this centralized way. I know people want to know what's happening and I want to keep you all updated.