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Jan 16, 2019 Latest post:
Feb 16, 2019
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
On December 28th, our dad was taken to the ER with extreme difficulty breathing. He was admitted to Christiana Hospital and had chest X-rays, CAT scans and numerous vials of blood drawn for every test imaginable. Test after test came back negative and the doctors settled on ‘infection’ but could not agree on whether it was viral or bacterial. As a precaution, IV antibiotics were given and after 5 days, he was released. Within 2 days, he was back in the ER and on oxygen.
The doctors performed more tests, X-rays, CAT Scans, a finally a bronchoscopy, a procedure where a tube goes down the nose and into the lungs to gather fluid and tissue samples. He was now being seen by Pulmonology, Infectious Disease, Internal Medicine, and a Hospitalist, who oversaw his care. Still no answers.
Christiana Hospital has a committee of various doctors that meet twice a month to review lung cases. Dad’s case was reviewed, Rheumatology got involved, and a diagnosis was made. He has Myositis/Antisynthetase Syndrome. It’s a rare auto-immune disease that affects 1-8 out of 1,000,000 people. We always knew he was 1 in a million. Antisynthetase Syndrome is a chronic autoimmune condition that affects the muscles and various other parts of the body. In Dad’s case, symptoms include Interstitial Lung Disease.
We are fortunate that Johns Hopkins has a Myositis clinic dedicated to this disease. The wonderful doctors at Christiana Hospital have conferred with Johns Hopkins and together have started him on a care plan.
He is still very sick and his body is fighting hard to get better. He is still on oxygen, steroids, and an immune suppressive drug. He is getting better but it will be slow. The head of the Johns Hopkins clinic said “This disease is SLOW to respond, but it DOES respond”. We just have to be patient.
His amazing wife, ‘Nurse Carolyn’, has been by his side in the hospital every day and every night. The hospital staff loves her, checks on her, brings her food, and brought in a recliner to sleep in because they knew she wasn't going anywhere. Carolyn knows you all love them but she does ask for no visitors. His immune system is weak and they really can’t risk infection at this point.
Please keep him in your prayers. We will try to keep this page up to date. Please leave messages and we’ll make sure Carolyn hears and sees them.