Just in case you've wondered where I've been...
Optic/Brain MRI
Brain activity test
30 vials of blood
10 + chest x-rays
CT Scan of chest
CT Scan of abdomen
4 EKGs
Heart MRI
Heart Ultrasound
Continuous heart monitor
Bronchoscopy (lung biopsy)
Pneumothorax (collapsed lung)
Overnight hospital stay
Chest Tube
Trip to University of Alabama Medical--Callahan Eye Institute
Numerous vision tests
Average of 4 doctor's appointments/week (62 miles round trip each)
Midnight medical Googles on the computer
Scrutinizing an inch of medical reports
4 daily pills
Lots of uncertainty
Lots of anxious waiting for results
Lots of prayer
This hasn't been for me...
And we haven't done it alone...
Both my Dad & Mom came to town for a week each to help with childcare so we could focus on appointments. Cannot express our gratitude and truly don't know how we would have survived otherwise.
Additional family and friends have showered us with support and prayer.
A close family friend who is an exceptional radiologist generously offered to view all images and confer with his team. He has helped us navigate these scary waters and make sense of medical 'talk.' He calmed me when I called in tears after Ryan was experiencing excruciating pain from the chest tube. We continue to email and his input is invaluable to us.
This started 2 weeks post-deployment with an annual eye exam when they discovered swelling on his optic nerve. This snowballed with test after test where it was discovered he has reactive lymph nodes in his lungs and granulomas. His liver is also enlarged and 'stone-like' spots on the back of his throat. Currently, they are unable to correct his vision in his left eye and it is rapidly worsening. He has a constant blurry 'cloud', muted color vision and poor peripheral.
Ryan has been diagnosed with Sarcoidosis. It is an inflammatory disease. Although, still much is unknown about it, researchers believe there is a genetic pre-disposition which is then triggered by an external catalyst. Since it starts in the lungs it is believed to be something inhaled: toxins, virus, bacteria, dust, chemicals. While nobody can pinpoint the exact cause it is intriguing that Kabul (where he was deployed) is one of the most polluted cities in the world (http://www.wyden.senate.gov/download/?id=755c9ea3-619e-4204-a7b9-06e5271c7bb7&download=1).
Sarcoidosis can affect any organ in the body but most commonly the lungs and eyes. However, his eye is presenting itself in an atypical manner to Sarcoid so still more testing to determine if swelling is due Sarcoid or something else. There is no cure for Sarcoidosis but symptoms are quite treatable with Prednisone. Most often it will eventually go into remission. It can reoccur at any time or never again.
Ryan has quite a team of doctors: Neurologist, Pulmonologist, Cardiologist, Ophthalmologist, Neuro-Ophthalmologist and of course all the Radiologist who have read his images.
He will need this team for the rest of his life to monitor the disease with regular exams. Currently, his eye is the most distressing issue. He will go back to UAB in Birmingham the end of September with hopes that the prednisone is effectively reducing the swelling. It is unknown if his vision will restore.
Overall, there are many, many more difficult diagnosis' to receive.
We feel blessed this diseased can be managed.
We feel blessed with a wonderful team of doctors--particularly our Pulmonologist who is FANTASTIC and has claimed himself our 'quarterback.'
We feel blessed to have access to medical care and testing.
We feel blessed that his new commander (he started a new job after his deployment--the eye swelling was discovered his first day back to work) is compassionate and accommodating with all the missed work for testing/appointments.
And we feel blessed to have you all, our dear family and friends, whose support seems unshakable after you've carried us through the deployment and now summer.
Currently, we only have 4 appointments for the whole month of September so we are looking forward to life starting to return to 'normal.'
