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7/27/2016 Latest post:
Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most. Drew was diagnosed with rheumatoid arthritis at the age of 23. An aspirin regiment up to 23 aspirin per day would be prescribed. Over the years he would take numerous medications to combat the pain and fatigue which became a part of his everyday life. Some of the treatments included gold injections and cortisone. The drug that seemed to help him the most but also caused the most damage to his lungs was methotrexate. He was on methotrexate for 17 years up to 8 tablets a week, a pretty high dosage. It kept his pain at bay until about 6 yrs ago when he began to feel extremely fatigued and the pain became almost unbearable. He consulted a new rheumatologist. At that time his breathing started to worsen. Numerous tests were performed and everything came back normal until he had a pulmonary, cardiac functions test. He didn't last 2 minutes before his oxygen level became dangerously low. It was determined he needed a lung biopsy to determine what was wrong. At that time his lungs were working at 70 percent. After his lung biopsy his lung function went down to 40 and quickly crept down to 30percent where he is now. A diagnosis was made Interstitial pulmonary fibrosis and rheumatoid lung.
After a trip to Mayo he was given a plan to get him off the massive amounts of steroids his pulmonologist had put him on. He was also put on an infusion plan to control his arthritis. It was felt at that time if his arthritis was under control his lungs would not progress. It helped for awhile. Last winter was a tough one and Drew sought out a new pulmonologist. He listened to Drew's lungs and assessed his disease and gave us the news we had heard before. Drew would need a lung transplant to save his life. Froedert would not be a match so he began sending Drew's records to many hospitals. Mayo clinic who had helped him get somewhat healthier refused to take on the transplant. So we ventured to Chicago University hospital. After his case was brought before the transplant board we were told he would need a heart cath. Once again we went to Illinois to have the cath. Drew, Mandi, Christy and I left that hospital thinking he would get a transplant. No problems with his heart. Three days letter another call another rejection.
A week later Loyola University Hospital called. They wanted him to come to Loyola to discuss a possible transplant. Drew point blank said if they didn't think he had a great chance he wasn't coming because he had been through enough. The disease was worsening and he was tired. After three weeks we heard from Loyola. They would need an EKG even though he had had many and a current stress test. If they were good it "might" be a go. We waited seven weeks for an answer and finally heard the answer we wanted to hear. You are a viable candidate and we will accept you as a transplant patient. Many tests must be done before he makes the National List but we are confident.