NEW DOCTORS
All these years I had been travelling about 50 miles one way to see my doctors. It was starting to take its toll. I decided since my Rheumatologist was talking of retiring (and so was his nurse of about 30 years) it was time to find new doctors a little closer to home.
I found a wonderful Primary Care Physician (Dr. Wang) only a few minutes away from our home in Keizer. Wow! It was great not to have to plan a full day around a 15 minute doctor appointment. Dr. Wang referred me to one of the 2 or maybe 3 Rheumatologists in the Salem area and I began the task of trying to build that doctor/patient relationship that is so important to someone with a chronic illness.
Dr. Han (my new Rheumatologist) monitored me quite closely and tried some new medications to ease the acid reflux. For the first time in many years, I was able to eat and drink almost anything I wanted. He diagnosed me with Interstitial Lung disease and after about a year he told me there really was nothing left for us to try to ease the symptoms of the disease. He thought I might now have Pulmonary Hypertension (high blood pressure in the lungs) and explained the one test they do to diagnose that. He then referred me to a Pulmonologist (Dr. Cummings) in the Portland area.
I met with Dr. Cummings several times. I don’t remember the precise chain of events but, during one of our meetings he asked if I had ever been approached regarding lung transplant. I told him honestly I had not and mentioned that I didn’t think I would be a candidate due to our financial status, the many years of Scleroderma and my thoughts that the Scleroderma just might “invade” the new lungs. On a subsequent visit he again asked the question about lung transplant and said it was something we probably should discuss and I might want to consider. After having the test (called a heart catheterization) to determine if I, indeed, had Pulmonary Hypertension (the results of which showed “mild to moderate”), Dr. Cummings explained that transplant was the only option left to me and I needed to think seriously about the choices available. Having a lung transplant, he said, requires a complete change of lifestyle. Little did I realize how right he was!
After discussions with Al, my other family members, and a lot of time spent looking at how far I had already travelled on this road, I chose to be evaluated to see if I would be an acceptable lung transplant candidate. Dr. Cummings referred me to Dr. Raghu, a pulmonary specialist for the lung transplant team, at the University of Washington Medical Center (UWMC)..
To continue my journey with me click here. (Tests and MORE Tests)