Apr 15, 2016 Latest post:
Mar 19, 2019
Welcome to Dave's Story! Please feel free to leave messages and sign the Guest Book. Dave was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) in July of 2011 at the age of 50. Neither of us were familiar with this disease, but were horrified when we started reading about it on the Internet. Pulmonary Fibrosis claims an estimated 40,000 lives annually, which is roughly the same number as breast cancer or prostate cancer, but for the most part is one of the least known covert killers in the US. Dave's symptoms started with a dry cough, fatigue which were diagnosed as many things including a sinus infection, bronchitis, and pneumonia initially. A chest X-ray was finally ordered, and he was referred to a Pulmonologist. After additional tests were ordered he was diagnosed with IPF, but encouraged to have a complete workup at National Jewish in Denver, CO. Idiopathic (meaning no know cause) Pulmonary Fibrosis is when for unknown reasons the body produces excessive fibrous scar tissue (or fibrosis) in the lungs. The course of the disease is highly variable and unpredictable. Dave and I went to National Jewish in October of 2011 for 4 days of tests which were extensive. In essence they try to diagnosis you with anything else (Rheumatoid Arthritis, Scleroderma, Lupus) before handing out the diagnosis of IPF. Dave was seen by a number of highly skilled professionals at Jewish National, but in the end they confirmed the diagnosis of IPF. He was started on oxygen at that time for night time use, and we continued to go to Denver every 4 to 6 months for follow up. After getting over the initial shock of the diagnosis, we decided we couldn't just wait around for IPF to make Dave another statistic. At that time there were no drugs approved by the FDA to treat IPF, but there were a number of drugs in trials. We went back to National Jewish in January 2012, to get enrolled in a study of a drug that was being used in other countries. At that time the drug was called Pirfenidone, but due to there not being parameters in the study for Asians, Dave did not qualify because he was deemed as having too good of lung function at the time. At that time Dave started looking at other studies being completed nearby, and called about another drug trial on a drug at that time called Nintedanib. Dave was approved for that trial and started on the medication in March of 2012. He knew immediately that he was on the true drug and not a placebo, as there are many digestive side effects which he quickly started having. Since then both of these drugs have been approved by the FDA to slow the progression of IPF, and currently Dave is taking both. We both felt fortunate to have the care and expertise of the doctor at National Jewish and the drug study doctor in Phoenix. Overall Dave did well for the first 3 years of having IPF. He had a slow decline in his lung function, and continued to use oxygen mainly at night. Throughout all of this Dave has continued to work full time for Ernest Health, and traveled often for his job and for our many trips to Denver and Phoenix. In 2015 Dave's disease started to progress at a much quicker rate. He started having to use oxygen most of the time, and had a hard time keeping his oxygen sats over 85 with even the slightest of activity. We were referred to St. Joe's Hospital (Dignity Health) in February 2016 by the doctor at National Jewish for a pre-lung transplant workup. His DLCO (Oxygen transfer to blood) was at 24% which greatly worried the surgeon who saw us that day. She agreed to let us go on a prearranged trip to Aruba to celebrate our 26th wedding anniversary, but after that did not want Dave flying anymore. She also strongly encouraged us to come back for a full week of tests to see if Dave was a candidate for a double lung transplant, which we did the last week of March. The tests were grueling, but from what we could glean is that Dave is in very good shape except for his lungs. He should be conferenced by the transplant team this coming Thursday (4-14), and we should know the full results of all the tests and if Dave will be listed. Once he is listed they would prefer we move to Phoenix as their typical waiting time for lungs is 15-30 days. Once he receives a transplant there is typically a 12-14 day hospitalization, and from the time of his discharge we need to be able to stay in Phoenix for a minimum of 4 months. We were able to secure a fully furnished condo to live in that is right across the street from the hospital while we were in Phoenix at the end of March. As this journey proceeds I will continue to update this site so everyone can stay up-to-date with Dave's progress. Your kind words, warm thoughts, and many prayers are greatly appreciated!