Apr 30, 2020 Latest post:
Jun 16, 2020
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.
We are setting up this site in preparation of our days ahead. As many of you already know, Chuck was diagnosed with Idiopathic Pulmonary Fibrosis on Friday, July 13th, 2018 (the old superstition of bad luck sure held true that day). He was referred to the University of Minnesota in Minneapolis as they are a Center of Excellence for IPF. We feel we have an excellent medical team guiding us along with their expertise and knowledge! So begins this journey! IPF is a rare and chronic, irreversible, and ultimately fatal lung disease characterized by a progressive decline in lung function due to scarring fibrosis in the lungs. There is no cure currently for IPF, but there are treatments (medications) that may slow the progression of the disease. Chuck has been taking one of these medications, OFEV, since learning of his diagnosis. He also takes Prednisone and CellCept daily to help with inflammation in the lung. Everyone’s disease course is different...some people progress quickly, while others can live many years after diagnosis. Chuck’s disease, unfortunately, seems to be fitting in the quicker progression course, despite the medications. Oxygen therapy has become a constant need. He also has been faithfully attending Pulmonary Rehab to maintain his strength and to learn ways to manage his symptoms. He has also been managing to work full-time so far. Early on in his care, lung transplant was mentioned as a possible option when the disease becomes more severe. He went through a solid week of pre-transplant testing in December 2019. We met again with the Transplant Dr. In early February at which time it was decided that another heart catheterization was needed. That was done in mid March and it was found that Chuck would also need a 2 vessel Coronary Artery Bypass Graft in addition to the Bilateral Lung Transplant. It was decided by the Transplant Team of Drs that Chuck would remain eligible for transplant as he was in good physical condition, working very hard at Pulmonary Rehab, despite the additional major surgery. The day he was set to be listed with UNOS, the Covid-19 pandemic caused the U of MN and many other Centers of Excellence for Lung Transplants to “inactivate” their Transplant list! Over the next month, it became clear that Chuck’s disease progression was NOT going to stop for this virus! He was placed on the UNOS Registry for a Bilateral Lung Transplant on April 23rd, 2020! We were so grateful! Around noon on April 25th, Chuck was taken by ambulance to Sanford ER after suffering oxygen saturation’s in the 40% range, with normal for IPF patients to be 90% or above! They got him stabilized with high flow oxygen and Bipap, ran a Covid Test, which was negative, and planned transfer to the U of MN via Air Ambulance. He is currently at M Health Fairview-Hospital East Bank ICU in Minneapolis.