What’s the saying, “Life is a journey not a destination”? Yes, life is certainly a journey. Early last year I was in the jungles of Panama, consulting for clients, giving speeches, etc. Kids all doing great in college, wife, Michelle, enjoying her job, my wake surfing was getting better, then life throws a curve ball.
Went into the doctor with some shortness of breath. It had been getting progressively worse over time, but not enough to stop and check it out, but now it had. I had a history of pulmonary disease in my family. Found out my overall lung capacity in June 2017 was only around 50%, started being seen by a pulmonologist and went on treatments of prednisone (steroids) etc. In August had some unrelated surgery over a cancer scare – no cancer but ended up with an infection in my body that went straight to my lungs. Took my lung capacity to 24% and was hospitalized at the University of Minnesota (UofM). Left the hospital a week later, but have been on supplemental oxygen ever since. I was diagnosed with an Interstitial Lung Disease, pulmonary fibrosis and more specifically, hypersensitivity pneumonitis – a reaction most likely to black mold.
Tried different treatments, thought we had some good results at one point, but it was only the drugs artificially making me feel better – lung capacity continued to go down. Those drugs at high levels started to deteriorate my body so we started to take them down and then I crashed. Got a second opinion at Mayo and all confirmed UofM findings. Lung capacity is in low 30%’s now and falling and last resort is a double lung transplant. Without the transplant I will not survive through 2018.
As of today, March 12 2018, I have been evaluated and put on the lung transplant list at the UofM. I’m told that I’m very high on the list due to my severity, so am to be prepared to get a call any day and need to be at the U in a 2-hour window prepared for a 6-10 hour surgery for new lungs and at least 6 months of recovery. The U is a center of excellence in this field and the doctors and staff have been incredible so far. Michelle has been my rock. I have the kids and family at the ready as the journey continues to unfold.
Once I get new lungs, imagine what I’ll be able to do!?! I’ll be stronger, and I’ll be back! Stay tuned. “Row the Boat” !
CaringBridge is a nonprofit social network dedicated to helping family and friends communicate with and support loved ones during a health journey. Learn more about CaringBridge.
