Scott's Medical Journey

Over the past year, I have attempted and failed to write this story. It’s extremely difficult for me to ask friends and family for help. At this point in time I am feeling overwhelmed and exhausted. This journey has been long and hard.

So here is the story. It’s a story about a medical condition called ‘achalasia,’ and it begins for me in 2011. I was living then in Washington and left for California to help take care of my dad, who was elderly and failing physically. In the process, I noticed my brother Scott was sick and not getting anywhere with his medical condition. The doctors in Santa Cruz, where we live, did not have the expertise to help him and he was giving up on any hope for a normal life. It was at this point that I decided I would do whatever it would take to help him. I promised Scott that I would take this journey with him and no matter what happened I would be there at his side.

At that time, I went with Scott to his doctor and we were referred to Stanford University. We met with a surgeon to go over his options and we then scheduled the first of several surgeries.

Scott was teaching music at a charter school as he had for eleven years and his first concern was keeping his job. They told him not to worry. His job was safe and he could return after surgery.

The first surgery was a subligation, -- an attempt to stimulate the esophagus. It did not work. The second surgery was similar and was a final attempt to get his esophagus to function. When the second surgery failed, Scott attempted to just live with his condition, as he had been for the ten or so years since previous medical procedures had been attempted at SFU Medical facility.

Staying with him at my Mom’s house I watched as he lost sixty pounds. He kept trying to eat, but finally could take in only liquids. We then tried using a feeding tube into his stomach through his abdomen. Still he became weaker and weaker, and I saw the signs of starvation. I knew he was going to die if we did not do something.

So, we went back to Stanford to meet with the surgeon. This time there was only one option left, -- remove the esophagus. It was not working at all, and Scott could not get enough nutrition to survive.

In the meantime, Scott’s teaching contract was not renewed and his substitute replaced him. This was devastating news and could not have come at a worse time. Scott was too weak and frail at this point to deal with this news along with the mountains of paperwork involved in billing and insurance. The surgery was scheduled and he had to have insurance.

At the very last moment and with some help from the charter school, we were able to retro the cobra coverage and, in addition, I set out to apply for disability coverage for Scott.

Because of the continuing deterioration of his health over the years when he was employed, Scott had paid over $60,000 in medical expenses out of pocket. Now, medical bills were piling up and he was slowly dying with no income. Finally, his disability income was approved, -- at a fraction of the income he once had. We were able to keep the Cobra coverage, at least through the surgery date.

` In December of 2015 Scott’s esophagus was removed successfully and the recovery period began. Prior to the surgery, we were advised as to three possible complications of such a major surgery and as luck would have it, Scott ended up with all three. The complications required three separate procedures and still one more surgery to correct.

So here is an update on Scott and where our journey is today. Today Scott weighs 169 pounds. He has regained most of his strength and he is able to eat food by mouth in small amounts and appears healthy. However, he is not ready yet for full time employment and struggles daily with an unpredictable digestive system. There is more that could be done, but the emotional strain of all the losses and fear of where to go from here is taking its toll on both of us.

The financial tally for this journey is nearing two million dollars, and there are more medical expenses to come. We all find ourselves exhausted and overwhelmed at our current situation. I estimate Scott’s portion to be close to $150,000.

His disability will end before he is ready and all resources have been exhausted. We try to move forward in a world of uncertainty. So, in an attempt to be true to my promise I have opened the Go Fund Account for the Love of my Brother, Scott. So he knows that I have done everything in my power to help him

through this journey and that I am trying to raise at least one third of the current cost in the hope that we may continue this Journey back to Health.

I’m afraid he’s lost hope. I haven’t! I still have faith in humanity. You can’t put a price on any life and all life is precious. When I think of the beautiful music Scott plays with his saxophone, and of all the students he has inspired, I know his job is not yet done. All that I have left to give is love. Please help me bring back the music that still remains to be heard from my brother, Scott. You won’t be sorry. It’s a beautiful thing. Much love to all our friends and family who have proven to love us unconditionally.