Again I've been seriously lax in updating. Once you read this post I think you'll forgive me. When last I wrote I was fresh out of surgery to fix a rare syndrome. My surgeon wanted me to call his office when we'd reached eight weeks out from that surgery, at which point we'd move on to other surgical options if need be. I am very goal oriented so I went so far as to put a calender entry on my phone for August 16 that read "Call Dr. B." It wasn't that I had no hope that this surgery was going to help. It's because I am a realist. This realism extended to my telling my boss that I would most likely be out for more surgery in the near future.
I struggled through July. Zofran was officially useless to me. I lived off of Jello and juices. My cough was ever-present and bad enough that I was resorting to my nebulizer at least twice a week. I was slowly losing patience , and hope.
As soon as August rolled around, I could see the light at the end of the tunnel. I only needed to hold on a little while longer, then we could make a plan. That optimism lasted about a week. After a morning of such intense cough that I was afraid I'd crack a rib, I gave in and called Dr. B's office. I was so desperate for answers that I also emailed Dr. Lungs and called my GI and left a message. Dr. B. called back himself later that day. He agreed that we should move forward with the gastric nuerostimulator,, We weren't sure how long it'd would take to get insurance approval for the device, but at least we were moving forward. I made it through the day at work and was on my way home when the phone rang. It was my GI. After a long conversation, it was decided that I should see an ENT next. Alright then.
A little over a week later as I was leaving my first ENT appointment, I saw the voicemail icon flash on my phone. It was Dr.B's assistant. I frantically called her back. She told me that my primary insurance had approved me for the stimulator! I could tell by the way she said it that there was a catch. Sure enough, my secondary insurance had declined to fund the device. What had started as such a positive conversation had quickly turned into a near-nightmare scenario. I knew that I needed the device. I also knew that it wasn't going to be easy to afford the 20 per cent that would be my share of the device. Since I was nearby, I ran over to the surgeon's office where they had the diagnostic codes for the device ready for me. In the lobby, I called my insurance company. Here's a tip: crying gets you nowhere fast with insurance companies. Especially this insurance company. They confirmed that they did not in fact cover the device, even when primary insurers did. Fantastic.
After a minor freak out during which I was certain that I would never get the stimulator, I made a plan. I would call the manufacturer and ask them how mush the device cost. Then if all else failed I would call the hospital. The next day, I called the manufacturer and the hospital. Neither entity could tell me anything useful. The manufacterer because the price they charged hospitals wasn't the final price I'd see because of markups by the hospital. The hospital seemed utterly deserted since I couldn't seem to get out of Voice Mail Purgatory the day I called. This was a Friday. Over the weekend I made the decision to schedule surgery on Monday. The rest would work itself out.
So on Monday I scheduled surgery with Dr. B.'s office for September 24. That was just over six weeks away and two days before my twenty-seventh birthday. Yes, that would mean my birthday might not be the most fun day, but I could think of no greater gift I could give myself than the possibility of feeling even halfway normal. I told my bosses the plan, my mom booked tickets to fly down to be there with me and I tried to temper my excitement. It was more difficult than it may seem. Every story I heard or read about someone with a stimulator, it seemed to be the key to turning lives around. Soon that could be me.
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