Note: While I am posting this on Mom’s behalf, she wrote it. No one can tell her story as well as she can.
My next step was to file for disability. I had to acquire my gimongous (yep, a word combo, like “framily”) stack of records. The only good thing to come from this diagnosis: after my 6 month wait for benefits, they automatically gave me my disability.
I didn’t experience any of the nightmare stories of being denied and having to get an attorney. The reason is this disease is on their fast track list, meaning you are terminal and might die before you get benefits if they proceeded as usual. I had my first job at 14 and have worked all my 56 years and paid into the system, with the exception of several years when I stayed home to raise our children. Of course when I did work I made below average wages due to education and just being female (which is another issue entirely). It was only in the last 12 years where my income has been commensurate with my experience.
My disability check is less than 1/3 of what I was making. Needless to say when you get ill, the bills only increase. We still have the same ones we had before. Then add medical deductibles and things insurance doesn’t cover; you need more money not less.
In December of 2013 I went for the lung biopsy and final confirmation. I knew they would have to collapse my lung and put me on a respirator. A lot could go wrong and I was very scared. We all were. I did well, but the pain was horrible and I was in intensive care for several days. The news was not good and I had the feeling it wouldn’t be.
In February, Don and I drove to Vanderbilt in Nashville to see a doctor about a future lung transplant. I had been having sharp stomach pains on and off for two weeks. I thought I had a kidney stone again and I was not about to let the appointment slip away as we felt lucky to get in so quickly. The night before the appointment, I was in so much pain I was afraid I could not do the 6 minute walk test as part of the exam.
The doctor at Vanderbilt was very pleased with my condition and gave me a check list of things I must do. I was never so ready to go home after walking all day in pain. Then, the doctor said so matter of factly, “Oh by the way, the doctor who read your lung scan saw a dark area in your upper stomach. He is not sure what it is and wants you to go to the emergency room.” I knew nothing is ever simple with me and decided to go home. I did not want to be in a hospital four hours away if something was seriously wrong.
The next day my primary care physician sent me for scans and it was determined I had a very large cyst on my colon. I needed emergency surgery to remove the infected cyst. My colon was very inflamed. I needed a colon resection, a surgery that could take five or six hours, which was a concern because of the condition of my lungs. They decided to put a drain in first to remove infection. I was in the hospital for six days. Then, I was at home with a drain for two weeks. I had the surgery after that. It was so painful and took weeks to feel better. I had to nurse an incision with 22 staples and even now, more than 5 months later, my stomach is tender. But my lungs held up great!