Mom’s Story: No More Cliff Diving, Part Two

Note: While I am posting this on Mom’s behalf, she wrote it. No one can tell her story as well as she can.

You can read part one here.

I continued working but was diagnosed with neuropathy, and then started having kidney problems. It was on a CAT scan of my kidney the doctor happened to see the bottom part of my right lung. I was told I needed to have it looked at. I did and was told I had some fluid in my lung. A blood test showed an elevated white blood cell count. The doctor gave me an antibiotic, and that was that.

Finally, with all my other symptoms the pulmonary doctors decided to do a bronchoscopy in May 2013. I was told the results showed inflammation in the lungs and scarring. Many months later when I had to acquire medical records for disability I saw the pathology report and it said findings of IPF (Idiopathic Pulmonary Fibrosis). I was shocked because the doctor NEVER said IPF. I was still having problems and noticed over the next several weeks I was winded when climbing stairs. I was now having second thoughts about this doctor and his lackadaisical attitude towards my symptoms. Keep in mind, I still did not know it was IPF! He continued to treat me with prednisone.

In July, I ended up in the hospital due to a reaction to an immunosuppressant the pulmonary doctor started me on for inflammatory problems. While there I saw another doctor from the practice. He was filling in for my regular doctor and I really liked him. He showed great concern for my long history of illness. I again returned home only to be back in the emergency room about ten days later. I thought I was having a heart attack because I could not get a deep breath and my chest felt heavy. I went down to the basement at work and could not climb the stairs back up. I finally made it and called the doctor.

I was a mess! It wasn’t a heart attack, but my heart was enlarged from extremely low potassium and hypertension from low oxygen and muscular atrophy. All of this was attributed to the high levels of prednisone I was taking to keep the inflammation at bay. Like I said, I was a mess! Oh and did I say I felt like shit, almost to the Dr. Kevorkian stage. This stay in the hospital was the first time I heard the scarring in my lungs referred to as fibrosis, and that it was not good, but no one really stressed how awful the diagnosis was. A lung biopsy was likely in my future, but I needed to get back on track first and get stronger because it would be a serious and risky procedure.

Again I went back to work for two weeks and then went on the yearly family vacation to the beach. I figured I could be sick at the beach as well as at home. I was so sick my parents, who are in their 70’s, were helping me up stairs. I knew my working days were short lived and it only added to my grief.

I went back to work and within two weeks it was a mutual decision with my wonderful employers I was doing myself no good. To this day, a year ago now, it is the one thing that brings me to tears when I talk about it. They gave me a wonderful severance package which took some immediate worries off of my husband and I. I can never say enough about their compassion and support. A call from them cheers me up on my worst days.

Read part three.