The story of Janice

In February 2021, Arkansas had a two day snow event. We ended up with a total of 18 inches over the two days.
My husband has back problems so I decided to shovel the driveway with the help of my neighbors.
That night my lower right back (flank area) started hurting. I use the heating pad on it and the pain went away. The next day the pain returned and the next few days it kept getting worse.
I made an appointment with my PCP and he was leaning toward maybe appendicitis but I was not having the normal symptoms associated with appendicitis. All of the test performed came back negative for an infection. He told me if I started having a fever, vomiting, or severe pain to go immediately to the ER. I never developed any symptoms other than the lower back pain, weight loss, and appetite loss.

I knew something was not right with my body. I went back to my PCP and insisted on a CT Scan. He scheduled the scan at a local hospital the next day and told me to come back to his office that same afternoon to go over the results.
When I saw the look on his face when he walked into that exam room I knew something was wrong. My first thought was I have cancer. He told me the results showed that I had a very rare disease called Retroperitoneal Fibrosis. He told me that the fibrosis was obstructing my right ureter and causing hydronephrosis (swollen kidney).
He told me he heard of RPF in medical school but he had no idea how to treat it. He immediately scheduled an appointment for me with a Urologist. After seeing the Urologist and more scans, he scheduled surgery to place a stent to open up the ureter and help the kidney drain. He prescribed 30mg of Prednisolone for about 6 months. After 6 months the scans showed the mass had shrunk and he removed the stent and started to taper me off the steroids. The last scan in December 2021 showed that the mass is not growing and the kidney is working but draining slow.
My advice to everyone, pay attention to your body, don’t take I don’t know for an answer, and insist on CT Scans, MRI, or a second opinion.