February 2023

      At the start of February, I was continuing to work hard on eating and drinking in order to get off tube feeds. I was also walking around the halls with my parents as much as I possibly could. I think I was the most frequent walker around my unit, B4/6. It seemed that as soon as I could eat and drink enough, I would be discharged back to the apartment where I would stay for about 2 weeks before going back home. However, this perfect plan was quickly disrupted when I developed a severe pain in my lower right quadrant that I hadn’t had before surgery. The pain rapidly grew to be excruciating to the point where I was sobbing. I also soon realized that I had once had a pain similar to this one, when I had an ileus after my last surgery. When the doctors came by, I was crying from the stabbing, nauseating pain, and I begged them to do an X-ray, as I was sure I had an ileus.

      A few hours later, I had an abdominal X-ray, and sure enough, it showed dilation of my bowels and an ileus, or temporarily paralyzed small intestines. I was put on complete bowel rest, meaning no eating or drinking, and bile and stomach contents were drained out of my G tube in order to decompress my stomach and bowels. I was completely miserable, so we had to restart some of my pain medication that I had been on right after surgery.

      While dealing with the ileus, I hit the two week mark of being in the hospital, and the IJ (intra jugular line) that I had for vein access had to be removed. This meant that I would need a PICC line, which can stay in for long periods of time, placed in my arm. They decided they would place it bedside, instead of in Interventional Radiology, which made me nervous, but I agreed. They set up all their equipment and numbed up my arm. They decided to place it in my right arm, which was the same side as my previous PICC line and IJ. They got the line up my arm when I suddenly felt a horrible pain in my shoulder. I began to cry as they continued to push the line. They said they must have been hitting scar tissue from my old PICC line but kept trying. It hurt so much. I held my mom’s hand and tried to distract myself, but it hurt too much. They tried for an entire hour, but ultimately decided they wouldn’t been able to place the line. This experience was so painful and scary, and I was so happy it was over, but knew they would have to find a way to place one soon.

     Luckily, my brother came to visit that weekend which was a great distraction from the painful ileus and stress of being in the hospital. Another way we passed the time was going on adventures around the hospital in the wheelchair with my mom. We even went outside where I got to touch the snow that I had watched fall down out of my window. Feeling the fresh air after two weeks inside the hospital felt so great!

      My X-rays continued to look worse with extremely dilated bowels. It got to the point where we were concerned about a perforation. My doctors decided we need to do a CT scan to see if there was an obstruction or something like fluid in my abdomen that could explain the persistent ileus. However, it showed nothing. Luckily, with the starting of some medication, the ileus slowly began to resolve and I finally felt a little better. I could even eat and drink again, so things were slowly improving.

      I still needed new vein access and to remove the IJ so a PICC line placement in interventional radiology was scheduled. This time I would be given some sedation and they would have access to better technology for the placement.

     On the day of my PICC placement, I needed some fresh air so my mom and I went outside. Once the elevator reached our floor on the way back to my room, it dropped a few inches, and then went back to the floor beneath us. Two construction workers got on and we told them what had happened. They said they would ride back up with us, so we weren’t scared. On our way back up this time, we were with the construction workers, a speech therapist, and a psychiatrist. This time, upon arriving on my floor, the elevator dropped again, but instead of going to the next floor, it stopped. We tried every button, but nothing worked. The psychiatrist called the emergency line and they said they would send someone to help us. My mom was calm, but I was not. I was sure we weren’t going to make it out alive. But about 15 minutes later, a worker pried the doors open and we made it out. I thought the day couldn’t be any worse, but then we found out my PICC placement was cancelled until the next day. Truly an experience I’ll never forget.

      My PICC placement the next day went great. I fell asleep for most of it after getting some medication so this time it wasn’t scary or painful, and my nurses were great.

      Unfortunately, this is when a new pain began. This new pain was right above my transplanted kidney. It felt similar to my NCS pain, meaning it was sharp and sometimes crampy, but on my right side now. We ran another CT to see what was going on, but the doctors said the results were normal. They told me this was just intestinal pain and I needed to go back on bowel rest but I insisted it was my kidney.

      The doctors ordered one last test to check my kidney. In this test, radioactive tracer was injected into my PICC which went to my kidneys. I was then given medicine to empty my kidney and they watched the tracer move. I could tell by watching the images that something was wrong with my transplanted kidney, and I was right. My transplanted kidney was not emptying due to an issue with my ureter near my bladder. Since it wasn’t emptying, urine was backing up into my ureter and kidney, causing swelling called hydroureter and hydronephrosis. The doctors confirmed this as the source of my pain but said it should resolve on its own and we would check on it with an ultrasound in 10 days.

      With the source of my pain identified and a plan of when to check on it, I was discharged from the hospital after 32 days! I said goodbye to my amazing nurses, doctors, and nursing assistants and finally returned back to the apartment. It was so nice to sleep in a quiet room with a big bed and no interruptions.

      The next day, once I woke up from a nap, my mom said we needed to go to the airport to get a safety check on the rental car since we had been using it for so long. However, when we got to the airport, instead of seeing a rental car employee, one of my best friends was waiting for me! She had flown up to visit for a few days and it was the best surprise ever! We spent the next few days coloring, playing games, watching TV and movies, and eating some fun Wisconsin foods together. We also went to the university bookstore and got some Wisconsin clothing for us and our families. I had the best time and am so happy I got to see her.

      While I had a great time with my friend, I had started to get much sicker while she was visiting. I began to throw up and have severe pain flares with my hydronephrosis and hydroureter. We had a bad feeling that something was wrong, but we would have to wait for the follow up imaging.

*Note- we found the issue and know how to fix it. All will be ok!