March 2023

      I started March in severe pain and with symptoms I had not had before surgery. I was sure that something was wrong and felt like it was unlikely that my hydronephrosis had gone away and that there was still an issue with my ureter not emptying properly. Ten days after my diagnosis of hydronephrosis, it was time for my follow up ultrasound. The ultrasound was quick, but I could tell that something might have been wrong since the tech kept asking me if I felt ok. This is something they do a lot when they see something and know that you feel sick.

      Within two hours, the ultrasound report was in my chart, and my mom and I could read the results. It said that not only was my hydronephrosis and hydroureter not gone, it was getting worse! This made me feel better because I knew something was wrong and the results confirmed my pain was something real. However, this happiness faded quickly when my surgeon called two hours later. He said that my kidney was severely swollen and I needed to get a tube placed in my kidney to drain it. It is called a nephrostomy tube and it goes into my kidney and is attached to a bag on the outside of my body that collects urine. He said they would also perform a nephrostogram which is a type of imaging where contrast is injected through the nephrostomy tube and goes into my kidney and down my ureter, allowing them to see how things flow and where the narrowing is. He said I needed to go first thing in the morning for bloodwork to make sure I didn’t have kidney damage. If the bloodwork showed strain, I would need the procedure immediately, without general anesthesia. If the kidney labs looked good, I could stay out of the hospital for the weekend and go in on Monday for the procedure with general anesthesia. The situation was much worse than I had thought.

      I was lucky and the swelling had not yet impaired my kidney function and I could stay with my mom in the apartment for the weekend and go in Monday for the imaging and tube placement. I spent the weekend enjoying the freedom of being out of the hospital, but I was nervous about them seeing nothing on the imaging and not knowing how to fix my kidney. I was also absolutely miserable with the hydronephrosis pain.

      Early on March 6th, I came to the hospital for my tube placement. I was given anesthesia so I didn’t feel anything until I woke up. Once I was awake, I was in a ton of pain. I didn’t expect it to be so painful, but it was. Before my mom came back to the recovery room, I asked the radiologist if they saw anything and he said that I had a complete blockage of my ureter and would likely need surgery. This scared me but made me feel better that they could fix me and I wouldn’t be stuck with tube forever. After a few hours, I was brought up to a room where I would stay for a few days to control my pain and get used to having a tube in my kidney. My surgeon came up to my room a little bit later and further explained what they had seen on the nephrostogram. He said that surgery was likely but they needed to look at my imaging again and maybe repeat it after the tube drained my kidney more. If the blockage was less than 5 millimeters long, they could try to treat it with a series of stents, but if it was longer, they would need to go ahead with surgery. He explained that the new connection they made from my ureter to my bladder may have not stayed open resulting in the blockage. He told me that they would look with the radiologists and let us know the next day. In the meantime, he ordered stronger pain medicine to keep me comfortable.

      I spent the next 24 hours pretty miserable with pain from the tube, which I didn’t know would happen, but maybe I should have expected it given that a cut was made to place the tube which was then pushed into my kidney. But just like I did with my auto transplant, I forced myself to get up and walking the day after the placement. While I was walking the halls, I saw the transplant fellow who I love. She stopped us and told us that the radiologists looked at my nephrostogram with the surgery team and surgery would be needed to correct my blockage, which was two centimeters long, or four times the length it could be to avoid surgery. I was sad to hear I would be going through another major operation, but I knew I could do it.

      I spent one more night getting my pain under control and learning how to flush the tube and empty the bag, and then I was able to go back to the apartment. Draining my kidney had alleviated some of my kidney pain but I still had a bad pain in my lower right abdomen. We assumed it was just the kidney which was still not back to normal.

      That weekend, my brother and dad flew up to visit. We spent most of the time watching movies together but also drove around to see the campus and threw some snowballs on the sidewalk in front of our apartment. But it was hard to enjoy the company when I was so exhausted and in pain all the time. They only stayed for a few days because it was spring break, but later that week I got another visit from one of my best friends. It wasn’t a surprise this time, but I was still so excited to see her! We watched movies, played games, and enjoyed March Madness, since we are both huge college basketball fans. She left three days before my surgery, and I spent those days getting ready and watching more basketball. My dad also flew back to Wisconsin to be there for my surgery.

     I arrived at the hospital at 5:30 am on March 20 for my second major operation of the year. I was extremely nervous, despite having gone through something similar less than two months before. I saw my surgeon and the fellow before my surgery, who explained they would go over my existing scar, but would extend it a few inches below it to get a good view. At 7:30 am I said goodbye to my parents and went back for surgery. I was so nervous that I required a lot of medicine to get me drowsy, so I remember seeing the operating table and all the surgeons and nurses in the OR, but finally, I drifted off to sleep.

      I woke up a few hours later in the recovery room. I was in horrible pain and begged for my parents. This time, they did let them come see me. I asked my mom and dad if it had gone well and the said it had, but that they had found very unusual issues and ended up doing a different operation than planned. Instead of creating a new connection to my bladder and removing the narrowed portion of my ureter, they had found my small intestine wrapped like a snake around my ureter, preventing any flow of urine out of that kidney, and also causing intermittent bowel obstructions. So not only did I have a blockage of my ureter and a severely swollen kidney, but I had bowel obstructions as well, explaining the vomiting and continued symptoms after the tube was placed. In the surgery, they cut my bowels off of my ureter, which caused both partial and complete tears that had to be stitched back together. They had never seen anything like this ever before, but they said that after removing the bowels and adhesions off of my ureter, that things had started to flow through again.

      I spent the first few days after surgery in severe pain, unable to sleep at all. But the nurses were amazing at advocating for me for stronger pain medicine, and eventually we found a combination of medicine that kept me comfortable and I was able to sleep and start moving around again. The first time sitting up and walking was awful again, but I expected it and was able to push through. I knew that moving around was the best way to start feeling better.

      The next 10 days were a blur of pain, walks, and eating small bites again. It was another extremely difficult recovery, but I could feel myself getting better in a way I hadn’t after my auto transplant. I also managed to avoid an ileus, despite having bowel surgery. Things were going so well that the surgeons decided to try to remove my nephrostomy tube since we had taken the bag off of it anyway. So I went to IR and was given some light sedation while they pulled the tube out. They also offered for me to pick music to listen to, and I picked Taylor Swift, of course, just as I have for every procedure. When I was fully awake, they explained that the tube wasn’t ready to come out because urine would have leaked into my abdomen since the scar tissue hadn’t fully formed. So instead they replaced it with a smaller tube to try to encourage scar tissue to form. However, the next time I went to the bathroom, the urine collector was filled with blood. This continued to worsen and my kidney pain began to come back, so my nurse called the doctor. He said that he would talk to IR to decide what to do. However, IR said just to keep and eye on it. So we did. But by the time the doctor came around the next day, there was a significant amount of blood in my urine. So this time we showed the surgeon. He immediately called IR and within an hour I was getting another tube exchange. This time they put the bigger tube back in and reconnected it to the bag to drain since my hydronephrosis had come back. The bleeding stopped and so did the pain. We disconnected the bag after 24 hours and I was doing better again. The doctor thinks the bigger tube was pressing against a blood vessel and when the pressure was removed, I began to bleed.

      The next day, I was able to start coming off the IV pain medicine, meaning I could soon go home, since the kidney and rest of recovery was going so well. I had worked so hard to go home, so I was excited. But the doctors wanted me there for at least one more day. The one thing I would truly miss about the hospital is the nurses and nursing assistants. I have really created a friendship with some of them and will miss their exceptional care and constant kindness and humor.

      On what I knew might be my last night in the hospital, I was watching basketball with my mom when the hospital speaker announced a tornado warning. Since tornados are my worst fear, I hustled to the hallway where I bumped into my night nurse who said everyone needed to get into the hallway and close their doors. So my mom carried two chairs and blankets into the hallway where we sat down and watched as everyone else walked or was pushed out into the hallway. I wanted to make friends, but I was much younger than everyone else and they were a little bit weird. I missed the friend I had made during my first hospital stay. I wished he and his mom could have been with us to laugh at the situation. But instead it was just my mom and me hanging out. She distracted me and the situation became a little funny. A lot of crazy and scary things have happened to me in that hospital, but they also changed my life for the better forever.