October 2022

Going into October, I knew it would be a difficult month. I would be spending most of the month just waiting to leave for my appointment with the transplant clinic in Wisconsin. I wouldn’t be doing much to move forward in getting better, so I knew I would spend a lot of time wondering if waiting for these other transplant programs was worth it. I already had two doctors willing to operate within the month, but my family and I decided that the other programs would be worth waiting for, at least to meet with the surgeons and hear what they could do to help me.

However, I did have one test done in October. It is called a split kidney function test and it is done to find out how much work each kidney is doing. For me, we wanted to find out that my right kidney is doing at least 50% of the work so that I would have enough kidney function if my surgery resulted in the loss of my left kidney. For the test, I laid on my back on a table that was pushed into a machine from my chest down. I was then given a radioactive tracer through my PICC line that would go to my kidneys. This allowed for my kidneys to light up on a screen as we watched the tracer move through them. I couldn’t feel anything happening, but I could see my kidneys on a screen next to me. After half an hour, a radiologist looked at the images to decide if I needed to do another part of the test. The second part of the test is completed if the tracer has not moved out of the kidneys into the bladder. The radiologist told us that my left kidney was not emptied enough so I would need to complete the other part of the test. In this part, I was given a high-power diuretic, that would move the tracer out of my kidney and into my bladder. I stayed in the machine for another half hour and then I was done. The results showed that I had some retention in my left kidney and that my right kidney does 53% of the work and my left does 47%. This means they both work about the same but that my right kidney does slightly more. This is the ideal result for undergoing a renal auto transplant.

              The other thing I did in October was start ketamine infusions for my Nutcracker pain. They were recommended by the program in Wisconsin as a way to lower pain while waiting for surgery. I was very hesitant to try the infusions because I get nervous about new pain medications and had a bad experience with ketamine in the ER. I did feel a little better after talking to the doctor at the clinic, who explained that the infusion is given over a few hours, they provide medication to combat the side effects, and they check on you frequently throughout the infusion.

              I was still a little nervous going in for my first infusion. I filled out some paperwork, and then was taken back to a dark room with a recliner. I got comfortable and got covered up with my lucky UNC blanket. I was then hooked up to the bag of ketamine to my PICC line. The ketamine is injected into a small bag of saline so it is diluted to be given over a longer period of time. Once the infusion was started, I immediately started feeling weird. I couldn’t focus my eyes and the room felt like it was spinning. I also got very nauseous, but luckily they gave me medicine to help that side effect. I felt too strange to sleep, so I spent the whole infusion listening to music or talking to my mom. I also needed some anti-anxiety medication during the infusion to help me breathe when the ketamine made me panic. After the infusion ended, I spent another hour in the room recovering and getting back to feeling like myself. I went two times a week for three weeks, and then started going once a week. By the most recent infusion, I was able to get through it much easier and am more used to the weird feeling.

              One fun thing I did this month was for Halloween this year, I carved a pumpkin with an awareness ribbon for my conditions. My mom also carved two UNC pumpkins. It was such a fun afternoon, and I was very happy with the finished products.

              On the last day of October, my mom and I left for Madison, Wisconsin. Our flight was delayed four hours, which caused some panic that we wouldn’t make it to the appointment the next morning, but we eventually made it. We then checked into our hotel, which is in the middle of the UW campus. For dinner, we walked to a restaurant called Raising Canes, which is a place found on a lot of college campuses. I could only have a few bites and got sick afterwards, but it was fun to taste something different. We then went to bed knowing we would have to wake up early for my appointment.