November 2022

      I woke up early on November 1^st to get to the hospital for my venogram. A venogram is a test where a needle is inserted into a vein in your neck or groin, and a catheter is then fed down into the veins that need to be viewed. Interventional radiologists (IR) inject dye to get images of the veins and how the blood flows, and they measure the pressure inside of the veins as well. Once I got settled in my pre-op room, an interventional radiologist came in to discuss the procedure with me. He explained that I would be asleep for the whole thing and wouldn’t feel anything during the procedure. He also told me that he had looked at my imaging and didn’t think he would see anything unusual, such a Nutcracker Syndrome (NCS) or May Thurner Syndrome (MTS). This was both confusing and discouraging as I had already been diagnosed with both. I was upset at the idea that once again I would be told nothing was wrong while I suffered but decided we would know more after the venogram.

      I woke up from the venogram with a lot of left flank pain which is not uncommon for people with compressions because the dye that is injected can irritate the vein. My nurse messaged the IR to order some pain medicine, but instead the IR decided to come back and explain the results of the procedure to me. He said they found significant compression of my iliac vein (MTS), and that, because of this, my body had formed lots of collaterals, or smaller veins that had begun to carry the blood around the compression. He also said that they saw some compression of my left renal vein (NCS), but that my pressures were pretty normal and he doubted NCS was the source of my pain. This was so hard to hear because my renal hilar block, which numbed my left renal vein, had been so successful in getting rid of my pain for several hours. But once again, I decided that the IR wouldn’t be the one deciding about my surgery and that I just needed to hope that the surgeon would have enough evidence to accept my case. He also finally ordered a dose of pain medicine to help with my horrible kidney pain.

      My mom and I spent the rest of the day and the following day distracting ourselves from the venogram before my appointment with the transplant surgeon. We went to see Lake Mendota, which is right on the University of Wisconsin campus. It was so pretty, and we enjoyed a short walk alongside it. We also went to the bookstore and bought some Wisconsin gear for my family. The next day, we went to a little zoo a few minutes away from our hotel. We saw a lot of cool animals, but the capybara and meerkats were my favorite. After the zoo, we went to an ice cream store to try some Wisconsin ice cream. I could only have a few bites, but it was fun to taste it. Next, we went to the dairy cattle center on the campus and watched the cows get milked. They were all waiting in line to be attached to a big machine that pumped and collected the milk. It smelled pretty gross in there, but it was still my favorite activity of the trip. One cow really seemed to like me, and I was tempted to pet it (my mom discouraged this idea). We also enjoyed sitting on the rooftop patio of our hotel and seeing the view of the lake and fall trees and doing face masks together while we watched TV. I had a good time with my mom that day but, that night, I began to worry about my upcoming appointment. I was unsure what the surgeon would say about my case and the results of my venogram.

      The next morning, we drove back to the hospital and went to the transplant clinic. It is brand new and really nice. They have a whole wall with a list of living donors which is super cool to see. First, I met with the auto transplant nurse coordinator who explained the different people we would meet. Next, we met with the social worker who asked me lots of questions about my family and me. She was making sure I would be a good candidate and that my family would be able to be with me for a month in Wisconsin if I was selected for surgery. Finally, the surgeon came in. He introduced himself and started asking me about my symptoms and the tests I had undergone. He also showed us the pictures from the venogram. It was interesting to see all of my collaterals caused by my MTS. He also explained that my venogram showed some abnormalities but not exactly what they would expect for a severe NCS patient. However, he said that my successful renal hilar block and pain after my venogram did line up with NCS. He said he needed to talk to his IR about how specific and targeted a renal hilar block is to see if it truly indicated NCS and not any other conditions. He also said he wanted to talk to his urologist about doing another type of nerve block called a Marcaine cystoscopy, where numbing medicine is inserted through the ureter to numb the kidney. He said that we would likely need to come back and do this test to see if I was a surgical candidate. So, we left Wisconsin with a “maybe.” It was better than a “no,” but I still felt a little hopeless.

      Two weeks passed and we heard nothing from Wisconsin. I felt like I was losing time and just needed to give up on Wisconsin and get surgery somewhere else. But on the night of the 15th, my mom got a call. She answered her phone and immediately went upstairs, so I knew it was important. I stood outside of the room, waiting for her to hang up. When she finally put down the phone, she burst into tears and told me that they had accepted my case and I would be getting a renal auto transplant in January. I also burst into tears and called my dad to tell him the news. We were all ecstatic and finally felt overwhelming hope. While I would still have to wait a few weeks and it would be very major surgery, I couldn’t have been happier.

      In a renal auto transplant, an incision is made down the whole abdomen and the left kidney is entirely removed from the body. It is then cleaned up and prepared to be put back into the abdomen, but this time in the right pelvis. This moves the kidney and renal vein out from the compression, thus relieving NCS symptoms. After the surgery, there is a 10-14 day stay in the hospital and then an additional 2 weeks in the area for post-op appointments. It is very painful and a huge commitment, but so worth it for someone like me.

      This year for Thanksgiving, my parents let me plan a little bit to make it more fun for someone who can’t eat and enjoy the holiday as normal, so I decided to turn it into a pajama party. I got matching pajama pants for every member of my family and everyone wore them. We also sat around the house and porch and ate causally instead of sitting down at a formal table. We all watched Thanksgiving basketball and football and I was able to enjoy the day much more than I thought I would.

      I was also able to spend some time with my friends while they were home from college, which was really fun. I had missed seeing them so much and hadn’t seen some of them since August.

      Now we just wait on an official surgery date and look forward to Christmas with my family and friends in the meantime.