Life for me lately has been incredibly difficult. A few weeks ago, I experienced a significant increase of the pain I usually experience caused by a disease called Nutcracker Syndrome. I have been struggling with this condition for the last 3 years. Because of this increase in pain, I had to withdraw from my occupational therapy fieldwork, move back into my parents’ house, and dedicate all my time to doctor appointments and trying to figure out how to fix my chronic pain for good. After consulting with many doctors, we have determined that the best course of action is to travel to the University of Wisconsin Medical Center in Madison, Wisconsin to receive a left renal auto-transplant. During this 4-8 hour operation, they will need to remove my kidney, put it on ice while they attempt to remove both stents from my renal vein, and then put my kidney back in a slightly lower spot, shortening the ureters. Nutcracker Syndrome is very rare and this has only been done by a handful of surgeons. My case is particularly complex because of the past procedures I have had, which I will explain below. I need this procedure to fix my constant pain, but also to save my left kidney, which I may lose depending on the amount of damage they see when the surgery is performed.
The longer I wait for the surgery, the greater the risk my kidney will not be viable.
Currently, I struggle to stay awake because of all the medications I am on, and I am unable to get out of bed some days because of my pain and fatigue. Some of my medications are not covered by insurance and are costing hundreds of dollars a month just to keep my pain somewhat managed. Traveling to Madison will also be expensive, and we will need to find somewhere to stay once I am discharged from the hospital, but before I am fit to travel. It has been a very expensive and difficult few years that have really left our family’s resources limited.
In the summer of 2014, life was going well. I had a great summer occupational therapy internship in the city that I was loving, and I felt that I had found the career path I was passionate about. Then, about halfway through the summer, I started experiencing abdominal pain and discomfort, along with severe nausea. The pain would come and go, and was manageable for the rest of the summer, but by the time I got back to Ithaca to start my junior year of college, I knew something was very wrong.
The pain was now constant, and was severe enough to concern me and send me to doctors looking for answers. Initial evaluations showed nothing abnormal, but because of the severity of my symptoms, I was referred to a gastroenterologist for further testing. I was poked and prodded while they did every test they could think of, including an endoscopy and colonoscopy, to check for any inflammatory bowel disease, such as Crohn's. Nothing was found, and the doctor assumed it must be irritable bowel syndrome. I will never forget the feeling of utter hopelessness I experienced when the doctor gave me these results and told me my severe constant pain would be fine as long as I stopped eating tomatoes and garlic and wore loose clothing. I continued to look for answers with other GI doctors in NYC. When nothing was found there either, my doctor mentioned she didn't think they'd find anything, but I might try a CT scan just to make sure nothing more serious was going on.
By this time, it was January 2015, I had been in constant pain for 5 months, and it was time for me to go back to Ithaca to start classes. Because of my insurance, almost no doctors were covered anywhere near Ithaca so I was basically on my own to deal with the pain. The first 2 days I was supposed to be going to classes, I spent throwing up in my house. I had already lost 15 pounds because eating had become so painful and I was throwing up at least every other week. The third day of classes, with many drugs in my system to keep me from throwing up, I managed to attend class, but retained nothing as all I could focus on was pain.
That night, my mom told me that although they were still working on getting insurance to cover a CT scan, things were so bad I should just go to the ER (not covered by insurance) and have them do a CT and hope they see something. At the very least, I would be able to get pain medication to make this night easier to get through, and we would just have to deal with the hospital bill later. I cannot thank my Mom enough for allowing me to do this, as I have no way of knowing how much longer it would have taken to get diagnosed if I had not been able to go to the hospital that night. Luckily, the intervention radiologist (radiologists that do some procedures to help vascular compressions) happened to be the radiologist on call. A CT scan was done, and 15 minutes later, a nurse rushed in with a phone and said the radiologist at home on call wanted to speak to me himself.
At this moment, I was terrified and expected him to tell me I was dying because the nurse seemed very concerned, and it certainly felt like I was in enough pain to be dying. When I was finally able to speak to the radiologist, he told me I had a rare condition called Nutcracker Syndrome, which means that the vein coming off my left kidney was being pinched by other blood vessels, so almost no blood could get out of my left kidney. The kidneys filter the blood, so if no blood could get out of my left kidney, this would cause all sorts of blood flow issues and pain, which explained all my symptoms. Receiving this diagnosis was terrifying, but he assured me it could be corrected. Although I was nervous, I felt like I was finally figuring this out and I had hope I would feel better soon.
Finally given a real diagnosis, I decided the best thing to do would be to take a semester off college and get this fixed. This would mean delaying my graduation by a year because of how my program's scheduling works, however, I was in too much pain to function in a school environment and I needed to get some relief. My family and I found doctors in Long Island who were confident they could help, and after doing some diagnostic testing, it was recommended I get a left renal vein transposition surgery. This was supposed to get the renal vein out of the pinch and allow blood to flow through it normally again.
This was a huge procedure and recovery was slow and difficult. I was too afraid to take medication after it made me throw up 2 days after surgery (with an incision that went down my whole abdomen, this hurt A LOT) so my pain went unmanaged, and all I could really do was try to get moving again and ignore it.
Eventually, though, I got better, and after almost a year in horrible pain, I felt was finally healed. This great feeling lasted for about 3 weeks, until my pain came flooding back. After some tests were done, it appeared that the renal vein had been so damaged from the Nutcracker pinch, it was no longer staying open, and blood could still not flow through. This led to a stent being placed in my renal vein and a coil being put in my gonadal vein. I was told that this would be it, and everything should work fine now. When this was not the case, and my pain got even worse, I was told by my doctors that it could no longer be the renal vein, they had done their job, and there was nothing else they could do for me. I was heartbroken. I tried chasing other leads of what could possibly be causing all this pain, but found no real answers or relief. Finally, in the winter of 2017, I got an explanation.
The worst vomiting episode of my life had befallen me. I was horribly ill, no medication was helping, and I was in so much pain over my entire body, a hand gently placed on my back sent surges of pain. It soon became clear I needed to go to the hospital. Tests were done, no one could come up with any reason for my vomiting, but the doctors did mention that it looked like the stent in my renal vein could be broken. This discovery led me back to the doctor who placed the stent. He confirmed it had broken and put another, stronger stent inside of it to open my renal vein once again. Again, I experienced weeks of no pain and thought I was cured, and again my pain came back.
The new stent was placed in March of 2017. Since then, while still in pain, I graduated with my Bachelor's degree and started the Master's portion of my occupational therapy program. This program begins with a 12-week fieldwork experience working with an occupational therapist where I would get to conduct my own sessions and really get used to working with clients. I was excited, but nervous about being able to keep up with the workload, given my condition. I have gotten to the point where I can hide my pain from people and function well, but sometimes, it is just too much. For the first few weeks, I did alright. Chronic fatigue caused by my pain left me exhausted constantly and I fell asleep immediately after work, but I was getting through it. My boss had no idea I was sick and I could chase after kids, pick them up, and do everything I needed to do. I hoped I'd be able to make it through the next year of schooling and solve this for good, once I had graduated with my Master's.
A few weeks ago however, my pain and symptoms got so severe, I felt I had no other choice but to withdraw from my occupational therapy fieldwork and take more time off from my program. Now, I am barely able to stand and I have moved back home for the time being, where I spend most of my days going to doctors and lying in bed. I cannot express how hopeful I am to find a permanent solution to this pain. The surgeon we are trying to get approved seems to have a lot of success treating people with my condition through this surgery, and we are hopeful it will work for me as well.
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