I've realized that I've never shared my experience of having a floating kidney, and I think it's time I did. It's surprising how many doctors aren't familiar with this condition, and I've even come across misinformation online, with some claiming it's not even real. I've seen posts from people seeking information or a diagnosis, and unfortunately, they're often receiving terrible advice. There was even one person who had a bad surgical experience, though their description of the procedure sounded nothing like the common approach. So, I'm hoping that by sharing my own floating kidney story, I can help those who are searching for answers and guidance.
In 2018, my life took an unexpected turn when I became severely ill, embarking on a bewildering journey that would last five long years. It involved countless consultations with 22 medical professionals and even a trip to the renowned Mayo Clinic. Ironically, it wasn't a Mayo doctor who finally cracked the case; they, too, were stumped. During this time, I underwent a battery of tests - labs, x-rays, CT scans, biopsies - and tried numerous medications and supplements. There were so many misdiagnoses along the way. Early in my illness, I experienced severe digestive issues, leading to a rapid weight loss of 25 pounds in just two months. It was during this period that I discovered a mobile, plum-sized mass in my right abdomen. The pain in my entire right side was so intense that I spent months curled up with a heating pad for relief. Being upright was excruciating, but lying down offered a good amount of comfort, so I stayed in that position for almost four months, only getting up for doctor visits.
I found the lump under a surgical scar while lying on my side in the middle of the night, so I rushed to the ER. The ER doctor diagnosed it as an incisional hernia. However, when I later consulted with a general surgeon, he questioned the ER doctor's assessment after a physical examination. He ordered a CT scan (my second since becoming ill), but the results revealed nothing unusual. The surgeon, puzzled by the findings, suggested an MRI, but I was convinced it was a hernia and that lying flat for a scan might be the reason for the unclear results.
After dedicating hours to researching the best hernia specialists, I finally identified a surgeon in California who I felt was the perfect fit for my situation. I carefully crafted an email to her, explaining my concerns and symptoms. To my relief, she responded and validated my suspicion that hernias can be easily missed in standard, flat-lying ultrasounds or scans. She recommended getting an upright ultrasound to get a better view. It was just around this time that I found myself at the Mayo Clinic, seeking help for my chronic health condition. Naturally, I saw this as an opportunity and pleaded with the doctors there to perform an abdominal ultrasound. They acknowledged the palpable mass I was feeling, but after examining it decided it didn't feel like a hernia. Still, they agreed to perform the ultrasound.
Lying on my back, the sonographer started the abdominal ultrasound, and said everything looked normal. No hernia. Then, he inquired about the positions where I felt the mass the most. I told him it was when I was on my side, so he guided me to roll over. He ran the transducer across my abdomen again, but this time he remained silent, his face unreadable. Next, he asked me to stand. As I stood, he moved the transducer across my abdomen once more, stopping abruptly. The change in his demeanor was palpable; he seemed genuinely shocked. He pointed to the screen, his voice laced with surprise, and said, "Do you see this? This is your kidney, and it's pressed right up against your abdomen." He left the room returning shortly after to inform me that I needed to follow up with my doctor. And just like that I was sent back to the gastroenterology department, the weight of the ultrasound findings heavy in my mind, waiting to understand what that meant.
I was convinced I had pinpointed the cause of my chronic health issues. I was certain that the unusual position of my kidney, pressing up against my abdomen, was the key to unlocking my well-being. If I could just fix that, I believed I could finally be healthy again, but sitting in that gastroenterologist's office, my hopes began to crumble. She dismissed the idea that my kidney was the root of my problems, or even that it was causing any pain at all. To really drive the point home, she called the urology department to ask a urologist, putting her on the speakerphone to confirm that a floating kidney wasn't unusual. It was a normal occurrence, she said, and had nothing to do with my pain, palpitations, digestion, or blood in my urine. After two long days of tests at Mayo, I left feeling dejected, yet armed with knowledge that I didn't have before and could serve as away to get well again.
After returning home from the Mayo Clinic I got busy researching everything I could find on floating kidney. I discovered it's a very real but rare condition, medically termed nephroptosis, affecting women more than men. It's considered controversial in the medical community regarding both diagnosis and treatment. A kidney has to drop more than 5 cm when standing to be considered nephroptosis. The treatment involves a nephropexy, a surgery where the kidney is secured to psoas muscle. Symptoms can include flank pain upon standing and blood in the urine. It's also associated with a whole host of other issues like weight loss, heart palpitations, kidney pain, hypertension, nausea, chills and trouble urinating. It was a lot of information to take in but after nearly five months of being bed-bound I finally felt I was on the right track to getting better.
To read why the diagnosis and treatment of nephroptosis became controversial, read HERE and HERE.
After hitting a wall with Mayo, I took it upon myself to find a urologist in Minnesota who could possibly repair my floating kidney. I gathered all of my medical records, highlighting the persistent blood in my urine, the chronic pain, the weight loss, and a collection of other symptoms that seemed to weave into the puzzle of my health. With much hope, I sent these records to several respected urologists in the state, only to face rejection after rejection. It was disheartening to say the least. Finally, one doctor agreed to do a consultation, but just as quickly, that hope was snatched away. The day before my appointment, his nurse called to tell me my appointment was cancelled and that I should return to Mayo. Desperate, I explained my situation and the dismissive attitude at Mayo, but she remained unmoved. I broke down in tears. The pain was relentless, eating had become a nightmare, and a host of other symptoms had stolen my quality of life. I felt utterly defeated, yet my daughters encouraged me to keep searching for answers.
Feeling lost and alone I finally stumbled upon a blog on the internet that changed everything. It was written by a woman in Spain who had undergone surgery to correct her floating kidney, and she generously shared a link to a Facebook forum where people with similar experiences from around the world gathered. This online community was a revelation! It was filled with women, each with a unique collection of symptoms, but all sharing a common thread of a palpable mass in their side, the accompanying pain, and difficulty finding a doctor to diagnose and treat the condition. Interestingly, the majority of floating kidneys were on the right side, just like mine. While many were searching for a diagnosis, a few had already undergone surgery, some of which had to repeat the surgery since the first one failed. I was eager for guidance so I asked the group for advice on finding a surgeon. Unfortunately I couldn't just ask them to recommend one considering most of them were outside the United States, but I got lucky when a particularly wise young woman suggested I delve into medical journals to identify someone in my country with experience in nephroptosis. And so, that's exactly what I did.
Note: in between the time I first went to the ER and the time I eventually found a doctor to diagnose the floating kidney I had actually seen a variety of medical specialists for my chronic health issues and I'd asked about the palpable mass and was dismissed entirely or told it was bowel gas and stool.
While sifting through medical journals, I stumbled upon a case report authored by Dr. Craig Rogers and Dr. Akshay Sood. You can read the case report HERE. After reading the report it became clear that the cause of my persistent pain was, in fact, a floating kidney, requiring surgical intervention. So I sent an email to Dr. Sood.
At that moment I naively believed that the surgery would be the key to resolving all my health challenges. Little did I know that while the surgery would alleviate the excruciating pain, it wouldn't entirely eradicate the digestive problems or the myriad of other peculiar symptoms that plagued me.
I had a surge of hope when Dr. Sood responded to my email asking for his help. He was genuinely sympathetic to my medical journey. He forwarded my email to Dr. Rogers and I received an almost immediate reply. Dr. Rogers suspected nephroptosis just based on what I told him and he wanted me to come in for an official diagnosis, which meant a trip to Henry Ford Hospital in Michigan. I was overwhelmed with gratitude and within two weeks, my husband and I were on a plane. We flew out the first week of March in 2019, ready to finally get some answers.
My experience with the staff at Henry Ford was simply incredible. I truly couldn't have asked for a better team to guide me through the process. Dr. Rogers, in particular, was fantastic. He performed a physical exam, ordered the necessary lab work, and then arranged for me to undergo an intravenous pyelogram (IVP). As I learned, this imaging test uses contrast dye to illuminate the kidneys, ureters, and bladder on an X-ray. The procedure involved taking an initial image while I was lying on my back, revealing the kidney in its natural position. Then, another X-ray was taken while I was standing, the purpose being to measure the extent of the kidney's descent. As it turned out, my kidney was dropping a significant 8 centimeters and had settled quite low, finding a new home in the right side of my pelvis. Dr. Rogers let me know that I was approved for surgery.
May 4, 2019 - Dr. Roger's going over my X-ray with me.
Floating kidney's are so rare that Dr. Rogers had a number of his medical staff come into the room during the IVP for the purpose of learning and seeing something unusual. His nurse said to me afterwards "you're special but probably not in the way you'd like to be." She was right. I wasn't looking forward to surgery. I was actually terrified.
The road to surgery was a long one, complicated by other health issues that needed addressing first. But finally, in late August of 2019, the day arrived. My husband, daughter, and I packed up the car and made the drive from Minnesota to Henry Ford Hospital in Michigan, where Dr. Rogers was going to perform a robotic assisted nephropexy.
The day of surgery I was terrified but the pre-op team were incredible and did their best to reassure me. I was wheeled into the operating room and all I remember is Dr. Rogers pointing to the Da Vinci Robot. I woke up from surgery feeling like I'd been run over by a bus, but honestly, that was the worst of it. The surgery went well, and after just one night in the hospital, I was discharged to a nearby hotel to recover for a few days before the long drive back home. Dr. Rogers emphasized the importance of walking every hour, which was definitely a challenge, but I was determined to follow his instructions. I chose not to fly to and from Michigan because the thought of being jostled by other passengers, sitting for extended periods of time, or dealing with the potential gas buildup, which would often happen to me on planes, just didn't appeal to me post-surgery. So, we chose the car, it allowed me to stop frequently, stretch my legs, and even lie down when I needed to, making the journey more manageable.
Back home after surgery the recovery from the surgical pain itself was a slow process, but the relief from the nephroptosis pain was almost immediate, like a switch had been flipped. I even hosted a small gathering with friends just four weeks after the operation, and by the two-month mark, my scars were already fading to the point of being barely noticeable. Now, I pray every single day that the surgery holds its ground because, sadly, it doesn't always, and the thought of enduring that experience again is something I truly dread.
Despite how positively things ultimately turned out, the entire journey - from discovering the mass and navigating the frustrating path to diagnosis, to finally finding a doctor who took my pain seriously and proceeding with the surgery - was undeniably traumatic. Dr. Rogers even shared his surprise at how quickly I recognized the issue with my kidney and persistently fought for a diagnosis, explaining that it often takes many years for others to be properly diagnosed with this condition.
The difficulty many people face in obtaining a floating kidney diagnosis often stems from a lack of awareness and understanding within the medical field, thanks to ignorant doctors like this - READ HERE. This issue is potentially compounded by the fact that the condition disproportionately affects women, whose medical concerns are, unfortunately, often dismissed or attributed to anxiety or hormone fluctuations. Several doctors had palpated the mass in my abdomen, yet downplayed its significance despite the debilitating pain that severely limited my mobility. The fact that it wasn't immediately visible on a CT scan or indicated by lab results led to its dismissal. This highlights a concerning trend where tangible physical ailments are disregarded if they don't align with standard diagnostic protocols, a potentially dangerous oversight that could have dire consequences if the underlying issue were something more critical, say, like a cancerous growth. Dr. Rogers even pointed out to me that the IVP is rarely used today because the CT has become the X-ray study of choice for the urinary tract, and he made a point to say what a mistake it has been for hospitals to dispose of the IVP machines because CTs don't allow for standing X-rays. Fortunately he had an IVP in storage at the hospital.
The above screenshot was taken from Twitter shortly after my surgery
I'm grateful there are specialists like Dr. Craig Rogers who are knowledgeable about the condition and perform nephropexy surgeries. Because Dr. Rogers is a teaching surgeon, he is helping spread awareness among medical residents and encourage them to correctly diagnose and treat a floating kidney.
Sadly for me, it turned out my digestive issues were caused by Mast Cell Activation Syndrome (MCAS), so unless researchers someday discover that floating kidneys are caused by MCAS, I believe what caused my kidney to droop was the sudden rapid weight loss. Thankfully I was diagnosed with MCAS in 2023 so hopefully, with that being managed well right now, I don't ever drop down to 106 lbs again or have to deal with anymore floppy organs. **fingers crossed, prayers sent into the universe.
Following is some information that may be helpful to someone suspecting they have a floating kidney or facing a nephropexy.
Floating Kidney Causes & Treatments (the info on CT and MRI standing are not accurate at this site). I've not heard of anyone willing to do those standing because the machines are not set up for that. There are cases now that they are using a type of standing CT to diagnose issues but it has been limited to looking at ankle, feet, and knee problems. These things may change over time though.
I see a critical gap in the treatment of floating kidney. Currently a limited number of surgeons possess the specialized knowledge required to effectively repair this condition. Even among those willing to perform the nephropexy, adequate training in the procedure is often lacking. This unfortunately leads to some patients requiring a revision surgery due to the initial procedure not holding. Adding to the complexity is the absence of a standardized surgical technique and long-term follow up of patients to determine the extended outcome. This leaves individual surgeons to determine the best approach. Even surgeons skilled in performing a nephropexy can't say with 100% certainty that it will hold.
What I learned from the floating kidney forum on Facebook
In Europe, surgeons oftentimes use the rib as an anchor for the kidney. Mesh is used in both Europe and the United States. I didn't have mesh or anchor to the rib, my surgeon used dissolvable sutures and clips and relied on scar tissue to hold the kidney in place. I don't believe surgeons ever use an open procedure anymore, they prefer laparoscopic or the Da Vinci Robotic system. I used the robot.
I went into the hospital for surgery at 7 am and was discharged the next day around 7 pm. Some patients have been discharged the same day or discharged up to 4 days later. I had a urinary catheter that wasn't removed until shortly before I was discharged. The nurse measured urine output to make sure there were no complications with my bladder before I could leave. I can't remember how long I took the pain medication and muscle relaxant, but it wasn't long, maybe a week. Some patients have been told to stay in bed for a while post op, in Spain a patient was instructed to stay flat on her back for weeks while recovering, she even had to be transported home by ambulance from the hospital. I was told to take short walks down the hall every hour, but between walks I stayed on my back in bed for 10 days. Some patients are back to work in a few weeks, while others take much longer to recover. I didn't feel like I was 100% healed for 3 months, but I also had some serious health issues not related to the surgery so that played a significant role in how I felt. My surgical scars disappeared rapidly. I owe that to the Da Vinci Robot.
Thankfully I had no complications. Driving home from Michigan was the most comfortable choice for me. Dr. Rogers was a phone call away and responded quickly. I only had to reach out a couple times with questions about recovery, nothing major.
I did have phantom kidney and flank pain for a couple years after surgery. It was bizarre. It would come and go, not debilitating. I had an ultrasound to make sure the kidney was still attached, and it was. I believe the pain was from regrowth of the nerves. I developed scar tissue that became uncomfortable 3 years post op, but physical therapy, acupuncture and cupping helped.
