Medullary Sponge Kidney: A Patient’s Perspective

If you want to learn about MSK or kidney stones in general, you’re in the right spot. Personally, in my 8 years of dealing with this disease I’ve never found such an informative and supportive website produced by physicians. As a contributor to the website, I will be writing occasional Patient’s Perspective Posts. By doing this, I hope to make you feel less crazy and alone because I know it’s a scary diagnosis and disease.

My posts will aim to give you ideas on how to manage your MSK physically and emotionally, from a patient’s perspective. I’m by no means an MD so please consult your physician before trying any of my ideas. I’ve learned a lot about the different diets, pain management methods, things to drink, what to avoid, and simple ways to make yourself feel better and I can’t wait to share them with you. I also want to discuss the dire need for more research on this disease, as a lot of information currently out there is old and/or inaccurate.

But first, I’d like to tell you a little about myself.

I’m Kayla, a 24 year old girl from Minnesota who was diagnosed with Medullary Sponge Kidney (MSK) when I was 16 years old. Apart from living with MSK, I try to lead a somewhat normal life. I graduated from the University of Minnesota with my Psychology BA last year. I’ve worked in medical/public health research for many years, and am currently working full-time on an obesity-prevention/healthy behavior promotion study called HOME Plus at the University of Minnesota as the Project Assistant and Evaluation Coordinator. When I’m not spending time with my couch and heating pad, I enjoy going to the beach with friends, shopping, and trying new places to eat.

As I mentioned previously, I was diagnosed with MSK at 16 years old after I was rushed to the ER in extreme pain one summer. My mom carried me in because I couldn’t walk, and on a pain scale of 1-10 my pain was an 11. This was my first experience with a stone, and because of that I was admitted to the hospital for 2 days for fluids and pain management. We thought it would be a one time ordeal, but we were wrong.

My next experience was exactly one year later during the summer. I woke up with the worst stomach ache that only got worse as the night went on. I couldn’t walk again from the pain, I was nauseous, and had a high fever. We went to the ER again and I was admitted for 4 days with a nasty kidney infection.

I was referred to a local nephrologist who put me on a slew of medications and told me to “drink, drink, drink!” None of it helped. During one of my many CT Scans, my nephrologist noted my kidneys appeared to be spongey and was diagnosed with MSK. She said it was a “benign” disease that would not give me any troubles.

Since then, my MSK has only gotten worse. Now my stones, pain, and infections don’t only happen during the summer or twice per year; they happen every month. In 2009 I was blessed to see a local urologist who not only believed me, he was willing to help me. Dr. Manoj Monga at the University of Minnesota was the first doctor to acknowledge my pain and give me options. I was scheduled for two surgeries (one on each kidney two weeks apart) in summer of 2009, which went amazingly well and we removed 9 stones total! They put stents in following the surgeries and let me tell you there is NOTHING more excruciating than a stent! Peeing is the most painful and awful experience ever with a stent! Even though recovery was difficult, I actually was stone and pain free for a year and a half­. It was some of the best time of my life since the diagnosis. I followed a low-sodium, high calcium, lots of water regimen (probably not as closely as I should have, but hey – I felt good!)

Sadly, as with most MSK patients, my stones formed again and the pain and infections came back with vengeance. Dr. Monga had taken a position at Cleveland Clinic and I was left with a urologist who didn’t know what the heck to do with me. We decided to do the same surgery minus the papillotomy in the summer of 2011. It was the biggest waste of time and I regret doing it every day. He only removed 1 stone because the rest were too imbedded in my kidney. Since that time, I’ve been horrible. I have extreme pain every day and I have a UTI every month even though I am on a daily antibiotic. At this point, I’m simply existing and managing my symptoms the best that I can.

I’m basically an 80 year-old woman in a 24 year-old’s body. I come home from work and sit on the couch with my heating pad and pain pills. Without narcotic pain medication, I couldn’t make it through the day and I hate that. In my next post I’ll discuss how annoying it is to not only be taken seriously and not as a drug-addict and on how challenging it is to actually get help!

I hope you found some use in my story, and know that whatever your story is you are NOT ALONE. I mentioned I created a Facebook Group and I encourage you to check it out and join: http://www.facebook.com/groups/Spongelife/

I can’t wait to hear from you and continue writing on KidneyStoners.org. If you have any ideas on what to write about, feel free to comment.

I also made a really ridiculous (thanks, pain medicine!) YouTube video that people seem to really enjoy about my daily battles with this disease, from kidney stones to kidney infections to unexplained daily pain, and my plea for more research.