Medullary Sponge Kidney Disease

Hey, long time no see. I thought I would share the timeline that I am now taking to every new doctor’s appointment. Warning: It’s probably a bit TMI. But, I’m kind of proud of it.

I’m seeing a nephrologist today. I’m not getting my hopes up, at all. But here goes:

 

I have had reoccurring UTI & kidney infections from a young age. My mom said I was around 5 the first time I got one. When I was 33 weeks pregnant in 2003 my left kidney swelled, causing extreme pain and pre-term labor. I was given pain medication and put on bed rest and the problem seemed to resolve upon delivery.

December 2010- I woke up with back pain, definitely more on the left than right side but as I have had issues with back pain in the past I contributed it to just that. I went to work and throughout the course of the day the pain got more and more intense. I also felt like I needed to urinate constantly and at some point went to the bathroom and had a lot of blood in my urine. I went to see my family doctor who sent me across the street to the ER. Once I was seen & after the doctor confirmed I had blood in my urine, the doctor brought an ultrasound machine in the room and confirmed kidney stones. He did not say how big they were or how many of them were there, just gave me pain medication, told me to drink lots of water and to contact my doctor if I felt any worse. A few days later I passed a stone, which I assumed was the only one in there. I continued to have intermittent flank pain, but thought that I was just having back problems.

 March 2011- The intermittent flank pain has intensified and I am constantly nauseous. I also have bladder spasm on and off.  I pass out twice at work and can barely get through the workday, pick my kids up from school and then crawl into bed. My primary doctor refers me to a local urologist and sends me for a CT scan. The scan shows I have a very large stone, along with some smaller stones, in my left kidney and several small stones in my right kidney. The urologist schedules me for lithotripsy on my left kidney and starts me on a course of antibiotics as I have an infection. The lithotripsy is preformed, but the surgeon explains to my husband that it was not entirely successful and will probably need to be done again. They place a stent in my kidney and I am discharged. Two days after the procedure I am in uncontrollable pain, feverish and nauseated. I cannot get relief, so my urologist suggests going to the emergency room. While there they perform another CT scan and confirm that the large stone is now several large stones. I go back to the urologist twice and he leaves the stent in until I have another lithotripsy. The pain & nausea is unrelenting and the pain of the stent is now compounding it. I do not pass anything more than some sand.

April 2011- I am scheduled for a second lithotripsy procedure. I am told that the stone is broken up into passable pieces and the stent is replaced. I continue to pass nothing more than sand. When the stent is removed I pass several large stones all at once.

June 2011- Within a few weeks the pain, nausea and bladder spasms return, mild at first but rapidly becoming severe. I increased my water and tried to pass the stone on my own. After a few weeks I contacted my urologist and he sent me for a KUB which shows I have a stone stuck in my left ureter. I am advised to drink lots of water and go to the emergency room if the pain becomes unbearable. I wait some more and then decide to go to the ER when I begin to not be able to urinate much and the pain becomes unbearable. I am admitted to the hospital and my urologist performs an ureteroscopy the next day, as well as placing another stent. The recovery from this procedure is much more difficult than the lithotripsy’s. After around 3 weeks the stent is removed, even though I still have stones in my kidney. I am told to come back in 3-6 months, even though I have explained that I am still having burning pain in my urethra/bladder and sharp pain in my left kidney. I am told that my stone is a calcium oxalate stone.

July 2011- Present

 I have continued to have pain and nausea daily. I also continue to have infection and blood in my urine. I switched to a new urologist in April 2012, who suggested that I may have Medullary Sponge Kidney Disease but did nor order any additional tests or follow up to confirm. I have been told that the remaining stones in my kidney are very small, should pass easily and that they should not cause me pain- except that it does. And with the exception of the very first time, I have not been able to pass a stone on my own.

In the last few months the nausea and vomiting have grown steadily worse. Whereas before I was often nauseated, I am now having sudden and violent vomiting- often without much of a warning. It often coincides with a deepening of the flank pain and bladder spasms. I have tried to change my diet to eating small meals throughout the day, adding lemon to all of the water I drink (80+ oz per day) but it has not seemed to help. I was referred to Stanford Urology Clinic in May 2012, who confirmed the diagnosis of Medullary Sponge Kidney Disease but discounted any pain I am having, stating that it must be completely unrelated. I was told that there is nothing that can be done to manage the condition besides drinking more water and waiting until they are big enough for surgery.

At present I am experiencing the following:

A deep, burning pain along the left side of my back, which sometimes develops into sharp stabbing pains in the same spot. I have problems sleeping because I am never comfortable.

A constant feeling of the need to urinate. Sometimes, even though I have drunk a large amount of water, I can only produce a small stream.

A painful burning sensation when I urinate & frequent bladder spasms.

Accidentally urinating- especially when having bladder spasms. Mostly during the day, but a few times at night as well.

A feeling of achiness and heaviness in my pelvis. This often progresses to the point that walking, sitting or really any activity becomes unbearable.

Nearly constant nausea with vomiting.

Fatigue, a constant “flu-like” feeling. I have always been a very high energy person, now just getting through a normal day is difficult.

A worsening of symptoms right before my period. My cycle has become somewhat irregular (I was always every 28 days before last year.) The irregularity is not extreme, a week early/late at the most with occasional spotting in between, but I have had a definite worsening of cramps and migraine headaches and my period lasts 5-9 days with very heavy bleeding. Before it was 3-5 days with only a day or two of heavy bleeding. The migraines are not new, I have had them since I was a child. I did have a CT scan earlier this year to rule out any brain/sinus problems and everything was clear.)

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3 thoughts on “Medullary Sponge Kidney Disease

  1. little big says:

    Holy shit, Val. I am so sorry. 😦

    BEST OF LUCK at the doctor’s!

  2. Dian Heisey says:

    I am so sorry you are having so many problems! My prayers are with you. It really sounds aweful! Love you!

  3. pistolval says:

    thanks all. I have gotten more than a few “but you don’t look/act sick” comments so I wanted to put this out there. Also, in doing research I wasn’t able to find a comprehensive timeline like this to model mine off. I figured this might help someone else communicating with medical professionals.

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