Quiet

I've been pretty quiet the past several days, for good reason. I had surgery 3 days ago. As someone with a chronic, sometimes debilitating, kidney disorder, surgery is sometimes a necessity.

Last April I had a renal neurolysis which basically clipped the nerves to and from my right kidney. This was done so that when I got stones on that side, I would not have the intense pain typically associated with kidney stones. If you've ever had kidney stones or know someone who has, you probably know that this pain can be among the worst pain someone ever has in their whole life....and this happens to me often. Roughly every two or three months, I would end up in the ER with inconceivable pain. Often this would take multiple doses of dilaudid along with other medications to reduce the pain to a level manageable with oral pain medications.

My first stone occured 11 years ago while I was pregnant with my son and I was sure I was dying. I walked into the ER and immediately I was taken back (one perk of stones during pregnancy) and the nurse knew right away that I had stones. Over the years, my stones have become much worse with pain control becoming more and more challenging. After many years of dealing with this, I was diagnosed with Medullary Sponge Kidney. According to The National Kidney Foundation "Medullary sponge kidney (MSK) is a congenital disorder, meaning it is present at birth. MSK occurs when small cysts (sacs) form either on tiny tubes within the kidney (known as tubules) or the collecting ducts (a channel where urine is collected for removal). These cysts can reduce the outward flow of urine from the kidneys. One or both kidneys can be affected.

MSK is considered a rare disorder. The exact cause is not known and the vast majority of cases do not show a family history. Women are affected by MSK more frequently than men.

MSK is usually a benign disorder without any symptoms, but it can lead to other problems, such as urinary tract infections and kidney stones, as a result of the urine flow being blocked. In many cases, MSK does not cause symptoms or problems, but when it does it usually happens during adulthood. If problems do occur, it can cause pain in the side and back (known as flank pain), abdomen or groin. Other symptoms can include painful or burning urination, cloudy urine, blood in the urine (hematuria), fever, chills and nausea. These symptoms depend on the cause and severity of urinary blockage. Kidney failure occurs in about 10% of people with MSK."
Long story made short, MSK is a birth defect which causes the kidneys to not drain properly.

To complicate matters, I do not simply have one type of kidney stones, I have two. The most common form of kidney stones, calcium oxalate, make up the majority of my stones. These stones are formed when a lack of dietary calcium is available to bind with oxalates and leave the body quickly. Instead, the oxalates sit in the kidney and build up while the body waits for calcium to be available to bind with the oxalates to be able to be flushed from the body. These stones make up the small stones that I pass on a regular basis.

I also create what is known as cystine or staghorn stones. These stones are genetic in nature and for me, these are what make up the majority of my large stones. The largest stone I've had was roughly the size of a tennis ball and was noted in my kidney for four years before it was removed (there is a story behind that, but it's another post for another day). Cystine stones are often called staghorn stones because they typically have appendages that resemble antlers.

On Wednesday, I began to have significant pain near my hip and I knew right away I was dealing with stones. After a quick call to my urologist and some arranging at work, I headed off for an x ray. The next day I met with my doctor who told me that I had two stones low in my right ureter that had been in the same place since the last imaging I had in December. These stones were not moving on their own and causing mild hydronephrosis or fluid back up causing swelling in my kidney. Post renal neurolysis, obstructing stones and hydronephrosis is a bad combination as it can cause kidney death, necessitating removal of the kidney. In other words, these stones had to come out or my kidney could die. I was scheduled for a lithotripsy the next afternoon.

After rearranging my schedule at work, making sure I got a yummy dinner (with leftovers for an early morning snack), arranging child care, and packing a bag, I was ready for my trip to the hospital. I met some lovely nurses (one of whom remembered my weird directions for placing an IV), chatted with the anesthesiologist who chided me for eating right up to the cut off (they could have gotten me in early, but I had eaten steak and pepperoni), and joked with my urologist about how I held the record for the most stones produced by his patients.

My surgery lasted about 20 minutes and they removed the two offending stones along with 4 others that were still in my kidney. Everything went perfectly and I went home about 2 hours after surgery.

It's been 3 days and I feel pretty good other than pain, frequency, and urgency with urination (which isn't nearly as bad since I removed my stent) and just being super tired. As I continue to heal, I have been reflecting on the past few years and how many lithotripsies I've had....this was probably the smoothest.

Due to my kidney conditions, I will likely have more of these surgeries and I've learned what I need to be able to heal quickly and not make things worse (rest is super important). Now, I know someone will comment that I wouldn't get kidney stones if I didn't drink Diet Coke and while this is probably true for many people, it's not true for me. I have had to learn to limit my consumption, but I don't have to eliminate it. There is no cure for my disease and it will get worse as I age, so learning to limit and control it as much as possible is about the best I can do.