My Battle With Kidney Stone Disease

kidney stones pregnancy story
I can’t help but think, what if my initial visits during my pregnancies had been taken more seriously, could all this traumatic and virtually life threatening treatment have been spared?
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In October 2013, I was blissfully plump with a little human growing inside me. I had a hard pregnancy, making several trips to the doctor’s office with curious discomforts, and blood in my urine upon every single visit. The cause, according to my OB-GYN, was urinary tract infections, to which they would always give me this degrading speech about how to wipe myself properly and take these antibiotics for the full ten days as prescribed.

I was always awakened suddenly with sharp, stabbing pains that would taper off into dull, and presistent pains in my left lower back, that would stay no matter the Tylenol or antibiotics taken to treat these “urinary tract infections” I was consistently diagnosed with, and I was always under the assumption I was having contractions. I still recall the night my mother had to drop me off at the ER because we both were sitting on the couch and thought my water had broken. It turned out that I had urinated on myself without any sensation of needing to urinate. This was of course brushed off as “the baby must have caused you to wet yourself”.

Finally, I make it to term, December 2013, my due date was Christmas day. I was pre-scheduled for my C-section on December 21st. I was so excited to finally deliver my little boy, as out of three pregnancies, this one had without a doubt been the most painful and over shadowed by constant consumption of antibiotics and excessive tiredness.

I was attending my mother-in-law’s birthday dinner on December 16th, 2013. I clearly went into labor while sitting at the table, even passing what I believed was the mucus plug as it is called. My mother-in-law rushed me to the hospital, because I just knew these contractions were too close and I am not able to give birth vaginally. She of course was just hoping I would deliver her grandson on her birthday. Either way, I knew he was coming.

I have an emergency C-section the following morning, and everything went smoothly. I gave birth to my 8lb. 6oz. bouncing baby boy, he was the spitting image of his father, and already had his mannerisms to boot. I could not have been happier to finally get some relief.

Although, the curious thing that happened in pre-op was yet another red flag for me. As I am watching my bladder empty into the tube from the catheter, I notice big white pieces of I am not even sure what floating rapidly all the way through the tube, and down into the bag attached to the operating table. I asked the nurse “what in the world is that?” She said she was not sure but they run analysis on my urine, so they would let me know if anything was wrong. I knew something was clearly wrong here. It looked as though it was large pieces of tissue, coming from inside my body.

As I already stated, my son arrived, he was finally here. I was placed in recovery with my beautiful baby, where the nurse goes over all the steps of being a new mom, and I had to chuckle because with each son I gave birth to, the guidelines were different every single time. Through the happiness of having my son here, I was still in a very large amount of pain in my lower left side. No matter who I explained this to, I was told the same thing even in the hospital, I had a urinary tract infection, but not to worry, I was taking antibiotics to clear it up, and that some of the pain must be stemming from the C-section I had just had hours before. I was so upset, I was confused, and I was in pain. I felt like I was crazy at this point. Here I was in a hospital, with people who are supposed to know what is wrong with me, and listen to me when I tell them I don’t feel right. Not to mention, I had this bag of urine on the side of my bed to which was full of the same white substance that filled the bag in pre-op.

I was eventually sent home with my proper pain medication and my antibiotic, and given my strict instructions to make sure I was taking them all the way through. My urine was still dark, and what I could see in the toilet, still had these white particles within the contents coming from my body. I was still in excruciating pain, and I was even advised at my 6-week checkup, it was simply from my C-section. I was once again advised that I in fact still had one of those pesky urinary tract infections and I needed to take better care of myself. I finally had enough. I proceeded to leave this appointment and head to the ER where I sat for 3 hours waiting, because in triage I was not an emergency. Finally, they call my name, I begin to cry. The nurse takes my temperature, 104.3. She calls her supervisor over to me, and she proceeds to interview me.

“Are you experiencing any flu like symptoms?” “Are you vomiting?” I stopped her. I felt almost like I screamed at her “I CANNOT MOVE, THE PAIN IN MY LOWERBACK IS ABSOLUTELY UNBEARABLE!” They move me to a bed. I am laying in this bed in the emergency department, they immediately administer pain medication through my IV, to which I all but pass out from the strength.

After about an hour or so, this very nice, young emergency room doctor comes in the curtain to advise me that he cannot establish what is wrong with me, but I had an extremely high fever for not having the flu. He advised me they will be performing an ultra sound on the area that is affecting me, and he is hopeful and sure that it very well could be a result of my recent C-section.

He put the warm goo across my left lower back and ran the wand over the area, he snapped several pictures along the way, and seemed to be enlightened. He turns to me and says, “well there is your problem Amber, do you see that right there?” I am looking all over this black screen, trying to analyze what was in front of me to no success when he interrupts the confused look I must have been giving him with his continued sentence “that is a small kidney stone, and I am sending you for a CT scan to confirm my findings”. I instantly felt some sort of relief, not from the pain, but from the anguish this has taken on me mentally, because I was not being treated like I was crazy.

Upon the results of my CT scan, I am met by a much more concerned nephrologist who came in with the news that I in fact have a kidney stone so large it is virtually the size of an orange; this is also complicated by the fact that it is a staghorn kidney stone, and is in fact surrounded by about 100 very small stones that range from the size of sand all the way up to the size of a pea. Also, that due to the bodies inability to pass this stone, it caused a severe infection around the kidney and in my blood.

I was in shock. I had no idea how this happened. I was pregnant, I was eating right, drinking tons of water, I had always passed off the degrading assumptions I was not cleaning myself correctly, so, now I had to sit here and ask a million questions. Am I going to lose my kidney? Am I going to die? What about my children? Can this be cured with surgery? To which I was met with answers I did not want to hear. He said, “we don’t have a very easy way to remove this stone, also, due to this infection around your kidney, we will need to first insert a drain directly into your kidney to relieve this extra fluid and allow it to heal somewhat before we can do anything further.”

This cannot be happening, I have a newborn breast feeding baby at home, how can this be happening to me? I accepted the prognosis, and I was moved upstairs to a room, where I was hooked up to an IV that had 3 antibiotics running through it and of course medication to relieve my discomfort. The following morning was my first surgery, the surgeon and urologist came in to explain that I will be given a local anesthesia and be placed under an x-ray machine, a small incision will be made in the middle left side of my back and a tube will be placed directly into my kidney. I was instantly afraid. I had never been in this type of situation before. They of course assured me that everything will be fine, and this should provide some relief instantly.

To say I would not feel a thing was a small white lie I am sure, because as soon as I felt that tube inserted into my back I let out the ghastliest scream, and the next thing I remember is waking up back in my room, with this tube running from my back to a bag that was wrapped around my leg. It was quickly filling with the contents of my kidney, some urine, some blood, and floating around in the bottom were several small stones that were flushing directly out of my kidney. I was floored. That provided me some relief to know that this ridiculous tube coming from my back was in fact doing its job.

However, a week goes by and here I am sitting in my hospital bed. Waiting. I had to find something to amuse me, so I started calling the nurses vampires, because they would sneak in late at night to steal my blood for testing. They always got a laugh out of that, because they said, “I guess we are kind of like vampires huh?” I was even left with a bruise from one of these blood drawings that resembled Batman, and to this day, my fiancé refers to me as “Batman” because of it.

February 11th, the day has finally arrived! The doctor comes into my room and says the infection has finally subsided enough to perform this surgery that will break apart this massive staghorn kidney stone. He advised me he had been working with kidneys for over 20 years and he personally has not ever had to work with one this large and it has been challenging him in his mind as to how exactly he was going to get rid of it. I was just grateful to finally see some light at the end of the tunnel and know that relief was finally coming.

I was scheduled the following day for surgery, I was in for about an hour I was told, and when I was finally conscious, I couldn’t even really tell I had surgery. I look down at this hideous bag still attached to my thigh, that is when I realized I knew I had surgery. The bag was filled with stones and blood and urine. I could not believe all of that was coming from one kidney.

The next morning, the doctor arrived to check in on his patient, and advised me of the fact I would need additional surgery, following the first surgery, they were only about to get about a ¼ of the stone broken up, and needed to let some of the debris pass before they could go back in and break apart more of the stone. This absolutely broke my heart, here I was two weeks into a hospital stay. I had to give up breastfeeding my baby, because my body was under so much strain and medication, I couldn’t produce milk any longer. I was away from my family. This was the worst feeling in the world. I asked him when I would be getting this other surgery, he advised me they are still up in the air that it depended on my body’s ability to push out what is there now. I cried. That is all I could do is cry. I wanted to feel better, but I wanted to go home too. I felt so empty.

About three days later, they came in and advised me “Good morning Mrs. Amber, you are scheduled for surgery today with Dr. Kim”. Those words made me so happy. That meant my body was fighting infection and doing what our body was designed to do. 8 a.m. came, and I was ushered off the operating room for the second round of surgery. This time, they removed the stent in my back and replaced it with a stent in my bladder. This was a good sign, this meant that everything went the way it was supposed to.

My doctor came in to speak with me after this surgery and advised me he broke up about 90% of the stone in all. That I may experience some discomfort as I have this stent in my bladder to pass the stones upon urination. Then, this is followed by “BUT”, he advised me there is another stone the size of a golf ball that was not seen the first go around because of the much larger stone they were working toward removing. I started crying like a baby again, because I had just had enough. He advised me that I would in fact be able to return home, and in two weeks I need to schedule surgery with his outpatient surgery center. I was elated, I got to go home for what seemed like the longest prison sentence, I mean hospital stay of my life.

While I was doing my happy dance in my head, my doctor was trying to find the rhyme and reason behind this severe case, that he himself had not even witnessed in twenty years of practice. He said all of my test were inconclusive, and advised this could be a reoccurring thing. My head dropped in dismay to think I could ever have to go through this again.

Flash forward two weeks later, my surgery was scheduled. Once again, he said he performed this surgery successfully, but he found that I still have a stone the size of a pea within my kidney; and he further discovered a stone about the same size in my right kidney as well. He said we will continue to monitor them, and those should pass normally with some discomfort but never the less they should come through just fine.

I am now three years out from these procedures and I still struggle with my kidneys. I have passed several stones since then, and one caused me to black at while I was at work, thinking my appendix ruptured from the pain, that was the stone on the right side he spoke of. I have since been diagnosed with “Kidney Stone Disease”, and I must monitor my kidneys on a regular basis. I have become accustomed to pain in my lower back and frequent trips to the emergency room for care when one of these fire storms decide to travel from my kidneys to my bladder and out of my urethra.

Although I am extremely grateful for the care I received from this amazing urologist, I can’t help but think, what if my initial visits during my pregnancies had been taken more seriously, could all this traumatic and virtually life threatening treatment have been spared? I do not have full functioning kidneys because of the immense stain they were under during the severe infection they endured. I must monitor my food and drink intake and be very cautious of the nutrition labels on foods. I feel weak and tired a lot of the time, and they advised that as I get older, I could lose function in my left kidney which will imply dialysis and possible removal or transplant.

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