*** This is a long post. The first 4 paragraphs discuss my journey with chronic kidney stones. Starting in paragraph 5 I discuss my current situation, plan and explain the long post. Feel free to jump to end if prefer to not hear my story 🙂 ***
Kidney Stones have been part of my life since I was young. I remember I would get sick with vomiting, a terrible pain in my side and hot and cold sweats. My mom would take to the doctor and the doctor would say it’s just a stomach bug – “she will be fine in a few days.” Usually after a few days the pain went away and I was back to my normal self. One time my mom and I decided that it was not a stomach bug and kept after the doctor until they sent me to specialist. The specialist I was sent to was general surgeon who specialized in abdominal pain and disorders. He was quick to recognize that my issues were not stomach related and sent me for CT scan. The scan show a kidney full of kidney stones, he sent me to a urologist (Doctor #1). It took two surgeries but he finally got them all removed but it was not over that simply. The urologist removed the stent,that went from kidney to bladder to soon and the ureter collapsed; I ended up having emergency surgery to place another stent, which remained in for at least 2 months. After the stent was finally removed I got a kidney infection that lasted over a month.
I thought after I got kidney stones once, I would never get them again. I was wrong. Two years later, I was not feeling right and went to the doctor. The doctor was concerned about the amount of blood in my urine and sent me to a urologist (a different one this time) (Doctor #2). The urologist told me once again I had stones. When he went in to remove them and he found that my ureter was full of scar tissue, before he could get the stones he had blast scar tissue away. He got me fixed up and sent me on my way. Two later the situation repeated itself. This time I was in graduate school and doing an internship, so I went to a doctor (Doctor # 3) near where I was doing the internship. This doctor’s fix was to let the stones sit in the kidney until the kidney was so full stone that the kidney would no longer be functional thus having to be removed. I did not agree with this doctor approach, so I went back to the doctor I had before (Doctor #2). By the time I got to him, I had a bad infection. The infection was so bad I had to hospitalized. He was able to removed the stones with no issue and then we decided every 6 months I would go in for an IVP to check for stones. I also learned the symptoms and would go in before I got an infection or the stones got too bad. One of the most important things I learned is when I was not feel right or feel something is wrong I need to go the doctor. Every couple of years a kidney stone would appear and I had more surgeries but they were not bad and I rebounded from them pretty quickly.
Fast forward a few years, I moved to a new area and was too far to continue seeing the urologist (Doctor #2) I was seeing. I wasn’t even there a year and I ended up in the ER with terrible side pain and uncontrolled vomiting; a CT scan found more stones. The urologist (Doctor #4) I went to, understood my past history and proceeded with caution when he went in to remove them. Again a bunch of scar tissue had to be remove just to get to the stones, he was able to remove a couple of them but some of the stones were lodged in the top of the kidney and he could not get to them, plus he was concerned about the damage the scar tissue was causing in the ureter.
I was sent to see a specialist at UT Southwestern Medical School’s Urology Department. The urologist (Doctor #5) I saw was a kidney oncologist and one the leading surgeons in kidney reconstruction surgeries in country. The specialist looked at the situation and reviewed my history, he said before he would do any type of reconstruction surgery we needed remove the stones, do some test to find more information about my kidney and figure out what was causing the stones. He referred me to his colleague who was a specialist in kidney stones (Doctor #6). After meeting with the new urologist she explained that she would do a procedure called percutaneous nephrolithotomy, which included her making an incision in the back, through which a thin tube will be inserted and the kidney stones will be removed with a telescopic instrument working through this thin tube. After the surgery I had to spend several days in the hospital and was left with the tube and a nephrolithotomy bag coming out of my back for six weeks. After a month they started running various test to access the health of my kidney and if I was candidate for reconstructive surgery, if it was needed. After all of the test were run Doctors #5 and #6 agreed that I was candidate for surgery but Doctor #6 thought that the kidney stones could be controlled through diet and medication. It was determined that I was producing Calcium Oxalate stones. The stones could be prevented by a combination of medicine and by going on a low Oxalate diet. It took several months but for me to settle into a Oxalate free diet and the doctor did a bunch of test to make sure I was on the right medications. After a year of being kidney stone free we were pretty confident it was working and there was no need for reconstruction surgery. But then, I ended up moving again. Doctor #6 referred me to a doctor (Doctor #7) in my area that she had a lot of confidence in. After I got settled I went to see Doctor #7, he picked up right where Doctor #6 left off but when I returned for second appointment with him I learned that he was relocating and I was placed with another doctor (Doctor #8). Doctor #8 tried his best to keep up with what Doctor #6 and #7 had put in place, then I moved again.
When I moved to the Cincinnati area, I didn’t know who was who in terms of urologist. My family doctor swore she knew the test to do and knew to regulate the medicine. After seeing her for over a year, I began to questions her about running test or doing scan to make sure everything was regulated. She claimed I was doing fine. I was told I had no pain so it was not likely I had stones.
After I had surgery, to remove an ovarian cysts, at the beginning of November I got a kidney infection. The doctor who did the surgery put me on an antibiotic. After I was done with the antibiotic the infection showed right back up, so I called the doctor and he put on another round of antibiotics. Then I hurt my knee and I could not get swelling out of my leg and I just felt yucky and was in a lot of pain. They finally had to put me on steroids to get the swelling out (which also helped me feel better). When I went in the for the arthrogram on my knee, they had trouble getting the needle in my need because of calcification and suggested I get blood work. The blood work show signs of something going on with kidneys other than an infection, so they ordered a CT Scan, with 30 minutes of having the scan, I was told my left kidney was full of kidney stones and in the process of shutting. I immediately was put in touch with a kidney stones specialist (Doctor #9) After discussing my history and the results of the scan with the Doctor #9, we decided that we would start from the beginning.
This Tuesday, I having surgery to remove the stones. At the time Doctor #9 is going to up through my bladder using an ureteroscope. If all goes well he will be able to remove the stones and see how damaged the kidney is. He will also place a stent to make sure my kidney heals correctly. There is a chance they will not be able to get to stones and will have to repeat the percutaneous nephrolithotomy Doctor #6 did. After the kidney stones are removed we are going to focus on prevention and hopefully get my medications regulated and my diet reworked.
So why I am talking about this on here…
First I want to document my journey. Chronic Kidney stones are not common. Second I was to document the diet process – Oxalate Free Diets are not common.
When you mention that you have kidney stones to people, you commonly get the response: “Oh you don’t drink enough water.” Hydration is only a part to producing kidney stones. Diet and Lifestyle are also a huge factor as is heredity. Heredity is another of the causes for my stones.
From time to time I will do series call “Kidney Stoner” where I will document what is going and the changes I am making to my diet. I plan to post recipes and talk about food that both bad and good for kidney health and stone production.
Finding Amy 