By Kathy Day
Last year I shared my story about kidney stones. I wasn’t suffering with a stone at the time and so I may have been a little arrogant in my comments. I wanted to write an addendum for the Costs of Care blog.
I am currently emerging from a serious bout with a 1.5CM kidney stone, very unlike my previous tiny 4mm stone 6 years ago. When I went to my local ER on May 17, I knew this stone was different. I had already suffered with kidney pain for 2 straight days, and I was exhausted from my attempts to drink tons of water and to pass it on my own. It was just too big to pass on it’s own. I peed in a cup for a urinalysis and the doc tapped me on my affected kidney. I got 4 pain pills and a prescription for antibiotics that I did not need. It cost $1500 for that visit with a $125 copay. The visit was hardly worth the copay. I left the ER without an accurate diagnosis of the location or size of my stone, and so I was left on my own to get that done. I tried getting directly into the Advanced Urology service that the ER suggested, but the doctor was from out of town, and the staff said they required imaging and blood work that I “would have to get through my primary care doctor”. The ER had failed to diagnose me properly, so there was an added expense and visit to my PCP. The test results didn’t come back to his office for over 2 days. I had repeatedly called them for results. I continued to suffer with this stone the entire time. I paced all night long, took boatloads of ibuprofen and used a hot water bottle over my kidney. Another attempt to see a second urologist presented more hoops to jump through and more rules. My PCP and I finally settled on a hospital affiliated service (my third and final attempt at getting into urology service), but I was told I would have to go to their ER (not the same one as before) to be seen by their urologist on call. This was where I finally put my foot down and told the office staff that I had been 5 days struggling to be treated for this stone, and that I had already been to an ER earlier in the week. I had endured the run around long enough. I finally had a kidney stone diagnosis with the x-ray image, and lab work to match, and I did not want to go into a chaotic expensive ER to wait my turn to be seen in triaged order. I was quite firm about what I wanted so she gave me an office appointment.
I found my knight in shining armor in that office. My new urologist immediately recognized my condition, and that I was very ill. He scheduled me for an urgent ureteral stent placement after his office hours on May 21. The temporary stent was placed to allow urine past my large stone, and to rest my kidney for 2 weeks. Then on June 5, when I had ureteroscopy and laser lithotripsy. Both procedures were done under anesthesia. I had serious issues with post- operative pain after the lithotripsy, and this entire experience left me weak and sick. I have only been feeling like myself for about 3 days. My kidney was struggling to pass a stone that it could not pass. My blood work showed a spike in my Creatinine level. I could have suffered serious long term kidney damage if I had not received care when I did. In total I suffered 7 days of kidney stone pain, 5 of which were completely avoidable and unnecessary. If the first ER had done their job, and not underused diagnostics, I could have gotten the treatment I needed much earlier, and skipped one unnecessary doctor visit, and the need to travel around my community to get blood work and Xrays.
In efforts to control costs and avoid overuse, providers must be very cautious to avoid underuse and failure to diagnose. I am a victim of underuse, and if I hadn’t been an engaged and determined patient, I could have suffered permanent kidney damage. Plus, this underuse (assumed to be an effort to control costs) ended up costing me and my insurers more money, not less.
I apologize if I mislead any patients in my earlier post about kidney stones. My lesson learned is to always listen if your body is screaming at you that something is very wrong, and be very determined to find the reason and get treatment. And caregivers must always be very cautious that in their efforts to reduce costs and overuse, that they do not under-use diagnostics and care for people with obvious symptoms of illness and pain.
Kathy Day is a Patient Safety Advocate, member of the Maine Quality Counts Consumer Advisory Council and the Choosing Wisely in Maine leadership team. She is also affiliated with the Consumers Union Safe Patient Project.