Through the darkness and into the light (plain text/draft)
The story of trying and failing to get help for chronic UTIs and kidney stones, before finally getting the help I needed - but almost too late.
Names changed to protect privacy. I'm not trying to doxx anyone, just share my experience. There are behind the scenes events going on to hold these people accountable, so please refrain from giving advice on what actions to take against those mentioned - it's likely being done.
This is the plain text version; I'm releasing the plain text version first, to inform my friends and family about my hospital stay, then a regular post format with pictures and links.
To say it's been a rough past 18 months is an understatement.
December 2021, I had an E coli UTI, but it cleared up and all seemed well; I had only had one of these every ~3 years. January 2022, I caught covid-19 and then had another UTI. I figured it was probably something with it tanking my immune system.
Then they just kept coming. I had at least one a month, but sometimes more.
I started going to my urologist, Dr. Macrobid, frequently for bladder instills (putting liquid medication in my bladder) and tests. The instills helped initially, but soon stopped helping at all. I was peeing at least 30 times a day, waking up at night multiple times, had a lot of pain, was swelling from retaining water (though I peed constantly, the volume was very low), and started having frequent kidney stones. I was miserable; my urologist couldn't find anything that was causing it and told me to take a preventative dose of antibiotics and preventative antibiotic instills.
The "preventative" antibiotics failed to prevent anything.
I can't go into too much detail yet, but it was an awful experience that led to me firing her and getting in contact with people who will hold her accountable.
I decided to find a new urologist, and went to see Dr. Waters.
I've told the story more in depth, but to summarize:
He didn't believe anything I told him and focused only on telling me to drink more water and talking about overactive bladder treatments. He was very misogynistic and as misogynists often do, insisted I was fat, lying, exaggerating, and the cause of most of my issues. I fired him as well.
Towards the end of my time under his "care", I remembered learning about multiple genetic conditions causing recurring UTIs and kidney stones and scheduled a consultation with a genetic counselor. I suspected an issue with oxalate, because of my symptoms and the stone composition. I put myself on a low oxalate diet, which gave me some much-needed relief.
My genetic counselor also suspected a genetic condition and tested me for multiple conditions that cause recurring UTIs and kidney stones. There were a few major suspects; I tested positive for autosomal dominant hypercalciuria hypocalcemia.
I seemed to have found the answer, and she gave me multiple sources of information on the condition and I did research on it. Problem found and solved, right?
Wrong.
I shared the results with my doctors and tried to get a referral for a nephrologist. The condition is too rare to be in the local hospital's referral forms and it automatically rejected my PCP's requests for a referral. She attempted various ways to request the referral, and eventually got one. It was the end of March and the nephrologist was so booked that my appointment wasn't until the end of May.
I tried desperately to hold on until then. The symptoms consumed my life and I was stuck in bed most days and just trying not to die. The swelling was the worst it's ever been and changing positions was starting to change my entire appearance. If I stayed in a position for at least an hour, the swelling started to pool with gravity. I started developing stretch marks from the rapid swelling.
The comments about weight gain were common now. It was coming from most people now and people assumed that I was lying out of shame. I was hardly able to eat, but gained weight. Lots of people gave me dieting advice and rolled their eyes if I told them I was retaining water and barely eating. People seem to disregard weight gain for any reason other than diet and lifestyle and fat.
I hated looking at myself in the mirror. I avoided looking at my reflection or myself in pictures. Seeing my bloated body always came with the voices in my head criticizing me, flashbacks of people not taking me seriously, and memories of being devalued as a person. I never criticize another person's weight, but I criticize my own harshly and without mercy. The weight gain was extremely painful as well, so I knew when I saw myself, that I was seeing myself in pain too.
It didn't slow down at all, no matter what I did. Soon, I felt myself returning to the darkness like I'd been in before my brain tumor surgery. I wasn't suicidal and didn't want to die - but I also didn't want to live. I know if I didn't get help soon, it would get very dark.
May 14, 2023, I had my 19th UTI and spent the morning and afternoon in the ER. I finished my antibiotics, but started to get really sick and was back in the ER ten days later. I pointed out the flank pain and location to the doctor and mentioned that I thought it was my kidneys again. He confidently told me that my kidneys weren't there and pointed out the "real" location.
I was told it was the 20th UTI. I had a complete mental breakdown and was sobbing, crying, and swearing. Still, they sent me home. I continued breaking down and sobbing over everything. Every couple of hours, I'd have a major panic attack and believed that I had died years ago and I was in hell. In the middle of the night, I had one of these panic attacks and sent a message to my PCP that I had died years ago and was in hell and was "proving" it by sending this message.
She wasn't in the following morning, but one of her colleagues was and saw me that afternoon. It was getting difficult to breathe and took a lot more effort. I barely managed to get to the appointment. When they took my vitals, the equipment started beeping loudly and multiple staff members rushed in the room.
I was hooked up to the EKG machine, pulse oximeter, and blood pressure cuff. The machines were beeping wildly. The doctor came in fast and looked scared. He wanted me to go to the ER and be hospitalized and was afraid if I went home, I'd die. I'd seen one ER doctor that was terrible and would just tell me to poop and take ibuprofen. I told him I wouldn't go to the ER if that doctor was there, but if he wasn't, then I would. Thankfully, he wasn't, so I went to the ER.
I went to the triage, and the machines started beeping and flashing. I was so tired that I floated in and out of sleep regardless. They got me into a trauma room as soon as it was cleaned and I heard an announcement for a sepsis alert for room 4 - my room.
I was kept on the EKG and monitored closely. They put me on oxygen and my 87% oxygen saturation rose to a normal level. My heart was still racing, but went down to 138bpm.
They did several tests and admitted me to the hospital. My hospitalist was Dr. Adipose, who I'd briefly seen when admitted to a different hospital.
It was normal at first, but he was aggravated by my insistence for a nephrologist consultation. He did a few blood tests, but didn't do anything new and when my blood cultures were negative on May 27, he wanted to release me.
I objected and told him that I was still extremely ill and he couldn't tell me why. My urine had trace proteins and my C reactive protein (CRP) was 46.9 (normal is below 5) - all glaring signs of something seriously wrong. My swelling was so bad that I gained 10 lbs in two days without eating much and my mickey button had to be replaced with a PEG tube. He couldn't give me any answers for what was going on and called it an "outpatient issue".
I requested a new hospitalist. Immediately after my request, I saw that he'd put that I was severely obese in my chart. Now I was seeing red.
My nurses attempted to talk to him as well, but he was annoyed and tried to leave the room. Hospital policy requires a final discussion with the doctor before getting a new hospitalist. He thought I would be an easy target and he was about to learn how wrong he was.
My nurse came in with him for the discussion. I recorded the conversation without his knowledge (I live in a "one party consent" state in regards to recording conversations and am within my rights to record conversations with my doctors without their knowledge or consent). I started out with a normal conversation and let him get comfortable before I started to use my medical science knowledge from college.
He was completely thrown off guard and got very flustered. I called out every lie, inconsistency, and gaps in care. My nurse and my mother were in the room and agreed to let me handle him. He tried his hardest to convince me not to have a nephrologist consultation - despite having a genetic kidney condition, which I suspect he'd never heard of - and I was nice enough to explain the basic biology of it all.
He was extremely flustered by the end of the conversation and sounded emotional, and attempted to run out of the room. My nurse blocked his path and he almost fell trying to stop. A kind doctor I hadn't seen before, Dr. Al, came in soon after and introduced himself as my new doctor.
He listened carefully and took notes as I spoke. I showed him some of the reports from tests (as I attempted to do with Dr. Adipose). He agreed to do the nephrologist consultation and within an hour of him leaving, another doctor, Dr. Platinum, came into my room.
I had been asleep, but almost jumped up when he introduced himself as the kidney doctor. My mom and I both let out an involuntary, loud sigh of relief.
We discussed my medical history and he did a general physical exam.
"Have you ever been tested for autosomal dominant hypercalciuria?"
I perked up and said that I had and it was positive. He perked up.
"Oh, so that's probably most of this. We'll get it taken care of."
I was stunned. A few hours later, I had a (painful) kidney ultrasound. Dr. Al returned the following morning and let me know that I had no permanent kidney damage and Dr. Platinum would review everything again but I would be home soon.
At 11am, I had the first dose of the treatments. At 11:30am, they let me know that the prescription was sent to my pharmacy and I could go home. The hospital would send a report to the doctor I was scheduled to see and I'd continue with treatments and also stop some medications.
In less than a day, the "unnecessary" nephrologist had identified and started to fix issues I'd had for 18 months. Dr. Platinum had saved my life in 19 hours and I wouldn't have to wait until I had permanent damage to get help.
I've started getting rid of the massive amount of fluid and my heart rate is 110bpm and I don't need oxygen to breathe. It's been a rapid, unexpected turnaround. I have a special place in my heart for my nurses, Dr. Al, and Dr. Platinum. We won't discuss my thoughts on the bad doctors, and just let the processes of holding them accountable speak.
The bonus? The urine sample showing the 20th UTI was contaminated and I didn't have any infection - as confirmed through multiple tests and cultures of samples.
Moral of the story is to listen to your patients, don't make assumptions, and don't drag out helping someone. If you don't feel like you're being listened to and cared for, ask questions and if they can't answer it - get a different doctor.
