He got worse
TW: ableism, misogyny, mistreatment by healthcare providers
Alt text for screen readers here
I reported Dr. Waters and provided a lot of evidence of my experience with him being… less than ideal. When you report a doctor, they have to respond with a letter and you receive a copy along with information on any actions they took/didn't take.
I received the letter.
It was absolutely awful. I didn't think I could dislike him more - turns out that I can. I discussed DARVO recently and this letter was the definition of it. He denied any wrongdoing, attacked my character and made himself out to be the victim. He sprinkled in some lies as well.
In order to share the struggles that women and the disabled face in seeking healthcare, I'll be sharing the highlights of the letter. Identifying information has been marked out, including the name of the doctor and clinic. The only name not marked out is my own.
Starting off strong with some good old victim blaming:
I shared my bad experience with my first urologist and how she was dismissive of the recurring UTIs and kidney stones. I am a bit speechless on what to say in response to this; it's just straight victim blaming - "suspicious that she would change doctors after they were dismissive of her constant UTIs and it was probably her fault" would have worked as well. As if people don't change doctors all the time…
He was just getting warmed up!
I know the snippets of the letter are out of order; I don't have enough spoons to put it in order. I'm including some of the patient portal communications as well.
He mentioned that the initial appointment was lengthy, which is true. It was about an hour of him discussing overactive bladder treatments and me trying to get him to focus on the recurring UTIs and kidney stones. I told him that I needed to get those stopped and find out why they were happening before I could consider overactive bladder treatments.
It was nearly impossible to talk and he was on a long, constant spiel of overactive bladder treatments. They were good treatment options and it was informative - but my main issues weren't overactive bladder, but the recurring UTIs and kidney stones. I tried to get him to discuss the UTIs and he finally did at the end of appointment, but not before a long lecture on overactive bladder.
Trying to get him to discuss the current issues instead of overactive bladder is apparently manipulating him and trying to control him. I cannot fathom the amount of privilege and ego that you would have to have in order to consider that as attempted manipulation and control.
I admit that I did send a lot of patient portal messages. I asked a lot of questions and provided updates. Most of my doctors appreciate this and just add it to my chart. Dr. Waters, not so much.
He mentions several medications that I "demanded", those were medications that were mentioned in a lab report's notes and I asked if he would be prescribing those or not. He said my calcium levels in my urine were normal; they were not. My blood calcium was low and my urine calcium was very high and supersaturated with crystals.
Note that one of the mentioned medications was prescribed to me later by a nephrologist. It returned all calcium levels to normal and I have not had any UTIs since and very few, tiny kidney stones.
He called me non-compliant multiple times. Let's look at one of those times:
The appointment was scheduled on a day when the roads in between my house and the clinic were iced over and unsafe to drive on. The roads on that route go through really hilly areas with a lot of bridges, which would be even more dangerous than a flat road.
I asked about getting the bloodwork done locally and sending it to him. They sent an order to my primary care provider. They called me and let me know that they didn't take external orders at that clinic, but gave me the information for a nearby lab that did. I contacted Dr. Waters again and told them what my PCP said. Any time I mentioned it, they just told me that they already sent the order (to the lab that didn't take external orders).
As for the potassium citrate, which was another time I was “non-compliant” - I cannot swallow pills after my neurological injuries. He ordered an extended release capsule. Extended release capsules cannot be opened up and put in a feeding tube. He was fully aware that I have a feeding tube because I can't swallow pills - I would literally choke!
PEG tube similar to what I have
.I had a few discussions with friends, some in medical school, some in other fields of science about what I was going through. They mentioned that there are some genetic conditions that may cause similar symptoms; one of those is primary hyperoxaluria. This makes your body unable to properly handle oxalate and you excrete it in your urine.
Calcium oxalate and calcium phosphate are the most common types of kidney stones. I decided to try a low oxalate diet to see if it helped me. It did, which made me more concerned and prompted me to seek genetic testing. I found out that I have a genetic defect that causes issues with the calcium receptors in the kidneys. The extra calcium in the urinary tract can bind to oxalate in it - that's why lowering my oxalate input helped; I just had the wrong half of calcium oxalate.
He also said that I left the emergency room AMA (against medical advice). I have actually never left AMA, and you have to sign a waiver to do so. What actually happened was that they advised me to be seen, so I went to the ER. I was in the waiting room for about 90 minutes (it was very busy and I heard several ambulances). There was an extremely loud child that would scream for a couple of minutes straight, take a breath, and scream again. They weren't the patient and were there with two adults. Neither made efforts to calm them down.
The clinic called to let me know that they could see me the next afternoon. I decided to go home and pass my kidney stone in peace. My mom had a migraine from the screaming, and she is my caregiver.
I was emotional at that appointment and begged (not demanded) to be hospitalized. I had been completely miserable for a long time and I felt myself breaking down. I was eventually hospitalized for difficulties breathing, swelling, chest pain, and had to be put on supplemental oxygen.
While in the hospital, I demanded a nephrologist's consultation. The doctor asked me about my symptoms and how long it had gone on. He immediately asked me if I had undergone genetic testing. I had the genetic testing after a consultation with a genetic counselor.
It was positive.
Dr. Platinum was relieved that I already had the testing. He said, "oh that means that I just have to check your kidney function and I can start you on hydrochlorothiazide." He determined that no kidney damage had happened yet and started me on the medication. I was able to be discharged without oxygen.
Despite all the evidence I provided, there weren't any actions taken against him - or any other doctors. One used the fact that I had multiple complaints as "proof" that I was the problem. I submitted rebuttals in the past; those were not taken seriously either.
People often believe that reporting issues will always result in appropriate actions - this is unfortunately not the case. Most of the time, the responses are dismissed and only infuriate victims. The people who are supposedly protecting patients often don't; most of the regulatory boards I've read about act only when drug abuse is involved.
I provided a plethora of evidence to support myself that showed that he was lying and that I was telling the truth. I don't want to sue for stress and financial reasons. I tried to fight for myself, but ultimately, it's not enough to defeat systemic issues. These are the results of a broken system and there isn't anything more that I can do or say as an individual. I will probably be writing about my experience more, but I've exhausted all the options that I have that could bring me justice in this; I am just going to move forward in life and hope to never see them. I won't be silent about the issues, but as for this person specifically, nothing more can be done.
*not seeking advice or suggestions on this, I ask that you listen to the stories that I and so many other women and disabled people share and fight with us to change the systems that are crushing us and stealing hope from us.
