Buckle up for another long one. I am supposed to be going to watch my friend’s house and I haven’t been in the area since I lost someone very dear to me a few months ago. A life that should not have been lost. A life cut short due to one doctor and one nurse practitioner being way out of line and far beyond medical neglegence. I got involved and was made aware of this to late so every step was a fight when had I been there sooner, it wouldn’t have been so hard to get him the care he needed. This is his story, with details removed to protect patient confidentiality. Even though in this case I am not legally bound with this, I still follow it as a patient advocate. To not do so would be to cause harm and I took an oath. Being a compliant patient is deadly.
So earlier today, I told you I was going to circle back to my friend and that utterly clueless doctor with blinders so big you’d think they were trying to block out the sun. Well, here I am—buckle up, because this is one heck of a ride. You know how sometimes you hear about things that just make your blood boil? This wasn’t just boiling; I was a full-on volcano erupting.
Here’s the situation: my friend, bless his soul, crossed paths with this so-called liver transplant specialist, and let me tell you, calling this doctor “specialist” feels like a stretch. When my friend wasn’t ready to talk transplant, she apparently decided to take the “easy way” out and basically said, “Well, good luck then!” Here’s the kicker I didn’t even know about this until I got a call asking me for clarification on something in his medical chart. Cue me reading through it, and, folks, when I say I was livid, that doesn’t even scratch the surface. I was ready to flip tables. If emotions were Olympic sports, I’d have taken home gold in anger that day.
But wait, let’s rewind a bit so you get the full picture. My friend let’s call him Jack had been feeling a little off while on vacation. Nothing major, just that nagging “something’s not right” feeling. By the time he got back home, things escalated, and bam! He ends up in the hospital. His liver numbers were all kinds of wrong, so in swoops Dr. Blinders with her stethoscope and a degree that I’m seriously questioning at this point.
Now, here’s where it gets messy. Jack’s wife and I, we were on the same page, and that page said, “This doctor doesn’t seem to give a flying fuck about Jack.” It was almost like she’d already decided the outcome before considering all the facts. Her conclusion? Cirrhosis of the liver, courtesy of alcoholism. Really? I mean, Jack liked a drink now and then who doesn’t? But trust me, he wasn’t knocking back booze like it was water at a desert marathon. I’ve known him since I was 19, and sure, life got in the way, and we’d lose touch here and there, but he wasn’t the poster child for heavy drinking. Not by a long shot.
Here’s what really gets me, though this wasn’t just a case of “oops, I made a mistake.” No, this was negligence dressed up as professionalism. The signs were there, clear as day, that something else was going on, but it’s like she couldn’t be bothered to look beyond her initial diagnosis. It’s like going to a mechanic for a weird noise in your car, and they’re like, “Eh, sounds like the engine. Let’s just replace the whole thing,” without even popping the hood.
The worst part? Jack paid the ultimate price for her incompetence. This wasn’t just a bad day at the office; this was someone’s life. I can’t even describe the level of heartbreak and frustration that comes with knowing your friend could have had a fighting chance if someone had just cared enough to do their job properly. If she had just taken the time to dig a little deeper, to consider all the possibilities at the start, maybe just maybe Jack would still be here.
What truly set this situation ablaze was the realization that the diagnosis given to Jack a supposed alcohol-induced cirrhosis was not only premature but based on a diagnosis of exclusion. For something like this to be confirmed, every other potential cause must be ruled out, and yet, not even the basic groundwork was laid in Jack’s case. When I stepped in, I immediately spotted glaring omissions in his medical evaluations. For instance, his A1C a critical test reflecting average glucose levels over three months had never been conducted. This test is a cornerstone for monitoring diabetes, and missing it is akin to failing to check the fuel gauge while diagnosing car trouble.
High glucose levels, left uncontrolled, can wreak havoc on vital organs, with the liver and kidneys often being the first to falter. Jack’s liver was bearing the brunt, while his kidneys weren’t far behind, a situation that screamed negligence. I wouldn’t find out about this until it was getting really bad. Pride in a patient can be just as deadly, it is why so many of my friends have me as someone who can access their records. They want that second pair of eyes that can read those numbers and put things together.
To compound matters further, there wasn’t even an attempt to investigate a genetic predisposition for excess iron in the bloodstream a treatable condition that could have shed light on Jack’s deteriorating health. His genetic profile indicated he carried one gene for this trait, meaning it typically wouldn’t pose a problem, but his elevated iron levels told a different story. Not unheard of but very rare as you typically need the pair to have the issue, just like with a number of genetic possibilities as these are recessive.
The turning point came when I decided to make the daunting hours-long drive to ensure Jack received the care he desperately needed. During the appointment, I observed the doctor closely, ensuring I phrased my concerns in a way she couldn’t dismiss. Despite her blatent pride and inflexibility traits I’ve encountered and conquered in other professionals I knew the stakes were too high to back down, that and I don’t put up with this shit from them. Calmly seated in my wheelchair, I posed what seemed like a casual remark but carried the weight of a loaded cannon. “Did anyone look at his A1C? My cousin has type one diabetes, and I know that liver damage can result from unchecked glucose levels.” It wasn’t a question; it was a challenge a call to action she couldn’t brush aside.
When she finally ran the A1C test, it confirmed what I had long suspected—Jack’s levels were astronomically high, a clear indication of uncontrolled diabetes that had gone unnoticed for far too long. This wasn’t some obscure diagnosis requiring cutting-edge technology; it was a basic test, one that should be conducted routinely but had inexplicably been overlooked for years. The negligence in Jack’s case was staggering, and it wasn’t just the oversight itself—it was the doctor’s dismissive attitude that added insult to injury. Her reasoning seemed painfully transparent: if Jack wasn’t on board with a transplant, he wasn’t worth the investment of her time or resources.
What made it even more infuriating was the knowledge that this damage—this life-altering, irreversible harm—could have been prevented. Once the diabetes was identified and Jack was placed on the proper medications, his bilirubin levels began to drop—a near impossibility if alcohol had truly been the sole cause of his liver issues. It was a bittersweet discovery, a glimmer of hope that came far too late to save him. And yet, I couldn’t stop replaying the events in my mind, wondering if things might have turned out differently had I been involved sooner. But the what-ifs are cavernous pits of despair, and dwelling on them only deepens the sense of injustice.
This story isn’t just about Jack; it’s a cautionary tale about the dangers of being a compliant patient, of not questioning the professionals we entrust with our health. Time and time again, I’ve seen how passivity can be devastating. Jack’s case was no exception. The doctor’s refusal to consider holistic care extended to her advice on hydration, absurdly labeling Jack’s typical water intake as excessive. Her guidance undoubtedly exacerbated his condition, leading to kidney complications that could have been avoided with even a modicum of care and attention. As even 8 glasses was to much, this did cause Jack to keep dropping his water intake making things worse.
And then there was the bloodwork or rather, the lack of any meaningful follow-up on it. Jack’s CBC—the count of his blood cells painted a grim picture. His levels were critically low, eerily reminiscent of the struggles I had faced with my own daughter during her battle with an undiagnosed illness. It was like a haunting déjà vu, the kind that leaves you both furious and heartbroken. This was not just an oversight; it was a consistent pattern of neglect, a systemic failure that robbed Jack of the fighting chance he so desperately deserved.
The hospital stay was a whirlwind of chaos and frustration, a testament to how far unchecked negligence can go. The admission itself felt like a reluctant concession, as though the system was begrudgingly acknowledging the gravity of Jack’s condition. His kidney function had plummeted to dangerous levels unsurprising given the dehydration he’d been subjected to due to bullshit medical advice. It was heartbreaking but not shocking; the signs had been there all along, glaring like hazard lights on a dashboard. I had been fighting this doc and nurse practitioner for awhile now. They really did not like me to say the least but they never could argue with me as you only sound like a fool when you argue with logic, facts and medical training. They couldn’t even do a sterile field right with him. I seen it the one day and three times I made them redo the set up before the nurse got all huffy and said then you do it if I can’t seem to do it right. No shit, you do not shake a package over the field to drop the tool onto it, you aren’t even supposed to cross your arm over that field. They were contaminating it. I do have to admit I was smirking by the end and did nothing to hide it this time, it was more a challenge. I was saying without words “You have no clue what I know, I will call you out and I probably know how to report your ass to”.
They kept trying to circumvent me when I was put down as the person to contact regarding patients care, it did not go over so well. He wanted me to be that person because first off I could handle the pressure, and should the worst happen I can handle it and know what to do and what not to do when you lose a patient. Plus I would teach him and his wife why I was saying what I was, I don’t give the fish, I teach you how to fish. I teach you how to not be a compliant patient, it is deadly. What they were doing was illegal. They did not expect me to be there when they were trying this, so when they would call his wife’s number and caller ID showed it was them, I was still the one to answer. I was more then a little mad, my friend, a member of my chosen family was in danger because of this idiot.
Jack clung to me during this ordeal, his hallucinations blurring the lines between reality and fear. This was when he would get dehydrated, there was more then one time I pulled him out of this with being there, however I didn’t live there so I couldn’t do it enough to do more then give him extra time. Time he wanted as he was restoring his home after a fire. His reliance on my voice during rounds became an anchor, grounding him in moments of confusion. While I wasn’t physically present, the phone served as a lifeline, enabling me to advocate for him amidst the chaos. My words carried weight, and the mere mention of my involvement seemed to unsettle the residents and doctors who had the unenviable task of navigating the aftermath of so many missteps. That is after their first or in some cases second encounter with me.
As the rounds progressed, it was clear that blind faith in the liver specialist was hindering Jack’s care. Once again, I found myself having to push back against the deeply ingrained hierarchy of medical expertise. Specialists are often seen as infallible, their opinions unchallenged despite glaring contradictions in patient outcomes. But Jack’s chart painted a dire picture, one that could cost them their medical license as well it was so blatant. By this point, I am in full advocate bitch mode. Oh yea not something you want to see. I have been told by more then a few friends over the years that when I get the look that indicates I have gotten into “try it” mode to call them so they can bring popcorn but they never wanted to be on the receiving end.
I didn’t mince words when addressing the team. Politeness had its place, but this wasn’t it, not anymore, not when Jack’s life hung in the balance. “I’m sorry if you thought that was a question,” I said firmly during one particularly frustrating exchange. “I was being polite. You will get a hematologist, an internal medicine doctor, and a kidney specialist to consult on his case. If they can’t physically come to see a patient whose numbers fall squarely within their expertise, reviewing the chart isn’t hard. I was being polite.” My tone left no room for debate, and the tension in the room was palpable. The residents looked visibly uneasy, unsure whether to push back or comply. Even the doctor once I dropped a few key words and terms was also reluctant to argue with me, mainly because I was right and they could not deny it once pointed out. The gravity of the situation won out, and the consultations were scheduled.
The hemotologist insisted on transfusions and outline it very clearly in the chart that he was not to get that damn low again. The internal medicine team wanted to continue to care for him when he was released, not to replace the idiot doctor but to address issues that were there. I won’t get into the reasons, it is red tape bs. The kidney doctor, oh boy did she have some things to say, none of them good against the liver doc. Her and I actually got along from moment one. She liked that I didn’t sugar coat things, that I would try to be polite but would stand my ground. She admitted to hearing me while she was getting her equipment and was amused. She reminded me a lot of my pediatrician who taught me the most valuable tool is the patient and his day to day care givers. She had some choice words over the drink less and less anytime he had to interact with the liver team. They were not so great to say the least. She became involved in his care ongoing.
There are plenty more areas where I had to go “uhh take another look” or where I had to deal with the two idiots from the liver care team. Yes I did report them, they did not like when I asked for their pracid. Now most people use a different word for this but it is basically the medical equivalent of a business license. Gotta show it when asked or in this case give the number. It is primarily those in the medical field or who have immediate family involved or on occasion a friend, so basically those who know more then most people because medicine isn’t their area of expertise. Big deal, that is why I am there, that is what an advocate is for, to help you navigate this.
You see my friend had been showing massive signs of improvement until the water thing, . I think they were scared of what was to come if he did come out the other side. They knew I was more aware of what was going on then they wanted and that I had far more up my sleeve. It is key to never reveal how much you do or do not know when going toe to toe with these guys. I have a leg up because medicine is my calling and always will be so I have lots to draw on. What they didn’t expect what me to stay even after my long time friend passed away. They did not in their pride think that I would ever report them, yea their licenses once the investigation is finished mainly the red tape hoops they would be losing their license and unable to practice medicine again in Canada.
This is where the timing of when I got involved sucked. He was so far in this medical issue that I was having to fight for him every single step because they are the specialist they must know what they are talking about. Sorry uh nope, try again. I do not sit by when things feel wrong or I know they are wrong, listen to your instincts is key. Had I been able to stay there for a long period of time, it is possible things would have turned out differently. He was showing signs of improvement time and time again when I was able to be there in person especially once those who were common faces in his care spotted me there. They did their job and didn’t dick around in ways most would see, to bad for them I did see and I did call them out.
I will never sit by when I see something going on that is wrong, I have even piped up for the patient in the next bed in the ER when it is curtains. I don’t care. I took an oath to do no harm. There were no except when’s in that at all, or an end to it. I may take this further then most however to me my word is my bond, how can you trust someone who breaks their oaths. My oaths are not given lightly, and they hold indefinitely, no matter where I am. I do not like having to advocate. Honestly I wish I didn’t need to do this job because the need didn’t exist. However it does and until we start questioning more this will be the case time and again. Lives lost due to pride and the god complex, or damage done that can not be reversed. I do take this personally, I do get riled up, I also know how to channel that into this area.
So yeah, I’m mad furious, actually and I’ll probably stay that way for a while. But if there’s one thing I’ve learned from this, it’s that we have to be our own advocates. We have to ask questions, demand answers, and never settle for anything less than the best when it comes to our health or the health of the people we love. Because if we don’t, who will?
Who am I? 
I would love to hear from you!