When I was a sophomore in high school, I joined the debate team to get close to a guy. I didn’t get the guy and was only a mediocre debater at best, but 3 years in debate did teach me valuable early lessons that I use almost daily. I learned to triangulate my data, I learned to analyze statistics, I learned about logical fallacies, I learned to look skeptically at sources of information and look at a variety of data that came from different places, I learned to observe how relationships and status bent opinion and a willingness to speak out.
I went to high school in that ancient time before the internet, but now, putting those lessons into practice is easier than ever as the whole of human knowledge is practically at our fingertips. We google everything, and there is now much information one can find readily available that teach the same lessons I learned in debate. Looking at information with a skeptical eye, discerning the source, looking for biases, etc. are lauded as key skilled any savvy internet user needs to know.
Except in one area…medicine. There are just as many articles warning people to stay away from Dr. Google as there are telling people to triangulate their data. It seems in medicine, your doctor knows best and you are only being a fool if you look things up on the internet about your condition. “Talk to your doctor.” seems to be the refrain, and if you say you heard something about your medical condition on the internet, you will get rolled eyes and a groan from your medical practitioner.
This makes sense to a degree. Snake oil sales sites are prolific on the internet. Many magical cures are touted with no peer reviewed, FDA approved scientific evidence. There is also the psychological anxiety that can happen when you look up your headache and find that you may have a terminal brain tumor (when you likely just slept wrong last night and have muscle tension.) Also, everyone on social media has some good advice about that headache because their mom’s brother’s girlfriend’s stepdad had a headache once that was probably a terminal brain tumor and he cured himself with elderberry tea.
So, yes, all the same rules I learned in debate apply to anything you read on the internet.
However, cutting oneself off from looking at all resources besides your doctor is not the right answer either. Doctors have very valuable expertise in certain areas and their opinions should absolutely be considered in your care. They are usually the only ones examining YOU with access to YOUR particular health data and know YOUR particular situation. Nothing you read on the internet can replace that. But doctors are just people and are fallible. In addition, medicine as it is practiced today has some serious weaknesses that practically demand that we develop the skills to become our own self-advocates. Put in the right perspective and used wisely, Dr. Google can be a valuable tool that enables you to get the best outcomes you can from your health care team.
In my own life, triangulating what my medical practitioners said with Dr. Google, along with social networking and other outside-of-my-doctor research has probably saved my life, and at minimum increased the quality of my life on countless occasions. I have a somewhat (but certainly not extremely) complicated medical history. Since I was born, I have had hearing, vision and kidney impairments that doctors could not discern the cause of and often didn’t know what to do with.
I could give many examples that have to do with my vision, hearing, gall bladder, 2 pregnancies and other examples. But let’s narrow it down to my kidney disease. When I was 14 and was in the hospital for an eye surgery, my mother was told I had protein in my urine, a sign of kidney disease. But they also shrugged it off like it could just be a fluke because of the surgeries I had recently had or medication I was taking. It was my mother who did a bunch of research, including finding that I had records of protein in my urine since I was 2 years old that no one ever flagged. She pushed to have me retested and to go to a kidney specialist when none of the doctors did. She then pushed to have me tested for lupus and a number of other things that she researched that it might have been. Although all the findings (including a week long stint at the University of Iowa to rule out Stickler’s Syndrome) were inconclusive, it at least made me much more aware that I had this kidney condition and that I would need to be tested once a year from then on.
Fast forward to one day when I was 28 years old. I was walking around a grocery store when all of the sudden I doubled over in horrible pain on my left abdomen. It made me dizzy and want to throw up. My partner and I had to abandon our cart and leave the store. The pain subsided about an hour later, but would return on and off at that level of severity at least once every couple of days for the next year. I went to several doctors, but no one did anything about it for months. Finally, I went to the ER. At the ER, tests ruled out ovarian cysts and colon issues. I was sent home. I’m pretty sure they thought I was crazy.
I started researching not only my past medical records but also started talking to people with chronic pain on the internet and looking up possible causes. I found in an old Vocational Rehabilitation report (for my deaf blindness, which also had required a series of tests) that said the doctors found a small kidney stone in my left kidney. Hmmm. No one ever told me this. Could this be what is causing my pain? I started researching if a kidney stone could cause pain in the FRONT abdomen, not just flank pain. Why, yes it could. Although rare, it can happen that way if the stone is particularly large and can’t pass.
I had moved so went to a new doctor. She took my kidney theory seriously even though she said she had not heard of that before and sent me to get scans of my kidneys. There it was, a huge kidney stone that was now much larger than it was a few years ago.
I went through 3 unsuccessful surgeries to get it removed. I had been hospitalized 4 times and still had this daunting pain that came and went. My surgeon seemed at a loss. Again, word of mouth and some googling led me to Dr. Fuchs, who was referred to me as a “cowboy surgeon.” I went to my doctor and asked him if he could talk to Dr. Fuchs. My case was presented at a conference that Dr. Fuchs attended, and he took on my case, inventing a surgery just for me that went through my thoracic cavity to access my kidney. Problem solved, one and a half years after the pain began. (I had to shout out Dr. Fuchs by name here because you have no idea how grateful I was to this cowboy surgeon for ending my pain. He later also did a free snip on my husband at Planned Parenthood, so he gets high marks in my book!)
After that, it seemed like smooth sailing for awhile. I went to my nephrologist dutifully once a year. I did lab work. Every trip he said I was fine, nothing has changed or it changed so slowly that it wasn’t of concern. Every single year he told me I was the healthiest patient he had. Every single year he talked to me for 2 minutes about my kidneys and then 18 minutes about our similar-aged kids and my guide dog. It seemed like an obligatory pro forma I did just to keep my mom happy, and then just to say I was doing the things I needed to do for my health. Sure, maybe someday, when I was 80 or 90, my kidneys might end up being my downfall, but for now, it was just a weird little idiosyncratic thing I had, nothing to worry about.
My primary care provider always acted like I was dying. She seemed confused by my nephrologist’s laissez faire attitude.
There was a period of time when I thought I was having a heart attack all the time. My doctors told me I was just “deconditioned” even though I walked and exercised regularly. I ended up passing out in a transit center and being taken by ambulance to an ER. I found out I had chronic low potassium, it had been there for months. and yes, it was kidney related. I would have to take medication for it from then on.
I started really having to manage the spoons. My energy level was really low. Was I out of shape? Was this old age? Was I just lazy? I was getting headaches, I would need to rest after taking a shower, brushing my teeth, or climbing the stairs. My PCP kept saying, talk to your nephrologist, my nephrologist said I was “the healthiest person I’ve seen all day. Just exercise a little more.” But I noticed that even though I exercised several times a week, I was getting weaker, not improving.
I started doing research. I found out that headaches are a part of kidney disease. I also found out that I shouldn’t take ibuprofen for them. No one had ever told me that. I found that out on my own. When I asked my nephrologist about my headaches, he said “how much pain medication are you taking a day?” Well, its really more like every couple of weeks, I explained. “Oh, then you are fine,” he said. When I asked him if I shouldn’t take ibuprofen he said, “probably not.”
I was also reading up on diet. I should eat limited protein. I should actually stay away from things like whole grains, brown rice, etc. I found this confusing because it bucked conventional wisdom. I asked my doctor about it. He acted like it was a bunch of hogwash. You are fine! You are healthy. Don’t worry about diet! None of that really works anyway.
So, I asked him for a referral to a renal dietician and he said “we have one in the office.” and made an appointment. When I got there, she said that she was a registered dietician, but that she worked there as a social worker helping people get ready for dialysis and transplants. I asked her to give me diet advice anyway and she went over my food and said my diet was fine. She also blew me away and said, “Do you want to talk about transplant now?”
“…but, I don’t qualify for one, I’m not sick enough?” I stuttered.
No! you have a GFR (glomular filtration rate, an estimation of percentage of kidney function) of 19! You qualify! She said as if I won a prize. But, I argued, my nephrologist says that number is wrong. He says it is meaningless and that it doesn’t take into account my weight and height and my kidney function is much higher than that. Hmmmm, she said. Well, I will just tell you about kidney transplant so you can have it when you are ready. “Ok,: I said brightly, “but he says I wont need it until I’m like 70 or 80.”
“Hmmmm,” She said.
Looking back, there were many other warning signs that I was sicker than I was being told. The one time I had a kind of dramatic kidney function drop, I found out years later when a chart of my functioning was explained to me. When I asked when the drop was, it was when I had been very sick with strep and had been on antibiotics for several weeks. No one ever told me antibiotics might be dangerous for my kidneys. But another time, when I was in the ER for a Urinary tract infection, I was prescribed antibiotics by my nephrologist late at night. The next morning, the pharmacist called me and said to stop taking the antibiotics prescribed to me by my nephrologist because they were bad for my kidneys. Another nephrologist on call had changed my dose. Or there was the whole, “do I or don’t I have Alport’s syndrome?” issue. My nephrologist said I couldn’t have it because women who have it don’t have the severity of blindness and kidney failure that I do. When I later found it on my record as my diagnoses and asked about it, my doctor mumbled, “I guess women in some cases can have these symptoms.” What changed? (I am now in the middle of doing genetic testing to get a diagnosis. The working theory right now is that I have Alport’s AND Retinitis Pigmentosa, which would explain why my vision is worse than most with the disease.)
I do think that I quite enjoyed his positive outlook to my kidney disease. When getting conflicting information, I tend, like many people, to veer towards the information I like to hear best. I liked that he told me I was the healthiest person he saw all day. I liked that I would build up this stress about my health and then in one 20 minute visit, he would dispel it.
This is why, in this case, I waited probably too long to see the reality of what Dr. Google was telling me. I knew. I knew I was getting sicker and that my kidneys were failing. I knew but I let myself believe what my cheery and friendly doctor — who was overly optimistic or maybe overly biased to my youth and able functioning or maybe overly biased towards my cute guide dog and kids — had to say. In this case, hands down, Dr. Google was right, my doctor was wrong.
As I became sicker to the point where my lack of energy became its own disability that I and my family had to accommodate, the reality of my situation started creeping in. The visit to the social worker was the first wake up call. I was shocked that I could qualify for a transplant. She also told me to “start talking about this to other people” which I hadn’t so much. And when I started talking to other people, I found that my experience, with an optimistic, take no action doctor was pretty typical.
I joined an online kidney failure support group. Here ideas were exchanged, research articles were passed and experiences were shared. I found that unless kidney disease came on really suddenly, almost everyone with a chronic kidney disease like I had was basically gaslighted about their illness. There was a sort of generational trend here. Old timer doctors were more likely to be like, “There is nothing that can be done until kidney failure so no need to stress out the patient and subject them to special diets or medications. They can just live it up till they can’t anymore.”
A younger set of nephrologists were more likely to empower patients by keeping them fully informed about medications, treatments and diets that could slow the progression of their disease. This group of patients touted the wonders of a low protein, non-processed, plant based diet, filtered water, exercise, ACE inhibitors and other experimental drugs. They were told way early to try for a living donor transplant when they were much higher up on the GFR scale (like 25 instead of 15 or 5.) They were taken seriously when they talked of headaches, pain and low energy. (A common refrain for those in the other camp who complained of kidney pain was when nephrologists said kidneys have no pain receptors so they can’t be having kidney pain. Maybe its phantom or surrounding pain, but I am here to tell you, kidney pain exists.)
When I researched and then slowly changed my diet to their suggestions, I noticed almost instant improvement. It wasn’t a cure, but it made it so I had many more good days than bad, and many more days where I was up and around accomplishing a few tasks a day instead of lying in bed wasting away. It made a huge difference in my day to day quality of life. Think of all the days I could have possibly had back had I only known about this 15 or 20 years ago, when I first asked about diet.
But it was too late for my kidneys. A few months after the social worker visit, my doctor told me he was retiring, but later I was told he went to manage a dialysis clinic. There is evidence that for-profit dialysis clinics dissuade patients from getting educated about transplants and preventative care for their kidney disease so they will increase their chances of going on dialysis. I have no evidence that this is what my nephrologist was doing to me, I’d like to think he was just too overly positive and didn’t want to stress me out. This would make him patronizing and custodial, but not evil. To withhold accurate medical information from patients so dialysis clinics can make a profit is just fucking evil, and I guess I’m not ready to accept that is what happened to me.
When he moved on, I was moved to a new younger nephrologist. And this is where things got real. “Now tell me why haven’t you moved on transplant” was literally the very first things she said to me after “Nice to meet you.” I had been going to Dr. Google and Dr. Facebook enough by this time that I was not shocked that it was coming, but I still wanted to triangulate. I now trusted no one. My GFR was now 15. At my last visit with my nephrologist, not 6 months before this and just a couple of months after seeing the social worker, he told me that despite what the blood work showed, my actual GFR of maybe 25–30 and I was looking at decades. So, I asked her if we could do the more complicated test that would allow me to get a more exact GFR, not just the estimation that doesn’t take into account my height and weight.
My estimated GFR was 15. My actaul GFR was 15. I was referred to transplant that day. We discussed dialysis options and formulated a strategy should my kidneys fail before I could get a transplant. Reality was here.
You can say I just had a negligent doctor, but there are lots of other ways this type of thing has happened that affected my life. For example, I have my third child — my bonus baby — because no one told me that birth control pills may not be as effective in people with kidney disease. This information is readily available on Dr. Google, but I didn’t research till after the fact, and then triangulated it with other medical professionals. (hence revisiting Dr. Fuchs at Planned Parenthood.) Because I didn’t think to research this beforehand, I had an unplanned high risk pregnancy at 39 years old while my husband was out of the country. It ended up working out ok for me, but for someone else, this could be devastatingly tragic.
I may have been able to put off my kidney failure by years, or I may have lost my kidneys exactly the same way as I did now. But I could have been informed, and I could have planned for it. My older kids are nearing college, my husband and I have a business we had plans for. We had travel plans and life plans that all came to a grinding halt. I am now dealing with stage V kidney failure in the middle of a pandemic when I could have started the transplant process (and got on the all important waiting list) years ago. Even if my kidneys were to fail anyway, I would have been more prepared, more mentally ready. More empowered.
Doctors can be essential, wonderful allies in health. They also have egos, are human, are subject to limited knowledge, bad days, and politics. And did I mention egos? When you look back at my story, you see there were several medical professionals who seem to have concerns about my nephrologist but didn’t want to step on his toes and contradict him. This is a problem. What was also a problem over the years is what I call, acute acuticitus. Doctors are very good at looking at one isolated problem at a time and stablizing acute crises. They are not the best at dealing with long-term, comprehensive co-existing issues. For example, when I complained about lack of energy and not getting things done, I got told that other patients my age could hold down maybe not a manual labor job, but full time office jobs. Great for them, I said. But did they have to walk and ride public transit miles a day while carrying several pounds of adaptive equipment and compensate all day long with a vision and hearing impairment? My deafblindness and lack of ability to drive affects me as a kidney patient in different ways than other people. “I never thought of that,” he said. Often, the only person who can see the whole big picture of your life and how things interact together is you.
I do think most medical professionals mean well and do the best they can, but I also know they are fallible and deal with multiple distractions and stressors. Certainly doctors should be respected. But I also know this. No one is going to care or be on top of your health as much as you. You will always need to advocate for yourself and to do that, you need to know and understand everything you can about your health. Dr. Google, when used wisely, is a very necessary tool for triangulation and to find out different options. Be discerning and smart about using Dr. Google. Be discerning and smart about using Dr. Real Life. But don’t turn over your health in its entirety to just one person. Your doctor should be your respected ally, one of your main sources of information, but not your only authority. You are your best self advocate when it comes to your health.