by Carolyn Thomas ♥ @HeartSisters
As a person who lives with and writes about coronary microvascular disease (MVD), I feel lucky that my family doctor, my cardiologist and my pain specialist are all believers. It’s like the trifecta of diagnostic wins for a heart patient! I say that because one of my blog readers, after asking her physician if her puzzling cardiac symptoms might be due to MVD, was told:
“I don’t believe in coronary microvascular disease.”
I guess it’s time to remind such physicians that we’re not talking about Santa Claus or the Tooth Fairy here.
We’re talking about a very real cardiac condition, researched-peer-reviewed-and-published-in-medical-journals real. Not only did my own cardiologist refer me immediately to a pain specialist at our hospital’s Regional Pain Clinic after my correct diagnosis, but he turned out to be a pain specialist who had completed a fellowship in Sweden studying the debilitating refractory angina caused by MVD.* Another win for heart patients!
I don’t feel lucky to live with this diagnosis, but I’m damned lucky not to have to rely on physicians like the non-believer that my ill-fated blog reader had. What would I be doing now, how would I cope, how could I live if my own well-informed cardiologist hadn’t correctly diagnosed me with MVD a year after my 2008 heart attack? For too many female heart patients, however, ending up with physicians who are as knowledgeable as mine sometimes appears to be a crapshoot.
So much of diagnostic medicine in general, as I’ve observed frequently, is simply trying to figure out what the problem is NOT.
A study published in the American Journal of Medicine reported that the role of diagnostician remains one of the most challenging roles of any physician.(1) Researchers estimated that physicians carry two million facts in their heads just to fulfill this unique role.
And with medical knowledge expanding rapidly while also becoming increasingly specialized, and with 13,000 known medical conditions, no individual doctor can be an expert in all conditions across all specialties based on academic training alone.
If they aren’t willing to acknowledge this reality – if they continue to believe they’re correct simply by virtue of the letters M.D. after their names as my blog reader’s doctor was – here’s what can happen, according to Dr. Jerome Groopman in his excellent book How Doctors Think. He warns:
“Specialists in particular are known to demonstrate unwarranted clinical certainty. They have trained for so long that they begin too easily to rely on their vast knowledge and overlook the variability in human biology.”
It may surprise such physicians to learn that patients who live with rare or chronic illness often report that they know far more about their condition than their doctors do. It’s what’s called having “skin in the game.”
When my friend Gail was diagnosed with Stevens Johnson Syndrome (SJS) – a rare and horrific drug toxicity reaction to a commonly prescribed medication – she learned, for example, that not one of the physicians in her hospital had ever actually seen an SJS survivor in the flesh. It is so rare that it took three days and many wrong guesses to finally come up with an accurate diagnosis. Before that day, I watched one of the docs who saw her in Emergency explaining to the small gaggle of med students trailing behind him that what Gail had was Bell’s Palsy. (Note: I’m not a doctor, but even I knew this was no Bell’s Palsy!)
Gail ultimately had a steady parade of physician and student visitors during her 5 1/2 week hospital stay, as word spread throughout the hospital that a real live SJS patient was in the house. Gail survived, but she is now permanently blind.
And it’s fair to say that after years of living with and learning about the resulting aftermath of this condition (even traveling from the west coast to Boston to consult world experts in SJS there), Gail likely now knows far more about SJS than any physician possibly could.
But this level of awareness isn’t limited to extremely rare diseases. Consider Annette McKinnon. She is a Toronto blogger and patient activist who lives with two debilitating chronic conditions: rheumatoid arthritis and an immune system disorder called Sjogren’s Syndrome. Annette mused recently on Twitter:
“I am aware of more than my doctor sometimes, especially in my disease area. It matters more to me.”
In one of the most interesting studies on what it’s like for patients who know more than their physicians, people living with Type 1 diabetes were interviewed about their experiences after completing comprehensive patient education courses.(2)
But researchers, led by the late Dr. Rosamund Snow at King’s College London, found surprising pushback from the physicians of these educated patients in reaction to their increased knowledge of diabetes:
“Both post-course and several years later, most participants spoke of the experience of taking part in this education as life-changingly positive. It helped them understand how to gain control over a very complex disease and freed them from dependence on medical advice and restrictive regimes.
“However, interactions within the health system following patient education could be fraught.
“Participants emerged from the course with greater condition-specific knowledge than many of the health care professionals they encountered.
“When these professionals did not understand what their patients were trying to do and were uncomfortable trusting their expertise, there could be serious consequences for these patients’ ability to continue effective self-management.”
So this is actually a good news/bad news story.
The good news: taking a useful patient education training program is “life-changingly positive”.
The bad news: the same condition-specific training, warned Dr. Snow, can bring “expertise taught to patients in one branch of medicine that can be considered non-compliant by those who are not specialists in that field.”
For example, Dr. Snow’s study concluded:
“Patients who have in-depth knowledge of their condition encounter problems when their expertise is seen as inappropriate in standard healthcare interactions.
“Although patient education can give people confidence in their own self-management skills, it cannot solve the power imbalance that remains when a generalist healthcare professional, however well-meaning, blocks access to medication and supplies needed to manage chronic diseases successfully.”
The participants in Dr. Snow’s study already had a well-recognized diagnosis (Type 1 diabetes) that is covered in all med school training – yet these educated patients still knew significantly more about the disease than their primary care physicians did. They had their own day-to-day lived experience of their diagnoses for several years, plus their additional specialized clinical training.
But they faced lack of support from physicians who felt threatened or undermined by such well-educated patients.
Just imagine being a patient living with a cardiac diagnosis that many physicians are not familiar with (like coronary microvascular disease, for example – or like Spontaneous Coronary Artery Dissection – SCAD).
That’s what happened to Katherine Leon. At just 38 years of age, she had a heart attack following the birth of her second child, caused by SCAD.
But it took six full days of being repeatedly told “It’s not your heart!” – until she finally underwent cardiac catheterization and emergency double bypass surgery.
Having survived what most doctors believed at the time was a rare and usually fatal heart condition, she went on to learn as much as she could about this diagnosis. She was even instrumental, along with SCAD survivor Laura Haywood-Corey, in convincing Mayo Clinic cardiologist Dr. Sharonne Hayes (the founder of the Mayo Women’s Heart Clinic) to undertake groundbreaking SCAD research. Those studies suggested for the first time that SCAD isn’t rare after all – it’s just rarely correctly diagnosed. (Read more of this amazing story as reported in The Wall Street Journal).
Six years of tenacious digging and researching her own diagnosis (including important input from dozens of other SCAD survivors she found on WomenHeart’s online support community) gave Katherine a degree of expertise in this often-misunderstood diagnosis well beyond that of any physician who has little experience working with SCAD survivors (i.e. most of them).
How did her journey from patient to expert begin? In her own words:
“The process started as one furiously angry Momma who wasn’t going to take, ‘Get over it!’ for an answer one minute longer.”
Katherine’s comment reminds me of a further impossible dilemma facing patients who might be more knowledgeable than their physicians about their specific condition: how do you communicate informed opinions to doctors in a way that won’t get you labelled a “difficult patient“?
Despite this very real possibility, I encourage all patients to become as informed as possible about their own diagnosis, and to work in partnership with a physician they can trust. There is simply no excuse for not educating yourself about your health.
What I now tell the heart patients on my blog and in my presentation audiences is that now is the time to become the world experts on their own particular diagnosis. Or, as another of my readers once spelled out succinctly to her own physician:
“This is your career – but it’s my life!”
Katherine Leon is a good example of such an expert, and she is blunt in her assessment that motivated patients are indeed capable of understanding complex medical information when it affects their own lives, as she explained:
“The whole idea that patients are stupid is half the hurdle. Just because you are sick, doesn’t mean you aren’t intelligent or your brain doesn’t function!
“I can Google, read professional journals, and ask questions of the experts.”
And so can you.
NOTE FROM CAROLYN: I was terribly saddened to learn that last month, Dr. Rosamund Snow died suddenly by suicide. I first met her online when she contacted me in her role as Patient Editor at the British Medical Journal (BMJ). This brilliant, funny and fierce champion for the patient voice in her journal had, according to her husband Stephen, suffered from depression for some time. Rosamund was instrumental in helping me with all of my essays published in the BMJ. I first wrote about her research paper called “When Patients Know More Than Their Doctors? here in 2015. Rest in peace, dear Rosamund. . .
ANOTHER NOTE FROM CAROLYN: I wrote much more about the cardiology gender gap in my book, “A Woman’s Guide to Living with Heart Disease” . You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use the code HTWN to save 20% off the list price).
* Refractory angina is a form of chronic coronary artery disease for which both conventional medication therapies and revascularization procedures are ineffective. Patients typically experience debilitating daily symptoms of chest pain, shortness of breath, and crushing fatigue.
(1) Pauker SG, Gorry GA, Kassirer JP, Schwartz WB. Towards the simulation of clinical cognition taking a present illness by computer. Am J Med 1976;60:981-96.
(2) Snow, R. et al. What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study. BMJ Open 2013; 3:e003583
Q: What has helped you to become an expert in your own diagnosis?
When you fear being labelled a “difficult” patient
When doctors can’t say: “I don’t know”
A second opinion from Dr. Google
Your health care decisions: don’t worry your pretty little head over them
Patient bloggers at health conferences: ‘real’ journalists?
Doctors who aren’t afraid of “Medical Googlers”
Your health care decisions: don’t worry your pretty little head over them
21 thoughts on “My medical diagnosis means more to me than to you”
I’m so sorry your friend Dr. Rosamund Snow, who was such a wonderful help to you with your essays, took her life. It is like an earthquake learning of someone’s suicide – at least for me it is. Such a potent reminder that we never know someone’s “inner life” . . . often times not even our own unconscious motivators. Very sad – she sounded like a remarkable woman.
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Thanks so much for your comment, Judy-Judith. You are so right – it did feel like an earthquake hearing the news of Rosamund’s death. I then felt doubly shocked by my own reaction. After all, I’d never met her in person, and our contact over the years had been only via social media, email and this blog, but when I read the email announcement from the BMJ the morning after she died, I cried for the whole day! I just felt inconsolably griefstricken over the loss of this wonderful person, who despite her reputation, her successes and the esteem of her colleagues had ultimately decided that suicide was her only option… It was and still is very sad.
So thankful for your blog Carolyn Thomas! Heart Sisters is so important! I share your blog address all the time – even with women I don’t know – but because I know that women need good doctors and someone who understands that it’s not all just in their ‘head’
So thank you and keep on doing what you’re doing.
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So glad I just found this blog, and am planning to read a lot of your posts.
I’m 67, and suddenly became a ‘cardiac patient’ with a two-week horror of chest pain, three catheterizations, a nuclear stress test, and them not finding the right place to stent until the last time, followed by blowing the closed hole. First cath – they send me home, tell me it’s not cardiac! (details on my blog liebjabberings.wordpress.com). I now have three stents, and a balloon angioplasty to my credit.
Anyway, I warned them from the very fist cardiac visit (my doctor thought she heard a murmur, sent me to get checked out) that, since I have CFS, I overreact to every medicine I’m ever given, usually cannot reach a therapeutic dose, and have quit almost everything I’ve ever tried. I take Celebrex – the only thing in 27+ years that has ever helped the pain.
They load me up with all the standard stuff. I get about half the side effects on the lists. I get off the stuff, retaining only the Effient+baby aspirin which is supposed to keep the stents open. They lied to me about so many things in the hospital I’m still amazed I held still for the third cath – and I’m still not sure they’ve gotten everything (but chest pain is gone – hurrah!).
I have read 100+ papers on all this stuff – beta blockers, calcium-channel blockers, statins – I won’t be taking ANY of them. Off over two weeks now – all the side effects are gone except, right, the ones left from the Effient. I’m trying to stay on the stuff – while reading the horrible papers on dual anti-platelet therapy. Bad medicine, bad experimental design (I’m a physicist, or was), bad statistics, ‘blame and ignore the patient’ attitudes… If I were 75 they wouldn’t even recommend the stuff!
Shutting up – but expect to read lots here. I like your educating yourself, and your attitudes, and success with doctors. I’m so used to the bad ones because half of doctors will tell you they know nothing about or don’t believe in CFS.
I’d rather not die of something preventable, but my quality of life has decreased to close to zero now (I write fiction, and I can’t focus enough to do that) – and all I had left was writing, so the depression is hitting pretty bad. Looking forward to wisdom from your posts and commenters.
So much is going on for you, Alicia. It’s overwhelming to try to make sense out of what makes so little sense, especially at the beginning. Your chest pain is gone, in most heart patients’ experience that’s a major improvement that should put your mind at ease that they did indeed get ‘everything’. Patients make decisions based on all kinds of factors every day, but although it’s tempting to chuck all the meds you’ve been prescribed based on your prior experience with drugs, I’d be careful about even thinking of stopping your anti-platelets at this point if I were in your shoes. Talk to your doctor about options. Believe me, you really DON’T want restenosis in those three stents. We know that’s what used to happen with alarming (and often deadly) frequency before DAPT became part of standard post-stent guidelines. Keep on educating yourself and best of luck to you.
I am NOT stopping the Effient without the doctor’s permission, but it’s getting close – I haven’t had a brain in so long, nor any energy.
We had a big snowstorm here on the East Coast; I left a message.
It’s getting harder and harder to force myself to swallow that pill every night.
I read papers – I want THEM to PROVE to me I need to take the stuff. that’s informed consent. What they’ve gotten from me so far is not.
I’d ask to be switched to Plavix, but it has a bunch of gastric side effects I’m pretty sure would get me.
I’m trying to be prudent – without the capacity to make good decisions, because I have no mind. Lovely Catch-22, isn’t it? Sigh.
The first time I experienced any chest pain was driving home from work one evening. My car was a stick shift and I remember thinking that at least I didn’t have a problem with changing gears because the pain was going down my left arm, not the right one. As soon as that thought came to me, I immediately realized that I could be in trouble. I went into an ER near my home, was examined, and sent home.
When I got to work the next morning, I learned that three other crew people had had the same symptoms as mine, but they had all been hospitalized overnight. All of them were men. We got together and figured it must have been an environmental cause.
Things were fine for a few years, but then the chest discomfort returned along with abnormal EKGs. My primary care doctor found an excellent cardiologist for me. My first stress test was halted abruptly and the cardio was on the phone to my PCP discussing options. He did a left heart cath. I wondered why it wasn’t whole heart and he said that pain doesn’t come from the right side of the heart…hmmm…lots of no diagnoses.
My PCP is a man who loves a mystery. If he can’t find an answer, he doesn’t think you’re a bad patient, he just thinks he must be looking in the wrong place. That may be because he is both an internist and an endocrinologist. I think endocrinologists tend to look at the body as a whole, and how all of the parts work together.
My PCP was the first to suggest MVD or as he called it then, Syndrome X, Cardiac. When he figured it out, during an office visit, he went into his office and called the cardio immediately and suggested that he might look in that direction.
The cardio looked everywhere but that direction. Finally, I called my PCP and told him I really didn’t know what was going on between them, but I was caught in the middle and my health care was suffering as a result. My PCP said nothing was going on, but perhaps the cardio was a little out of joint because he had suggested a diagnosis. After all, the cardio had years of additional training and he was just an internist. He would call and make sure all was well. Two days later my PCP called me back and told me he had arranged for me to see the head of the cardiology dept at USC.
Half of my visits were with that Dr. and half with his associate. The head doctor lectured all over the world, so he wasn’t always in town should an emergency arise. I was comfortable with both of them, and they had no problem with the MVD diagnosis. They explained that there really was no definitive test for it, rather it was a matter of elimination of everything else that it could possibly be.
They told me that there was a study being done at NIH in Bethesda and I would be a good candidate for participation in the study. They had already talked with the doctor in charge of the study, who was interested in me, and gave me his phone number to set up an appointment.
So I found myself on a non stop flight from LA to Washington DC and began having chest pain that was unrelieved by nitroglycerin. The pilot was talking to my doctor, and the flight attendant came back with a list of airports where they could land. Lubbock, Amarillo, Dallas. I was pretty sure that I’d have a hard time getting out of Lubbock or Amarillo, never mind the state of hospital care in small towns, so I opted for Dallas. An ambulance met us on the tarmac and took me to Baylor Hospital. The cardiologist in the ER was one of those who didn’t believe that women have heart problems. He was snide and snooty, and finally asked “Well, do you even HAVE a cardiologist?” I said yes and he asked his name. When I told him, his attitude immediately did a 180. My guy who lectures all over the world apparently has quite the reputation. The Baylor doc was suddenly falling all over himself to treat me well.
An overnight stay and I was released early afternoon. I found out the next flight to D.C. And then called the local American Airlines office and explained that I was their passenger that had been taken off the non stop cross country flight to a hospital in Dallas yesterday. I had found that I could continue my flight on the next plane to leave for Washington, so what time would they be picking me up? I’ve always found it’s easier to get what you want by phrasing questions as though you expect them to do what you want. If I’d asked if they would pick me up, the answer probably would have been no, but by assuming they would, and asking what time, it makes it harder for them to say they wouldn’t come and get me at the hospital. Her response was a very unsure, very tentative “…Uh….wait a minute…” and then she returned with a time for me! I made sure I was ready and waiting.
Back home, the associate didn’t have his contract with USC renewed because “he spent too much time with patients.” What was wrong with that picture? Since he didn’t travel, I decided to stay with him for my cardiac care. I was very happy with my treatment, but his office was more than an hour away. That meant I saw a stranger if I had an emergency situation.
After a few years, I started a cardiac rehab program. It was an eight week program that took me ten months to complete. Whenever your heart monitor shows significant changes that continue after stopping the activity that caused the problem, you end up taking that wheel chair ride across the parking lot with one of the cardiac rehab nurses. Then you have to get a note from your cardio to come back.
On one of my several trips to the ER from rehab, the ER doc asked the nurse why she bothered bringing me over? (She always brought the printed strip from the rehab monitor). He said my EKGs always looked the same, so obviously, that was a normal reading for me. I thought she was going to rip his throat out. She said did it ever occur to you that she only comes in when she’s in distress, and those identical printouts are what her EKGs look like when there is a problem? He just turned and walked away.
My advice to everyone, no matter what your cardiac problem may be: get a color copy of your normal or baseline EKG. Reduce it to about 31-32%, still in color, trim it, and then laminate it. Trim that one (round the corners) to fit in your wallet. You can make a second one, punch a hole in one corner, and put it on your key chain. If you’re traveling, you always have a copy of your baseline EKG for medical personnel to compare. It enlarges beautifully on any copier, and most cardiologists don’t even have to enlarge it to read it. Make sure you get a new one (the EKG machine dates it) every six months or so.
Then we moved to Minneapolis for 10 months and the University Hospital there was studying MVD and had developed a Doppler flow test for it. I tested positive. YEA! After more than 15 years, a definite diagnosis.
After we moved to a small town in AZ my cardiologist had retired there after teaching cardio at San Francisco State. His idea of relaxation was reading medical journals. He was the first to diagnose obstructive hypertrophic cardiomyopathy. Oh, goody! Another orphan condition. Now I get to deal with not one thing that no one ever heard of, but two. He was surprised that no one had told me about it before. He thought it was pretty obvious.
One of the ways to diagnose is with a Valsalva maneuver.* It increases the obstruction, so the gradient increases, and the murmur becomes significantly louder. My cardio used to have medical students with him for two week periods. He loved it when I had an appointment during this time because his students could hear the difference. (He was more than 100 miles from the medical school, and the students used to tell me they would fight to be selected to come up and have the opportunity to learn from him.)
My obstruction began getting worse toward the end of our ten+ years there, and my cardio talked to me about the possibility of an ablation. He explained the procedure to me, but said that he would not do it.
After moving, our new PCP doc found a local cardio that specialized in HOCM (hypertrophic obstructive cardiomyopathy). He had studied at Michigan where they specialized in that. Our PCP was leaving the group she was in and going to be a company doctor, so no more private patients. On our last visit she told me she could hear my murmur (it used to come and go). I asked her if she really wanted to hear it. She looked puzzled and said okay. I did Valsalva for her and she actually jumped! Her eyes got big and she said we learn about these in med school, but you never actually get to hear one!
So, shortly after my new cardio, I started going downhill fast. I had also learned that HOCM is the gateway to Congestive Heart Failure (CHF). At times my gradient was up to 90. As it was described to me, when blood flows through the mitral valve into the atrium, that’s the gradient. It’s like a garden hose with no nozzle…it flows. When there’s an obstruction to the mitral valve, it’s like putting your thumb over the end of the garden hose. The water comes out with a lot more force, and that force can eventually stretch the atrium, leading to atrial fib and CHF, among other things.
First the ICD/pacemaker, then about six weeks for the wires to set, and then the ablation. There are two ways to repair this problem. The old way is true open heart surgery. Cardiac surgeons cut open your heart and remove part of your septum so that the mitral valve isn’t blocked any more. It’s a complicated surgery, and the recovery is very long.
The newer method can be easier on the patient…if it’s done correctly. First, like all surgeries, you want someone experienced. Both my cardio and my electrophysiologist told me that the surgeon they had selected for me had done more of these than anyone in the world. Even if they exaggerated, it still means he’s done a heck of a lot of them.
The surgeon goes in through the groin, like a cath (but for this, you’re totally out). Then ethanol alcohol is injected into your septum to kill part of the septum. Basically, they give you a heart attack while you’re on the table. Here’s where the skill comes in. After the injection, the septum continues to shrink. It reaches its final state after six weeks. Inject too little and the obstruction remains; inject too much and the septum becomes too thin to work properly and you can develop heart failure from your heart overworking.
It is amazing how much better you feel immediately afterward. The schedule is four days in CCU and then a few days in the telemetry unit. I went straight home from CCU. They don’t know how to release people there. They never get to do that.
Now, my echoes look like my septum was reduced by the open heart method. It’s very precise. Pretty much everything else is under control, so it’s time to get back to treating the MVD.
I try to be cautious when I’m some place unfamiliar. A new ER clearly doesn’t know anywhere as much as I do about my body…I live here. I know when it’s not working correctly. I don’t say much unless asked, or if I hear something totally off base. Usually that starts with nitroglycerin. It’s contraindicated for HOCM. The next question is usually what is HOCM? Then the dialogue begins. At some point I’ll be asked if I work in the medical field, and I just say that when you have an orphan condition, you really have to be proactive about your own health care.
* NOTE TO READERS: The Valsalva maneuver is performed by attempting to forcibly exhale while closing your mouth, pinching your nose shut while pressing out as if blowing up a balloon.
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Tommie, I must tell you that when I first scanned your comment and saw how long it was, my first impulse was to start editing it for space. But I quickly realized that I was hanging on every word as your story unfolded! So fabulous that your astute PCP was the one to correctly identify MVD. Personally, I’ve always hated that old Syndrome X name, which somehow suggests that it’s a made-up condition that doesn’t even deserve its own name! Love your description of your retired AZ cardio whose “idea of relaxation was reading medical journals!”
It must have been deliciously satisfying to be able to tell that “snide and snooty” cardiologist who met you at Baylor that yes, you DO actually have a cardiologist, and he’s a pretty darned famous one at that. But what if he hadn’t been famous? What if your cardio had been, just like the vast majority of our docs, a regular, hard-working and smart cardiologist whom the snooty guy hadn’t ever heard of? Good grief, you could have been booted right out that ER door that very day.
You’re right on the money when you say that patients with orphan (rare) diseases need to be pro-active. It’s truly a matter of life and death… Thanks so much for sharing your very complex health story here. Best of luck to you in managing your MVD.
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Thank you Carolyn. I looked at it myself when I had finished writing and thought this will never get printed, but I couldn’t condense thirty years of health care any more than I already had done.
You are so right, it does seem that the stars were aligned when I really needed them, but there were a lot of road blocks, too.
The best advice I can give anyone is to try and have a sense of humor. Difficult when you really don’t feel like it, but it will lift your spirits, too. I’ve had six, maybe seven angiograms. After the fifth, if one was suggested I would say that they told me after five, the next one was free.
As for the ablation, I found the person in the OR who would likely have the least to do if there was a problem during the procedure. I think it was the anesthesiologist since he was near my head. I told him he had one more very important job…if there was a problem, he was to lean down and say into my ear “Do not go toward the light” as many times as necessary.
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I love how you think, girl! You reminded me that we can joke about the fifth angio, but not about our first. We become different people than we were back then when we were terrified. It’s not that the 5th or the 7th is less scary, but we have by then had the lived experience of knowing that, so far, we aren’t actually dead yet in spite of those early fears…
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Back in 1981, when I had my first serious run-in with heart disease, it seemed to me that my doctor was not giving me the full information I wanted, so I hit the library. I read every bit of literature I could get my hands on and learned quite a bit — enough to make my then-doctor angry with my questions.
In 2010, when I was finally diagnosed with Coronary Microvascular Disease (MVD), again I went searching for info. Fortunately, the Internet was available, and now so is your wonderful blog. I’m also now in the care of a wonderful PCP and a triple-A-rated cardiologist, both of whom think my questing after more info is terrific.
I figure that from the neck down, I’m my own lab rat, and I want to know as much as possible about every facet of this disease. Yes, I’m insatiably curious, but I know from bad experiences — both my own and friends’ — that a patient without knowledge is far more at risk than is the savvy patient.
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Sandra, I love the image of you in the library back in 1981 poring over hard-copy journals and books in your search for more information (“enough to make my then-doctor angry with my questions!”) In those pre-internet days, it must have taken you hours and hours to do this! Your statement reminded me that I knew I’d made an ER doc angry (the one who misdiagnosed me in mid-heart attack with acid reflux) when the ER nurse came back into my little cubicle and warned me sternly that I’d have to stop asking questions of the doctor: “He’s a very good doctor and he does NOT like to be questioned!” (The question I’d dared to ask? “But doc, what about this pain down my left arm?”)
I could kiss your PCP and that “triple-A-rated cardiologist” who both think your questing after more info is terrific. YES! If only all physicians felt that way.
Finally, I’m going to go embroider your conclusion “From the neck down, I’m my own lab rat” on a pillow… Thanks very much, Sandra – so well said!
In my case, curiosity didn’t kill the cat, it turned her from a tabby to a tiger :))
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Sandra, I always tell my doctors that the internet in the hands of an amateur can be a dangerous thing.
That said, I try to limit my research to NIH, Mayo Clinic, Cleveland Clinic, and a medical school or two with good reputations. They all approve. They don’t seem to be fond of Wikileaks, WebMD, and other similar sites.
A series of articles appeared as an investigative report from the Seattle Times. The op-ed from the mother says it all.
Sadly, the patient is often too weak/too ill to fight for themselves and doesn’t realize this is the time that they need a fighter in their corner who is gonna have their back when faced with hubris.
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You’re so right, Anne. Patients are often the least able to fight during a medical crisis. The truly horrific thing about that Seattle Times story was that Talia’s Dad is a physician, but even his informed warnings to the medical team were ignored. OH MY GOD! What a nightmare that entire family went through, e.g. “Although Talia was in respiratory distress from the time she awoke after surgery, not a single physician adjusted their hypothesis that Talia was a healthy 23-year-old who was just anxious… No physician examined Talia’s airway or her dislocated jaw in the hours leading up to her airway occlusion. Their hubris cost Talia her life.”
Senseless, unwarranted, arrogant malpractice at its most frightening…
After an overnight stay in the hospital for crushing chest pain where the EKG and echo turned up normal, I saw my cardiologist and asked her about MVD. She apparently belongs to that group of cardiologists who do not believe in that diagnosis. That was in December of 2015 and I haven’t seen her since. I went back to the cardiologist who (correctly) diagnosed me with Prinzmetal’s Angina (after a male cardiologist diagnosed me with anxiety). When I saw this cardiologist after another ER visit, where the ER physician treated me both for my heart and for an asthma attack (?), she told me to get a stress test. When I went, I was wheezing badly and I’m unable to have the test until my asthma is under control. Sometimes, I cannot tell whether I’m having an asthma attack or when it may be my heart.
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It’s tough to have duelling diagnoses, Gerri. Such a good point: sometimes, a person can present with more than one serious issue. At your stress test, you clearly demonstrated that it’s possible to have both. Best of luck to you…
You are indeed fortunate Carolyn. My diagnosis is straightforward, but the treatment options are widespread and in opposition many times with each other! Functional medicine has more and more to contribute every year. Integration of the two is somewhat self directed as the two knowledge bases don’t often play well together.
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Hi Lynn – thanks for that important perspective: even when a diagnosis is straightforward, there can be lots of controversy about appropriate treatment. Just yesterday, cardiologist Dr. John Mandrola wrote an alarming post concluding that treating atrial fibrillation with ablation is “overused, expensive, invasive and risky”. How is this revelation supposed to make countless heart patients feel who have been convinced by their cardiologists to undergo this procedure?