With All Due Respect ...

Don’t get me wrong. I absolutely and whole-heartedly respect the medical profession. Simply because I am convinced I would not be here today if it had not been for some incredibly talented, intelligent and ultimately extremely gutsy doctors, nurses, and pharmacists that took the time to learn and educate me about a rare disease that was only known in a few elite circles of the medical literati. I want to make this clear, before I go on my rant below ... 

But there are many times, a lot more than I would like to count, a lot more than I would expect as a patient struggling with a complex disease that cause more disease every year,  where I do have no choice but to not trust my medical professionals and it’s not because of me. It’s either because of their ignorance, unpreparedness, or because of the insane, profit-driven medical world of today that simply does not allow them to allot the proper amount of time for me, or to stay on top of their research to know what treatment they should have me follow. 

I landed on this article (https://www.nbcnews.com/tech/misinformation/doctors-say-medical-misinformation-gotten-worse-survey-finds-rcna225804)  a few months ago and I knew I was going to have something to say about it, but it didn’t come outta me until after a recent visit to my cardiologist and another one to my new vascular surgeon. 

The article talks about a survey that a nonprofit organization ran amongst doctors that found out things like “doctors said they encountered patients influenced by misinformation or disinformation a moderate amount or a great deal of the time over the past year”, and “doctors encounter pseudoscience in their everyday practice of medicine, and it indicates how their jobs are changing in response to a new information environment in which distorted health claims spread easily online”. It continues to state that due to the patients’ misinformation, the doctors feel that “it’s frustrating. It’s demoralizing, it cuts to the core of what motivates most physicians, and that’s a desire to help people in the most fundamental of ways. And in a way, it’s a repudiation of all the different things that lead people to practice medicine.”

Yet another doctor not related to the survey admits that “it’s too much to expect a physician or nurse practitioner, for example, to address complex, deep-seated beliefs in an eight-to-twelve minute consult”, and later admits that “sadly, sometimes our colleagues fall for the falsehoods, too”. This is all I will quote from the article. I am sure you can read it for yourself and form an opinion. 

Bluntly, this is what I would have to say, and I only speak from experience: doctors should not at all be surprised or feel “demoralized” or “frustrated” that people turn to social media or Google for medical information, because they cannot address all the patients’ concerns in the extremely limited amount of time offered to them for a consult by a system that enforces quantity over quality in the pursuit of the bigger profit. 

I have had cardiologists that admitted that they see 23 patients a day. In case you are doing math, this means about 20 minutes per patient, if the doctor takes no bio or lunch breaks, no breaks for meetings, email answering, or additional calls for referrals and additional consultation, during an 8 hour work day. This simply is not possible, in other words. 

I have a rare disease with an extremely complex set of diagnoses: I have homozygous FH, coronary artery disease, tachycardia, arrhythmia, atherosclerosis, a mechanical aortic valve, heart failure, diastolic dysfunction, carotid stenosis, mesenteric and celiac ischemia, fatty liver and gall bladder tumefactive sludge, just to list the main ones. There is no time in the whole 8-hour day for a doctor to advise me on my symptoms, my course of treatment, and my complications from all these. Not to mention there is not one specialist I need, but several.

I have no choice but to go to Google and ask about my concerns, or even the interactions between all my medications that the various specialists throw at me. 

To complicate the landscape, doctors are so incredibly specialized nowadays that they cannot see (or refuse to see to save time) what the other specialists do. They often operate in a complete void.

Very often in my career as a patient, I have found (from my own research) that a doctor would prescribe something that would either hurt another part of my body already affected by disease, or conflict with another medication that another specialist prescribed for another affliction. None of my doctors, even the good ones, look outside their own boxes. 

But what is worse, the one thing that made me go “oh, please, docs, cry me a river” when I read this article was something more severe and something that has been bugging me all my adult life. The one thing that makes me personally turn to online information (which I agree is not always reliable but it at least gives you the illusion that you get some answers) is the fact that I cannot find the answers in my own doctors’ offices. 

So, the doctors can say all they want (at least those surveyed) that they are  frustrated and demoralized because people walk in with bad information, but the truth is - we, the patients, sometimes have no choice. Last week, I walked into my cardiologists office and after the recent tests that he did - a holter monitor that I wore for 2 weeks, and a referral to a vascular surgeon that yielded results from an abdominal CT that showed a worsening of my mesenteric and celiac arteries, in addition to a history of worsening blood pressure and pulse measurements, worsening shortness of breath and angina - his question to me was: “All right, what kind of imaging tests are you interested in pursuing next?”. 

If I had not had 42 years of experience with medical professionals, I would have fallen out of my chair. But this was a too-common question that I have unfortunately heard from multiple physicians. 

I am not an ageist in the least - I have had young medical professionals that are up on the newest technologies which I can appreciate, and I have had older ones that have a more wholistic approach that I love, and are into the business of actually touching the patient to find symptoms and listen to the body (the heart, just like the lungs tells you things when you just listen to it; but few docs do it anymore). This particular cardiologist was an older gentleman, which might incline someone to think that in addition to many years of medical education he had experience on his side, so he should know the next steps for the course of my treatments. He deferred it to me. 

So, where is a patient in my case supposed to turn for answers? How am I supposed to know what imaging tests would be the most appropriate for a correct and reliable diagnosis? The only place I have is somewhere online and who can verify the accuracy of those results?

I deferred it to him by saying “the educated, wise kid in this room is you, doc, so I defer it to you to know what test to do next that would give you the most accurate picture of what is going on so we can come up with the best plan for treatment.” 

He decided against more tests and instead he did what many of my doctors do - threw more pills at the problems ... I’ll try them and see where this will lead ... We'll reconvene in May and reassess the symptoms and go from there. Maybe. If he remembers what my complaints were to begin with and what tests he has done so far. 

It’s all trial and error. Unless I stumble upon a thing online that might sound pertinent and then I am sure I can pitch it to him and he’ll order it ... reliable, accurate or not ... Maybe?! 

Days after this appointment, I met with the new vascular surgeon who had ordered a peripheral artery study (which always comes out perfectly fine and she should have seen the results of the previous one in my chart, because my cardiologist in the same practice did an identical one just 2 years ago and it came out perfectly normal, but people don’t read anymore, so we’re forced to repeat tests 10,000 times if needed - more inconvenience for us, more time off from our lives and more money for them) and an abdominal ultrasound - which, to my uneducated brain is a lesser-accuracy test to an abdominal CT with contrast that the same cardiologist in the same practice ordered only 5 months before. The results for the ultrasound were almost identical to the CT done 5 months prior, and they showed a worsening in my celiac and mesenteric stenoses and an increased post-stenosis dilation than the year before.

When I went in to meet my new vascular surgeon and go over the results, she acknowledged my disease but she brushed it off with the (in my humble opinion) ignorant statement of “well, yes, you have disease, you have HoFH, so this is expected, but I look at you and you look perfectly healthy. So there is no immediate action.” 

I just about came unglued, as I always do when I hear this statement because HoFH as well as many heart conditions are invisible, but history shows us, not any less deadly than many other extremely acute afflictions. And I told her with all the honesty, tact and well-managed frustration that I could muster: “This is where you lose me, doc! This is where I have to tell you: I do believe my disease is not unimportant or un-worrisome, just because I manage to look good. This is not a professional assessment, with all due respect.” 

And again: I know what I saw in the test findings. I know that things like “stenosis” and “dilation” are bad, in the context of atherosclerosis, arterial disease, stenoses, HoFH. And yes, I know this because I Googled it! And not only that - I know this because I saw what it did to many people in my own family who also “looked good”. They “looked good” until they had a stroke that left them physically changed, impaired or dead. 

But where do I find the correct interpretation of results? Who can please connect the dots between my constantly worsening symptoms and the findings in my new tests, when the doctor simply says “yep, tests  - bad; you - look good. Go home and live your life”?! Where can I find objectivity and education when the doctors blow me off?! 

Naturally, I turn online because that is a convenient resource that at least pretends to know it all! But where can we, the patients, find the authority who can parse through the information for us, and educate us not only about a disease in general but about our particular case of the disease, so we can feel like we have a handle on it and can live healthy and successful lives? 

And one more thing: I have had doctors, doctors with a reputation that preceded them, that have pulled up Google in their office with me present to see “what else they need to do next” for me. 

I am guessing with the explosion of AI nowadays, things will only get dire. I very often use Google primarily (which has always been “powered by AI” but now it needs to be branded this way) and quite often I am mindful of the findings. Because oftentimes, I have no choice. 

So, what gives, I ask you?! We insult them if we go online and come in with false information that our limited knowledge and desperation cannot parse through, but they insult us by dismissing our afflictions or deferring us to make decisions when they should be the ones with the knowledge?! 

What gives?! 

An Ultrasound and a Little FH Education

Happy New Year, everyone! 

I cannot believe I am starting my 15th year of blogging about FH. I started this to share my journey (the tests, the diagnoses, the ups and downs, the successes and the failures) with those people who might find out for the first time that they have FH. My commitment was that if even one person finds the information here useful, it is worth my time to share my stories. Over the years, I have heard from many folks that this has been so helpful to them, and that they either learned about a new way of managing their diagnosis, about a new test, or a new medicine, or that they just felt a little less alone. My job is done, really, but it is your merit as much as mine. Thank you. 

This is one of those stories - where I share yet another event from my everyday life and hope that you find it useful. I have an abdominal vascular ultrasound scheduled every year, to monitor the progress of my abdominal aortic ischemia - both my superior mesenteric and my celiac arteries in my abdomen have several stenoses where the blood flow is severely reduced. As of last year, one of the stenosis has developed a dilation which is (the way I look at it) a precursor to an aneurysm. We don’t want aneurysms on any blood vessels but especially not on any major artery branch, like the aorta, celiac or mesenteric arteries would be. I also have a narrowing in my abdominal aorta. 

A simple visual of where these arteries are located. The main trunk is the abdominal aorta.

This test is usually ordered by my cardiologist. I have seen vascular surgeons before, but since I changed my cardiologist in 2024, this new person decided it’s not bad enough for me to see a vascular surgeon yet, but that he is able to read the results and determine if one is needed at any point. Since my massive open-heart surgery in 2016, the sentiment of all the doctors that I have seen for my arterial disease has always been that “it’s bad, but not quite bad enough to do something.” The “something” would be a repair, or a stent, or a balloon, or a bypass of some description, for example. 

Last year, for the first time, they actually saw the dilation. I asked the cardiologist if this was not worsening badly enough that it would grant seeing a vascular specialist (usually a vascular surgeon). At the time of the appointment (in November 2025), he said “No. Not bad enough, but next year we’ll definitely see one if it looks any worse, even by a little.” All right. 

And then, about 2 days after that appointment, I got a call from his office that in fact, he does want me to meet with a vascular surgeon as soon as I can. All right. I totally agreed because in fact I had wanted this for years. So, long story short - I got an appointment with a vascular surgeon and she ordered an abdominal ultrasound which happened today. 

I just do as I am told, and got the ultrasound like a good little patient, but for years, I have done abdominal CTs for the abdominal ischemia. So, I was a little puzzled why they asked for the less in-depth, lesser-visibility test, but hey, I am no doctor. So, I went in. 

As she silently watched my messy mess of abdominal stenoses (I am sure!), the technician asked a lot of questions about why I was there, how come the doctor ordered this test and such. I explained to her about FH: your body’s genetic inability to process and eliminate surplus cholesterol. I also explained to her that it’s not from eating a bunch of burgers all day long, but it is just from this weird anomaly in your genes that you are born with. I mentioned that this is genetic and inherited from your parents. I explained about the more common version of this disease (the HeFH) when you inherit just one bad gene from one of your parents, and the less common one, when you inherit two bad genes from both of your parents, and I mentioned mine was the latter kind. This is why I have had the massive vascular problems since a very young age. 

She asked me if I had any history of vascular accidents in my family, any history of aneurysms myself, or any history of strokes and heart attacks. I told her yes on all accounts. Lots of examples. I also told her about dad’s peripheral artery disease and many strokes including the massive one in his brain stem which took him out at 70. 

She asked more questions. So, I said “I am guessing they did not teach you about FH in your medical education?” She said: “You know, you would think that someone would have taught me about a disease that causes this much vascular disease since I am a vascular disease tech imaging specialist. But no, this was never mentioned in my medical education.” 

She said the first time she ever heard about FH was from her boss who found out about it from her dad. Her boss’s dad had passed from complications from FH and he didn’t know he had it. Her boss (I am guessing she might be a doctor? But not sure?) finally understood why her cholesterol had been high all her life and now is on proper treatment for it and she is working with her kids and grandkids to diagnose and manage this disease better with fewer events than she had witnessed in her dad. 

Then, the technician shared that her own husband, his dad and his dad’s mother also have had high cholesterol and both heart disease and liver disease (fatty liver) and she wondered if this could be FH. She mentioned that they did go to the doctor with her husband’s cholesterol levels because they are high, but the doctor told him to watch his food and exercise more. She said as a family they all changed what they ate, and now they eat less fat, more lean meat, exercise more, and she cannot even think what else she could change, but her husband is not overweight and his numbers are not coming down at all. She asked me “could the cholesterol be high for a different reason other than FH?”  Again, she is asking me something her doctor should have told them already. 

I told her that I definitely don’t have a medical degree but in my knowledge of FH, high cholesterol levels that do not drop with lifestyle changes plus a family history of heart disease (or stroke) usually means FH. Which means her small children will need to also be considered having their levels checked and run by a specialist, just to make sure. 

She asked if the only way a positive FH diagnosis can be established is through a genetic test, and I told her that generally a genetic test would definitely confirm it, but that those two things alone (high levels and family history) should be enough to get medication to see if the levels could be controlled better. I told her about The Family Heart Foundation and how they have a wealth of information on their site (I encouraged her to just google them and find out more) about where to start and they should be able to answer a lot of her questions. She said she has a pediatrician appointment with a blood draw scheduled for her children soon and she will definitely ask them if they could add a cholesterol check to it. 

One thing I noticed just today, after half a million of these ultrasounds and CT scans (exaggeration here, as you can imagine): every single time I go in to have these tests, they always ask me whether I am there because I had an event (like a heart attack, stroke, or a burst aneurysm). And every time I tell them that I have had some of these events (heart surgery, heart attack, plenty of family history of all of these), but that the reason I am there is so that I can prevent an event. I am there to keep an eye on the vasculature so as not to allow (if I all can) for an aneurysm to burst or a heart attack to happen. Mostly, I get blank stares and absent nods. I have told new doctors before that my philosophy with managing my disease is to prevent the fire and not to put out the fire when it happens. Some people grimace and move on and I can see the puzzlement, but I keep pushing with every doctor and every appointment for what I know to be right. I know because I have lived it. I am here today because I was able to fix my heart before it got a chance to explode on me. 

I hope what she saw in my arteries spoke about the seriousness of this disease. I explained to her that for half of my life I did not have access to any cholesterol-lowering therapies, and that this is what happens when huge amounts of surplus cholesterol just circulate in your body. She paused and then her questions poured out ... 

The results came back later today and I have a 70-99% stenosis in my superior mesenteric and celiac arteries and a 3mm post stenotic dilation in the celiac artery in addition to this. Also, my abdominal aorta is narrowed. This is the first time when they actually measured both the stenosis and the dilation. Until now, they described them as “mild” which over the years turned into “severe”. Now they are described as “severe” but we also have numbers. My vascular surgeon appointment is set for next week. 

Like with this blog - I hope I helped one person today. Or as it is the case with FH: I hope I helped a family. 

Take good care and here’s to a healthy 2026!